The visit schedule was similar to my prior itineraries: arrive on Tuesday, have an MRI scan; and then consult with the doctors and speech pathologists on Wednesday (and Thursday).  As mentioned before, the scans and doctor consults are now more routine, with “boring” and “unremarkable” being the goal.  The more actionable and impactful elements now focus on swallowing and rehab programs.   

One interesting observation about the MRI is how busy and efficient MDACC is.  My MRI was scheduled for 8:45pm on a Tuesday night at the Radiation Outpatient Center (ROC).  I believe this facility does scans from 6am to 11pm.  They are so busy that my last two scans there have taken place in the mobile units.  ROC added these three mobile units - essentially trailers - outside the permanent building to meet demand.  It is a little strange to walk out to these mobile units, as the area doesn’t feel permanent; it is tented with visible ventilation.  I also have to take a lift gate up a few feet to enter the MRI unit. ROC is not the only location to get an MRI - I think MDACC has nearly 40 MRI scanners across its campus.

Oncology

I was fortunate to get the good news of the clear scans early on Wednesday, when meeting with Jill, Dr. Maniakas’s PA (Dr. Maniakas was out that day).  With no symptoms or concerns and no signs of recurrence from the scan, there wasn’t too much to discuss. I haven’t thought about the thyroglossal duct cyst excision for a while and the scar is barely noticeable now. I didn’t discuss the hole in my eardrum, as that is usually addressed by a different ENT doctor at MDACC.

Dr. Faye Johnson is my new medical oncologist, following Dr. Gillison’s departure (I had met with a covering doctor during my last visit in Nov).  The consultation was similar in the sense that there wasn’t much new to discuss. A welcome development was the change in the follow up schedule.  Since I had only just finished my immunotherapy treatment in December 2025, medical oncology had wanted to see me on a 3 month follow up schedule.  But Dr. Johnson said that she was comfortable moving me back to a 6 month schedule, which is in line with Dr. Phan’s schedule.  So instead of my next visit in May, I won’t be back until August.

Dr. Johnson did confirm one encouraging bit of news. I had seen a story about Dr. Gillison (my former and trusted medical oncologist and a giant in her field) receiving the VinFuture Prize in December 2025. There was a picture of her onstage in Hanoi with her fellow laureates. Even though the reason of her leave isn’t public, it’s good to know that she is still making public appearances.

The visit with Dr. Phan and his team was similarly positive.  He remains very pleased with the scans and how the surrounding structures have remained intact. Perhaps the most memorable part of the visit was when I was meeting with Dr. Kouzy, a fourth year resident.  While on the phone with Aiday, Dr. Kourzy and I discussed options for how to relieve dry mouth. He mentioned a number of methods, including acupuncture, ginger chews, sugar free gums, xylitol.  Unprompted, he also mentioned that sour candies may be helpful.  So he confirmed what I’ve been saying all along - I NEED to buy and eat sour gummi bears for medical purposes, on doctor’s orders!

Speech Pathology Appointments & Modified Barium Swallow Study Results (from November 2025)

In addition to the oncology appointments, I had three visits related to my swallowing and speech.  The first was with Dr. Aponte-Wesson, my oral oncologist. I’ll write more about that visit in a separate post. The next two were with the speech pathology team.

I met again with Dr. Barbon, who I hadn’t seen since December 2024. Her focus is on maintaining my tongue and swallowing functions. She told me that since my hypoglossal nerve has damage from radiation, there is asymmetry in my tongue strength. Specifically, the right side of my tongue is weaker than the left. That means that when I stick my tongue “straight” out, it deviates to the right (the weaker/damaged side). This happens because the left side tongue muscles push my tongue more strongly towards the right and the right side muscles cannot oppose in equal measure. The weakness also presents in pushing out my cheeks - I can’t push out as much on the left side.

Dr. Barbon and I also discussed the swallow study from November 2025 and how it compared the previous one from March 2024. The hope was that the filler injection might be beneficial. Unfortunately, the results of the MBS showed that my swallowing is getting slightly worse. I am now at DIGEST 3 (S2, E3) “severe pharyngeal dysphagia”, which is a progression from DIGEST 2 (S1, E3). The Safety part of the score increased but Efficiency was unchanged. In summary, Safety refers to the risk that food/liquid enters the airway (Penetration–Aspiration Scale (PAS)) while Efficiency refers to strong my swallow muscles function, as measured by residue left by liquid, pudding, crackers. The report also notes “pharyngeal contraction bilaterally weak” (meaning weak swallowing muscles on both sides).

Overall, while these results are clearly sub-optimal, it hasn’t yet taken away my enjoyment of food and eating. Clearly, there are some foods that are more challenging to eat, and I have to eat in a different way (more slowly, mindful of nasal regurgitation, etc.). But I can still enjoy the flavors and go out to eat without much restriction or requiring supplements.

The goal of the SLP program is to maintain my function at these levels for as long as possible. Towards that end, I have several different rehab exercises to address various issues. Here is the current protocol for the week:

• EMST (Expiratory Muscle Strength Training) - swallow muscle strength

  • Maintenance: 5 sets of 5 reps, 3x/week. Maintain highest resistance setting

  • Pinch nose (vs. using nose plugs) to ensure no air escapes. Do no allow cheeks to puff

• IOPI (Iowa Oral Performance Instrument) - tongue strength

  • Maintenance: 1-3 sets of 10-20 reps (3 second max pressure hold), 3x/week for both Anterior and Posterior

  • For Anterior, focus on using the tip of the tongue and do not involve jaw muscles

  • Measurements for 1 rep max - slight decline from November 2025

    • Anterior: 28-35 using tongue only. Down from 36-38

    • Posterior: mid 30s vs 38-41 in Nov

• TonguePress - tongue endurance

  • Endurance: hold pressure for as long as possible (12+ seconds) until failure, rest, and repeat

  • Measurements: was able to hold for 30+ seconds

• Lingual Range of Motion - tongue deviation

  • With tongue out, move from side to side. Consciously initiate the movement with the weaker side

  • Pull my tongue to the roof of my mouth

• Swallow Exercises

  • Four different exercises - Effortful; Mendelsohn; Supraglottic; Masako

  • Maintenance: 1 set of 10 reps, 3x/day, every other day

• Jaw and Shoulder Mobility Stretches

  • A number of stretches, usually at 3x 30-40sec holds per side. 3x per week

  • This is to address the diminished range of motion related to the spinal accessory nerve damage

Other Side Effects

In addition to the swallowing and tongue issues, there remain other long-term side effects need to be managed, principally: i) dry mouth and gingivitis; ii) lymphedema.

Dr. Aponte-Wesson noticed more pronounced gingivitis.  (I’m not sure it would have been as noticeable if I had had a recent dental cleaning, as my next cleaning is coming up shortly.) She attributed the gingivitis as a consequence of dry mouth.  The constant lack of saliva in my mouth has detrimental effects on my oral health, so I’ll have to redouble my brushing and flossing efforts.  She said that the xylitol lozenges and gums that I use to provide temporary relief doesn’t help for the purposes of oral health.  I’ll see what my dentist say when I see them for my next cleaning.     

Another issue that has resurfaced is lymphedema, particularly under my chin. A few of the doctors noticed that area feeling a little tighter, so I’ll have to re-learn how to do self massage to drain the lymph nodes and prevent it from getting worse. Fortunately, both the lymphedema and fibrosis in my neck are relatively mild, so things could be a lot worse, particularly given that I’ve gone through two courses of radiation.

That’s it for this belated update. I’m planning to provide a more detailed discussion of eating issues and the obturator soon. Thank you again for reading and for your support.

Note: I think “Loong” is in quotation marks because that is my preferred name in their database. I’m not sure if they realized that “Loong” is my middle name, rather than some odd derivation of “Weng”.

Emotions & Mentality

While I am happy and relieved, finishing the maintenance immunotherapy infusions does not feel as significant as when I finished either radiation course (IMRT in 2018 and SBRT in 2023) nor the chemotherapy courses. I think the reasons for not feeling more accomplished are two-fold: i) I’ve been fortunate to be quite tolerant of the immunotherapy, and ii) not much will change following the completion.

The main side effects for me have been fairly minimal - some itchy skin rashes that can be relieved with a topical cream. In contrast, the first radiation course took a big toll on me and Aiday. In 2018, when there was broader radiation to my mouth and neck, I lost 40 lbs because eating was so painful and slow. I had so little energy back then - both during the radiation and subsequently with the chemo. From April to August 2022, when I went through systemic treatment, the effects were also rough, since that treatment included chemotherapy. I had to take drugs to combat the nausea and there were days (granted, predictable) when I had low energy. The completion of SBRT in 2023 also felt more significant in that that treatment was trying to kill a cancerous tumor. For that treatment, I had to lie completely still for 45 minutes because such concentrated doses of radiation were targeting the tumor. In contrast, the maintenance immunotherapy part of treatment did not result in any significant health challenges. I felt relatively good throughout the immunotherapy - I could drive myself to appointments, exercise, travel and do normal activities before and after. The main annoyance was the 4-6+ hours every 6 weeks to commute to UCM, wait for the bloodwork results and pharmacy clearance, receive the infusion (only 40 minutes in total) and commute back home. Healthwise, there were no expected changes in my bloodwork or scans as a result of the treatment.

Going forward, not much will change now that I’ve finished my last infusion, as there are no side effects that will improve. I will still have to continue to take levothyroxine for the rest of my life to treat hypothyroidism. Dr. Rosenberg, my medical oncologist at UCM, said the damage to the thyroid is essentially permanent. My daily pill is supplementing ~50% production. I’ll continue to have to have regular blood tests to potentially adjust the dosage, based on any changes.

The other reason why the last infusion does not feel as significant is that I could have stopped sooner if I wanted. Most patients on immunotherapy are only on the treatment for two years. I’ve been taking pembrolizumab for 3.5 years - the first 6 months were part of systemic treatment, then a year of maintenance when the tumor was mostly gone, then two years of maintenance after the SBRT. I had a natural ending point in August 2025, but I decided to continue to the end of the year, as insurance had already approved and I wanted to do everything possible to make sure cancer does not return.

As in 2018, I have to make a bit of a mental transition. There is a sense of reassurance in going to the hospital and seeing doctors and nurses on a regular (every 6 week) basis. Having my blood tested regularly and having nurses and doctors to answer questions about my symptoms and how I was feeling was helpful. I am still scheduled to have follow up appointments every 3 months, though that is not as frequent as every 6 weeks for infusions.

After the clear scan in December 2018 and the doctors told me I was “cancer-free”, I thought of myself as no longer a cancer patient. At that time, I thought of myself as someone who’d battled cancer and won. This time, though, even as I’m no longer in active treatment and have had a series of clear scans, I still think of myself as a cancer patient, albeit one not actively receiving treatment. At this point, I feel that there’ll always be a risk that it may come back, so I’m quite reluctant to consider myself “cured.”

Even if I don’t consider this a “major” milestone, it is nonetheless a reason to celebrate. Aiday, Charles and I went to Moody Tongue, in no small part due to them serving one of our favorite desserts - the 12 Layer German Chocolate Cake. Charles, not for the first time, attacks this cake as soon as it arrives on the table. There is no need for utensils in his mind.

This is not the first time that Charles has attacked this cake without utensils

This is what the cake looks like after his first round, before we get to try it

Economics of Cancer Care

Following up on post about Keytruda stick shock (17 June 2022), I reviewed my medical claims and the payments around my infusions. The 62 total number of infusions I’ve received breaks down as follows:

• Treatment (2018): 5 chemo infusions of cisplatin and carboplatin. This was used in conjunction with the radiation - weekly basis

• Adjuvant (2018): 6 chemo infusions of carboplatin and 5-FU to help prevent cancer from returning post-radiation - 2 drugs on monthly basis

• Systemic treatment (2022): 23 chemo and immunotherapy infusions total to treat the recurrence of cancer. The drugs were carboplatin, gemcitabine and pembrolizumab - 6 cycles of 3 weeks each (with infusions on day 1 and day 8 of the cycle)

• Maintenance immunotherapy (2022-2025): 28 pembrolizumab infusions every 6 weeks from August 2022 to December 2025

If you’ve ever been curious why cancer centers seem so nice (especially relative to other departments within a hospital) or why there are new cancer centers being built, the discussion below may help to explain it. In summary, cancer patients are a hospital’s cash cow, so cancer centers will compete for patients. Of course, having state-of-the-art facilities, cutting edge research, ancillary services, and social support networks will benefit the patients and their families. But the cancer centers and hospitals who serve them benefit financially, to a great degree.

As an infusion patient, since 2022 University of Chicago Medicine received payments from insurance for over $1.5 million dollars related to my infusions alone. For my maintenance IO, I was worth $400,000 per year to UCM - $50,000+ for each of my 8-9 infusions per year. In addition, they received payment for the blood tests needed to clear me for treatment and the consults with the oncologist, PA and nurses during those visits. My visits were relatively straightforward and didn’t require any sophisticated procedures or particularly advanced skills. A specialty nurse had to find a vein in my arm and properly insert an IV to deliver the drugs. The drugs were then delivered through the IV while I sat in the room by myself.

A standard infusion set up. My infusions were 30 minutes of pembro followed by a 10 minute flush

I had a new IV for each of my infusions - usually in my forearm

Another aspect I found a little odd was how the payment doubled when I went from the 200mg dose every 3 weeks to the 400mg every 6 weeks. For the 200mg dose, UCM would bill out around $80k and get reimbursed ~$26k by insurance. For the 400mg dose, UCM would bill out at around $160k and get reimbursed $54k by insurance. The administration of the drug is no different but somehow insurance agrees to pay double. It was just more convenient for me not to have to go as often. I still remained baffled by why insurance (in our case Aetna) is willing to reimburse at a rate more than double Keytruda’s list price of $24,000 per dose given every 6 weeks.

UCM billed out $163,021.90 and got paid $53,910.34 for a single infusion event. This included $52,633.61 for the pembrolizumab drug

The list price for the dose given every 6 weeks is $24,062.72. UCM got paid more than 2x this

To put this into context, the insurance paid MD Anderson a total of $73,000 for my SBRT treatment in August 2023, including the treatment planning, creation of the radiation stent and custom masks, and the 4 doses of targeted radiation. The treatment program requires highly sophisticated planning to precisely shape and deliver the correct doses from different machines to the tumor while minimizing damage to the surrounding tissue. In addition, the maintenance of the linear accelerators and lasers is necessary for them to work as accurately is required. During the each radiation session, there was a team of 4 technicians, in addition to Dr. Phan and his team, who were monitoring the treatment in real-time. While the radiation does was only a few minutes, the total time in the machine was closer to 45-60 minutes, as I had to precisely positioned and scanned before each dose. So I can understand why a SBRT treatment could cost on the spectrum of healthcare services - the training of the doctors and technicians carrying out this treatment as well as the cost of the radiation machines is high. Certainly much higher than an infusion pump.

Even if $73,000 for SBRT may been seen as a relative value compared to $50,000 immunotherapy, I can’t help but think about the costs in Singapore. The quoted cost for SBRT treatment at the National Cancer Center was around $22,000, a fraction of the cost at MD Anderson. That’s also only half the cost of a single immunotherapy infusion! And I’m sure the cost of immunotherapy infusions is a fraction of what it costs in the US.

Well, this is a relatively short update post, as we’ve reached a milestone. I’m still working on the other updates, so hope those will be posted shortly. Thank you again for reading and for your support.

Overall Highlights

August 2025 marked the two year post-SBRT treatment milestone. The good news is that that the scans remain clear, and there are no signs of tumor progression or recurrence. This is certainly the news we are hoping for and comes as a relief. That being said, neither scan appointments was as straightforward as we would have liked.

In terms of the long-term side effects, the swallowing issues have become a bigger concern. Specifically, not all food and liquid is not going straight down my esophagus - some is escaping through my nose and some is getting stuck. Because of the radiation, my palate does not form a tight seal with my throat. The next post will detail the efforts to address this, including filler injections and a prosthetic device called an obturator. In the first few days of usage so far, the obturator has been beneficial.

The third post in this series will be around the Texas travel. In August, Aiday, Charles and I decided to make a short vacation out of it, so we went for 8 days, including a short trip to Austin. Yes, Texas in August is as hot as it sounds! We ate a lot of great BBQ that trip. For the November trip, I went solo to Houston for 5 days. Both trips featured a lot of great eating, so that post should hopefully be mouth-watering and have more pictures.

Scans and Medical Oncology

August 2025 - Dr. Gillison

Note: This section will be chronological, as I had written some of this earlier this summer.

As usual, my appointment schedule at MD Anderson in August was very efficient - all done in a single day. The day started with an MRI at 6am, and then I had appointments with speech pathology, ENT, radiation oncology and medical oncology. I was done by around 4pm, so even earlier than usual.

In summary, the scans remained clear, with no signs of recurrence or progression. At this point, the news is more of a relief than a feeling of elation. We got the news from Dr. Maniakas, my ENT, at around 11am, so the rest of the day was getting confirmation from the oncologists. My appointments tend to be pretty straightfoward at this point. There isn’t any discussion about treatment plans or expected changes, and the goal is just to maintain the status quo.

Along those lines, my appointment with Dr. Phan was relatively quick. As the scans are clear, there was nothing to show me from the MRI (whereas previously he could show me side by side images of the tumor and various stages). With me being 2 years out from the SBRT treatment, Dr. Phan only needs to see me every 6 months, as he does not expect any changes. His prognosis for me is quite encouraging.

My happiness with the good news of clear scans was tempered by the news around Dr. Gillison, my medical oncologist. On my appointment schedule, I had noticed that I was scheduled to see Jennifer Owens, Dr. Gillison’s PA. I had assumed that Dr. Gillison was going to be on vacation or at a conference. However, we found out that Dr. Gillison took a leave in July. She had informed MDACC in August (the week of my visit) that she was not going to return to see patients. Jennifer could not disclose any more information, but she said to send our thoughts to Dr. Gillison. Without knowing any more, this sounds serious and not merely a case of her moving institutions.

Dr. Gillison has been our most trusted doctor throughout this phase of treatment. I really like and appreciate her expertise and her manner. As a world class and pioneering researcher (she is one of ~10 faculty at MDACC who is a member of the National Academy of Medicine), she speaks from a position of authority. She has the credentials and confidence to make very clear recommendations, such as when she told us in no uncertain terms that the treatment plan offered by UCM was unnecessary. During our appointments, she always responded thoughtfully and thoroughly to my questions. She did it in a way that I could understand and that was medically precise - she didn’t dumb things down for me. I liked having to look up certain terms to figure out exactly what she was saying. She was both realistic and encouraging. We relied on her opinion to guide the course of treatment and manage our expectations.

Previously, we had discussed how long to remain on immunotherapy. Dr. Gillison discussed how there aren’t really any studies of patients who’ve been on immunotherapy for longer than 2 years. Based on the current studies, the benefits of immunotherapy are durable and long-lasting. In other words, the body’s immune system is trained well enough to act, even if the patient is no longer actively receiving the drugs. In addition, drug companies don’t want to approve longer-term / indefinite treatment, so there isn’t a sizable patient population that has taken IO for longer than two years.

I may be a bit of unique case in that I started immunotherapy in April 2022, as part of my systemic treatment with chemo. So I’ve been on IO for 3.5 years already. We had discussed finishing the treatments after my September 2025 infusion (two years post-SBRT). However, without Dr. Gillison’s direct advice and with my insurance having already approved infusions through the end of 2025, I figured to do the additional treatments. My reasoning is that a) I tolerate the drugs well, i.e. limited side effects beyond occasional mildly irritating skin rashes and b) I don’t want to have any second thoughts about not doing everything I can do ensure the cancer does not return. Going back to 2018, I was initially disappointed that I was not randomized into the control group - the group that did not get additional adjuvant chemotherapy post-radiation. Instead, I was assigned to the group that had to receive 3 more rounds of a rather tough chemo drug (5-FU), which was administered through a pump I had to wear and carry around with me. This followed a pretty tough 7 weeks of radiation, during which I lost 40 lbs and had trouble eating. While I didn’t enjoy it at the time, if I had not done that additional chemo, I would have always wondered if the cancer came back because I didn’t do enough. Using that same logic, I want to make sure I do as much as I can now to reduce / eliminate that sense of questioning.

With the plan to eventually come off immunotherapy, the medical oncology team at MDACC wants to monitor me every 3 months (vs. seeing Dr. Phan and radiation oncology every 6 months). Thus, the schedule to return in November 2025 vs. February 2026.

November 2025 - Elevated Anxiety

This trip was initially scheduled as my typical Tue/Wed (11-12 Nov) visit, but without radiation oncology on the schedule. However, the visits were extended to Mon-Fri (10-14 Nov) since I wanted to see oral oncology to have them fabricate the obturator (more on this in an upcoming post).

Subsequent to the August visit, I had infusions at UCM on 10 September and 24 October. As part of my bloodwork, I get an EBV test. As a reminder, my tumor was EBV positive, so the blood tests are a way to potentially identify the return of the cancer. The results of my 10 September test were negative - “Not Detected”. However, the test on 24 October returned an abnormal result - EBV was detected, though below the quantifiable threshold. I had become so accustomed to the “Not Detected” result that I didn’t even check the test result until 6 November. So in a way, I was blissfully unaware for several days and could enjoy Halloween and other activities without the additional anxiety.

I was also fortunate in that I was scheduled for scans at MDACC on 12 November, so I “only” had a week of elevated stress. While Dr. Phan and the oncologists did not expect the tumor to return, I still had concerns after seeing the EBV test results. After all, the cancer wasn’t supposed to return after my 2018 treatment. Even though there were plausible explanations - general fall sickness season, I had gotten vaccines for flu, Covid and shingles between my infusions - those did not totally allay my concerns. Mentally, I did not go to the darkest places, though I was concerned and probably more irritable during those days. The effect of the test result was to make me hyper-sensitive to everything going on in my right ear. I spent the weekend wondering whether the little pressure changes / perturbations in my right ear were the result of a tumor. I probably would have dismissed those concerns as normal if not for the positive EBV result.

To further add to my stress, traveling from Chicago to Houston on Monday, 10 November was not the smoothest. Instead of a relaxed afternoon flight, I was scheduled for a 5:10am flight, as I had a Monday afternoon appointment. In addition the FAA flight reductions (nominally due to the government shutdown), Chicago got ~6in of snow overnight. When I woke up at 3am, I saw that my flight was cancelled, and I had been rebooked on a flight that was scheduled to arrive around 9pm that night - meaning I would miss my Mon appt. I went to Southwest’s app and managed to book myself on a 5:55am flight to Austin, with a connection to Houston arriving at 1:10pm. I still might be able to make my 2pm appt. As I suspected the 5:10am flight was one of the casualties of the FAA flight reductions, I figured I would go to Midway and try to catch the 8am direct MDW-HOU flight. As it turned out, about 85% flights that morning from MDW were canceled, likely due to the snow, and the next direct flight to Houston was in the evening. I was really lucky to get on one of the flights that actually left.

After landing in Austin around 8:15am, I decided to change my car rental and drive to Houston, about 3 hours away. I would definitely make my 2pm appointment (with time for a nice lunch, to boot), and I didn’t want to hang out in the Austin airport for 4 hours. Also, MDACC’s travel agreements allowed me to pick up in Austin and return in Houston without any extra charges, so that was a bonus.

The oncology part of my visit started on Wednesday, 12 November. I was supposed to start at 8am with labs but when I sat down and asked what they were drawing, the EBV assay was not in the orders. In hindsight, I should have messaged the team in advance so that they could add it. Instead, I spent a few hours calling and waiting for the test to be ordered. I was hoping that the EBV test would come back “Not Detected” sometime on Wednesday so that I could relax a little more before seeing the oncologist on Thursday. However, I didn’t get my blood drawn until ~1:30pm, and I did not get results that day, so that prolonged my uncertainty a little bit longer.

On Thursday, I finally met with the oncologist. As I suspected, my blood pressure was elevated - as high as 170/110 on the first reading. I did come down a little a few minutes later, but certainly not to the 120/80 zone.

To add to the anxiety, I was taken to the exam room a little after my 9:30am appointment time. I waited, and waited, and waited - I wasn’t seen until after 11am. Because of the positive EBV test, I started to wonder whether I wasn’t being seen because the conversation would be longer than a routine, clear scan. That’s the impact of the abnormal EBV test.

I met with Dr. Laura Chow, an oncologist whom I had not seen previously. Going into the consult, I had more nervous energy than previous appointments with oncology. Fortunately, the radiology reported “stable post treatment changes…without suspicious enhancement.” What a relief after all the anxiety!

The latest EBV test results were unknown during the appointment, so Dr. Chow ordered a precautionary PET scan for February, in case the test showed elevated levels and I became symptomatic. A few days later, the EBV test came back - “Not Detected”. The clear MRI scan and that resulted eliminated the remaining concerns about recurrence, so I’ll plan to cancel that scan.

The one outstanding question is who will be my medical oncologist at MD Anderson. Dr. Chow told me that she is merely covering for doctors on maternity and paternity leave. So I’ll have to check back with MDACC to see who will be my regular doctor going forward. Logistically, a doctor who has clinic the same days as Dr. Phan would be preferred, so that I can maintain the efficient schedule.

In summary, the scans remain clear and my prognosis remains optimistic. I am planning on doing my final immunotherapy infusion on 3 December 2025. In some ways, I’ll miss the reassurance of getting regular blood tests and seeing the doctors and nurses at University of Chicago. It’ll also be nice to think that at that time, I will no longer be an “active” cancer patient receiving treatment but will instead be moving towards a monitoring phase.

Thank you again for reading. I’ll plan to have the next two updates in the next few weeks. Hope you have a happy Thanksgiving.

Once again, it is quite a relief to hear that the scans are clear. Even though that is sort of the expectation now - I do not detect any changes in energy or pain that would be an indication of a tumor - it is reassuring to confirm that with the scans. As I’ve mentioned previously, I enjoy talking with Dr. Phan and Dr. Gillison, as their experience and expertise give me confidence that I’m doing about as well as can be expected for a patient with my history.

Health Challenges - January and February

Immediately after my last post in January, I had a few health challenges. Namely, I had i) flu & pneumonia, which required another hospital stay, ii) a brain MRI and iii) setbacks in my jaw / swallowing capabilities.

During my regular immunotherapy on 25 January, I felt fatigued and feverish. The next morning, I had no energy at all and I was burning up - my temperature was 103F! Per my post surgery recovery instructions, we went to Northwestern’s ER, as my fever was well over 100F. After a few hours wait (city center ERs are quite depressing places, even at 10am on a Saturday), I was admitted and spent the next 3 days (2 nights) in the hospital. Thus, during an 11 day stretch (17-27 Jan) starting with my surgery in Houston, I spent 5 days in a hospital (and getting to eat hospital food!).

I was diagnosed with flu and pneumonia. I believe the post-surgery protocol was to make sure my body wasn’t reacting to a surgery-related infection, but this seemed coincidental with a bad flu season in Chicago. At NM, I spent the first night in sort of a temporary holding area on the mezzanine floor. It was not the best room, I had to use a bathroom down the hall, and I could literally see all the foot traffic outside the window. The second night, because I am a cancer patient and had just received an infusion the day before, I got transferred to the oncology floor. This was on the top floor of Prentice, with my own private bathroom and much nicer views of the city. The doctors actually wanted me to stay for a 3rd night. That would not normally be a bad idea, as I could more easily isolate from Aiday and Charles. However, they both were diagnosed with the flu over the weekend as well, so we all had it. Thanks to in-part my tamiflu shot, I was further along in my recovery than them, so I took my discharge on Monday night.

In early February, I had a visit with a UCM neurologist, as this as scheduled as the “urgent referral” related to my intractable hiccups. When I saw Dr. Graf, we barely talked about the hiccups, and she administered a series of neurological tests. One of them was to stick out my tongue. She noticed a deviation to the right. While I thought it was almost certainly related to the effects of radiation, she wanted to be sure that it wasn’t anything more, so she ordered an MRI of my brain, out of an abundance of caution.

As a veteran of MRIs (not necessarily a good thing, like being called a “veteran of the NBA draft lottery”), I was fine to do another one. (Unlike CT scans, MRIs do not use radiation, so I wasn’t getting any more of that.) However, during this MRI, I had spasms in my jaw muscles. They didn't cause big movements, but I was concerned that they would affect the images. Fortunately, the tech said the scans were fine. Apparently the MRI Brain did not reveal anything concerning, as I did not need a follow up visit with the doctor who ordered it.

The jaw muscle spasms are an example of other setbacks I’ve had with respect to my swallowing and speech functions. As my recovery from the thyroglossal duct cyst removal surgery required no neck strain, I had to pause much of my rehab exercises for ~2 weeks. That is when I started noticing greater frequency of swallowing issues and my jaw muscle weakness. In terms of swallowing, I notice that I now cough up more food that isn’t fully swallowed. In particular, fruit like apples and oranges are harder to swallow now. For the jaw muscle weakness, for example, when I am engaged in prolonged conversation, my muscles start to fatigue, and I need to pause for a few minutes to allow them to relax. Otherwise, my speech becomes slurred and less intelligible than usual.

Houston Visit - April

I think of consultations in two categories: 1) oncology and 2) quality of life and side effects management. For oncology, the appointments include the MRI, bloodwork (EBV test) and visits with Dr. Phan and Dr. Gillison. For the quality of life and side effects management, those visits are primarily with speech therapy and ENT - Dr. Maniakas and his team.

In terms of oncology, the “home stretch” is starting to come into view. The follow up plan has moved from every 3 months to every 4 months, with my next visit planned for August. After that, I’ll be on a 6 month interval for the next 2 years and then annual starting in year 5. As mentioned, the treatment plan is to continue on immunotherapy until August. After that, Dr. Phan plans to have me on a vitamin E and pentoxifylline drug regimen. This is intended to help reduce the longer-term side effects of the radiation treatment.

My first appointment following the MRI scan was with Dr. Maniakas and his team. He first wanted to follow up on the TDC surgery. Very good news on that front, as the scar is healing nicely and their muscles around my neck remain soft. As he planned, the scar is along one of the natural skin folds in my neck, it doesn’t stand out much. I do really like Dr. Maniakas’s manner and care. A few weeks after surgery, he called me in the evening to check in, respond to some questions I sent via MyChart and provide some additional care instructions.

While oncology remains quite positive in the outlook, I do have quality of life issues that I am actively addressing. I am experiencing more of the long-term side effects of radiation, mostly from the 2018 course (as a reminder, that was 70 Gr of total radiation administered to my head and neck over 7 weeks). These side effects are expected, but as Dr. Gillison noted, there aren’t long-term studies to provide a guideline for what I should expect. There are two reasons for this: a) there isn’t funding to study patients >5 years post-treatment and b) the patient population with my background (particularly two courses of radiation - more than 100 Gr total) is small. Dr. Gillison said that immunotherapy is extending the life of many patients, so there are more people like me and I am “not a red headed Eskimo.” So while there are case studies, there isn’t a study to an answer to my question of what does the trajectory look like for the progression of side effects.

For me, the main side effects of the radiation include the following:

• dry mouth (xerostomia)

• nasal regurgitation

• swallowing issues

• tongue vesticulations and weakness

• muscle stiffness / fatigue, particularly on the right side of my jaw

• right shoulder weakness, particularly the trapezius muscle, and scapular winging

The good news is that the MDACC SLP I met with this time - Esther Volmer - said that my neck still remains quite soft and that I don’t have lymphedema, though I do have fibrosis. This was in concurrence with Dr. Phan’s examination. I had re-engaged with my physical therapist at Rush a few weeks ago, and we’ve been working on a number of exercises to stretch and build strength in my neck and shoulders. The team at MDACC want me to continue that program.

Until this visit, I didn’t realize that the jaw muscle tightness and the right shoulder/trapezius weakness are both related to the same underlying issue - damage to my spinal accessory nerve (SAN) from the 2018 radiation. I had thought that the shoulder weakness was more related the frozen shoulder I had a few years ago. However, the doctors explained to me that the SAN innervates both the sternocleidomastoid and the trapezius muscle. So two major muscles impacted by that one nerve!

While we had brief prior discussions about getting botox injections to help relieve the muscle spasm issues, at this point, the plan is to try to manage the jaw stiffness with manual therapy (massage) and stretches. Unlike the nasal regurgitation, this issue it still more in the nuisance / mild annoyance category, and it doesn’t affect my day to day functionality. If the condition worsens, then we can re-assess.

As all the doctors, SLPs and PTs say, my goal is just to try to maintain my functionality as much and for as long as possible. I’m hoping that there is a plateau and I’ll stay on it for a while. But there aren’t any assurances that the side effect progression doesn’t continue linearly or becomes significantly worse at some point. I’ll just have to re-double my efforts on the rehab program.

As far as rehab, the TonguePress is one exercise that needs renewed focus. During my visit, my max tongue pressure dropped from 48-50 in prior tests (back in Dec) to 40-42 currently. In addition, when I press my tongue to the inside of my cheek, there is asymmetry - there is greater pressure on my right cheek and less on the left. This is all consistent with have greater radiation on the right side of my neck and face. There is some concern that I have radiation damage to the CN XII nerve that innervates my tongue.

The issues that affect me most on a day-to-day basis are the dry mouth and the nasal regurgitation. I’ve tried most all of the products for dry mouth, with the xylitol lozenges being my preferred relief currently. While dry mouth is not as much of an issue when I’m home, it does present more of a challenge when I’m traveling. I do try to have water or liquids with me at all times, but when I don’t, the effects of dry mouth aren’t pretty. It results on a build up on my teeth and lips - there is no saliva to help clear them. I have to remind myself to wipe those clean before taking pictures. The expectation was that I’d lose 20-50% of my salivary glands after the 2018 radiation. Initially, I thought/hoped that I’d lost only 20%, but now I think I’m at the upper end of that loss range.

Dr. Phan’s team provided a few things to try. First, they re-iterated the benefits of the baking soda rinse. The rinse is alkaline, so that may be beneficial in stimulating saliva production as well. Second, they recommended acupuncture as a treatment. This seems to be supported (or at least not contra-indicated) by studies, so I’ll have to start that again. Finally, they gave me samples of another OTC product called Smart Mouth, so I’ll try that as well and see if it might be helpful.

The other major issue is nasal regurgitation (I think the medical term for this is velopharyngeal dysfunction, or “VPD”). Even before discussing the eating issues, Dr. Maniakas said that my voice sounded more nasally than last time, indicating that air was escaping through my nose. As my nasopharynx does not close properly, food and drink ends up going up into my nose and not down my throat. This issue is starting to rise above a “nuisance” levels of discomfort to being more problematic. It is happening more frequently. For fluids, especially when I drink while I still have food in my mouth, the fluid can come straight out of my nose. This is not a huge issue when I’m drinking water - it just looks like I have a watery, runny nose. But when I’m drinking tea or red wine, it does look weird - and has a chance of staining my clothes, if I don’t catch it in time. For food, nasal regurgitation is an irritant. Small foods like rice, noodles, spices, broccoli florets, for example, end up in my in my nose, which makes me want to sneeze or blow my nose. Both the dry mouth and the nasal regurgitation means that it takes me longer to eat than normal, as I it takes longer to swallow certain foods and I have to manage food that doesn’t always go down smoothly.

I went to my SLP at Rush prior to my visit to MDACC. He did an endoscopy with colored water to assess and video the issue. In addition, he confirmed what the MDACC team also suspected - that my soft palate moves well and symmetrically. The problem for me is that the back of my nasopharynx is a little stiff and does not close as it should.

Fortunately, there is a treatment to address this. Dr. Kobayashi, a fellow working with Dr. Maniakas, provided the details of this. The treatment would be to inject a filler to bulk up the area to increase the likelihood of that area closing and preventing food and fluid from coming back up. He suggested doing a first treatment with a shorter duration filler - one lasting 6 weeks to 3 months - to ensure that it provides the expected benefits. Then I would get longer lasting fillers - 3-6 months - to address this issue. This is an outpatient procedure with local numbing anesthesia, so the most significant side effect is pain. The downside, though, is that this is another chronic condition that may require lifelong management, analogous to having to take a pill for my hypothyroidism and needing ear tubes for the eustachian tube drainage issues.

This is a procedure I have yet to do. On the one hand, I trust the team at MDACC to do the procedure. On the other hand, this sounds like something that needs to be done 1-3x / year, so I’d prefer to have someone in Chicago with expertise to do this. The team at MDACC said that while this procedure is not novel, it is also not common. They suggested trying to find someone with a laryngology fellowship (like Dr. Kobayashi, though he is moving on from MDACC in June). I’m hoping to find someone with this type of relevant experience in Chicago.

The filler injection procedure and adherence to the exercise program will have the most impact on quality of life over the next few months. I still need to find a good routine for the maintenance rehab program, as I have different exercises for tongue, swallow, jaw mobility, and shoulder stability & strength.

Medical Industry

I had an interesting conversation with Dr. Gillison about various aspects of the medical industry. In terms of research funding, she said that NCI studies are typically funded to study a) acute toxicities for 180 days, b) quality of life for 2 years and c) survival rates for 5 years. In this political environment, she said that MDACC is feeling the effects of the funding cuts. Since the overhead costs are now capped at 15%, MDACC is losing ~$100M in research funding from that change alone. She is also concerned with cuts to post-doctoral training funding, there is a risk to losing the half of the next generation of doctors, especially if these cuts do beyond the next 4 years. She wonders where those doctors will go, since pharmaceutical companies are also cutting their funding in response to the policy changes. Sort of stating the obvious, she didn’t think that people were voting for cutting cancer research and killing people.

Quick Notes on Eating & Travel

While the first few weeks after returning from Houston were tougher than usual, I recovered fully. Further, we’ve had some great trips to Mexico City (4 days of food indulgence) and Japan (2 weeks in Tokyo and Kyoto - my first time outside the airport). Both were amazing trips. I’ll have to write more about this later.

For this short trip to Houston, I stayed with our friends in Friendswood, which is near the NASA complex. It worked out well that I was able to try a place nearby called Viola & Agnes Neo Soul Cafe. This is a Creole restaurant (one of my favorite types of food - I even did a solo eating trip to New Orleans a few years ago) that was named in NYT Restaurant List of 2024 (50 places across the US). The gumbo was really excellent - spicy and depth of flavor - topped with a crab claw, a chicken drumstick and a hard boiled egg. The fried catfish was cooked expertly and the sticky chicken special were also tasty. I wish my stomach could have handled more, like the etouffe. The place has more of a dive bar feel to it and didn’t have much in the way of desserts, so no bananas foster for me.

On Wednesday, because my visits to MDACC were so efficient and on-time, I finished in early afternoon. I had an MRI, blood draw, and 4 consultations between 7:15am and 2:15pm, so I was able to both move up my flight and visit another restaurant. Conchinita & Co is a casual Mexican restaurant on the way to the airport, so I had a margarita and their namesake conchinita pibil dish. It was a nice way to celebrate the good news from the visits.

Cup of gumbo (Texas-size portion)

Sticky chicken special and fried catfish, with cajun corn and red beans & rice sides

Conchinita pibil platter and passionfruit margarita

Thank you again for reading this and for the support. I am feeling good - no pain and no energy change - and without symptoms and hopefully this continues. The radiation side effects are manageable, though it requires more visits to rehab and an extensive home program, and I’m able to enjoy traveling, eating and most thing as before. We have fun plans for the summer and I’ll keep you updated.

This first post will focus on food from Kyrgyzstan and Uzbekistan. I’ll break it down by three general categories:

• Kyrgyzstan - Home Meals

• Kyrgyzstan - Favorite Foods & Restaurants

• Uzbekistan Eating

Even after being back for several months, here are some of the meals and dishes that I miss and are particularly memorable:

• Lagman, particularly a) chive lagman and b) boso (fried) lagman

• Ashlyan-fu from Karakol

• Plov from Besh Qozon (Tashkent)

• Tandoor lamb from Katta Tosh (Uzbekistan)

• Achichuk salad from Afsona (Tashkent)

• Home cooked meals

• Fresh lamb and natural fruits

The good news is that we have been able to et some of these items in the US, made by friends (and one of Charles’s babysitters) who are Kyrgyz. They make very good versions, but the ones in Kyrgyzstan were better.

Overall, the food in Central Asia is characterized by natural freshness. By that, I mean the meats often start as whole animals butchered on-site, so the what we are eating was alive just hours earlier. The fruits are similarly picked fresh nearby and sold in the market or on the street corner. In addition, everything is all-natural and organic - the animals feed on the grass and run freely; the fruits and vegetables have their true concentrated flavor. There isn’t an industrialized food production industry as in the US.

In general, traditional Kyrgyz cuisine is based on meat - lamb, beef, horse - and cooked with techniques befitting a nomadic culture. There typically aren’t a lot of spices beyond salt and pepper. A few key dishes can be found on nearly every restaurant menu:

• Boorsok: fried bread to start a meal

• Pelmeni: little dumplings, which can be boiled or fried

• Manti: steamed larger dumplings filled with meat and onions

• Samsa: baked dumplings in a flaky pastry. Often sold on the street

• Beshbarmark: a national dish made of pasta topped with finely chopped meat. The translation of the name of this dish is “five fingers”, as the meal is traditionally eaten by hand

• Kuurdak: meat and potatoes

• Lagman: noodles with meat and vegetables. This can be served as a soup, semi-liquid (gyuro), or stir fried (boso). The sauce usually includes soy sauce and other seasonings

• Plov: rice dish with meat and vegetables, also known as pilaf

• Shorpo: soup broth with meat and potatoes

• Shashlik: skewered grilled meats

Restaurants will also serve a variety of salads and more speciality foods. In addition to the traditional nomadic foods, Kyrgyz food also includes dishes influenced by Dungan and Uyghur cultures. One especially tasty dish is ashlyan-fu, a cold noodle dish thought to cure hangovers and other illnesses.

Kyrgyz cultures values hospitality and it is reflected in the meals. Tea is always poured, both as a welcome tradition and as part of the meal. Kyrgyz tea tends to be brewed very strong and then diluted with hot water. My cup was hardly ever empty - as soon as I finished, it was refilled. A bounty of boorsok is plentiful is always offered to start a meal. The boorsok is usually served with kaymak, a clotted cream that is between a butter and a sour cream in terms of consistency and taste. Another food item worth mentioning is navat, a crystallized sugar that is both a sweetener for tea and a dessert on its own.

In terms of prices, food in general is quite reasonable. For local restaurants, dishes like manti and samsa are $1-2 each, lagman are $3-4 per plate, soups are $3 per bowl, beshbarmark and kuurdak is $4-6 for large plates (enough for sharing), shashlik is $3-8 per skewer (depending on the meat). Some larger platters or big plov will be costlier. In general, it’s hard to spend more than $20-25 per person at a nice restaurant meal. There are some “fancy” restaurants, e.g. Frunze, Barashek, that have the trappings of fine dining, i.e. higher end decor, more refined plating, better service, etc. These can be a bit more expensive, but we preferred the more local establishments that offered superior value. Those restaurants are likely geared more for ex-pats and tourists vs. locals.

Finally, before getting to the food pictures, here are a few words that are important in the context of eating and food

• “daamduu” (даамдуу): this is the Kyrgyz word for delicious. When eating an especially tasty version of lagman, feel free to exclaim “daamduu!”

• “kushiat” (кушать): this is a Russian word for “eat.” For us, it was used like a command to start or continue to eat. Charles was able to teach this world to some friends
  

Kyrgyzstan - Home Meals
Most meals are consumed at home and often as part of a larger gathering. Preparing meals is a family / community event where everyone has a job. In general, the men and boys will butcher the animal and then prepare the various parts (nothing is wasted). The women and girls will prepare the doughs and vegetables. The doughs, which make the breads, noodles and dumpling wrappers, are so good and they make it look so easy. Both will then cook and assemble the dishes.

One main way to honor guests is to sacrifice a sheep, goat or horse. Aiday’s family would go to the auction, select a sheep, bring it home and then keep it tied up until it is time to start preparing the meal. The animal is honored with a prayer and given thanks, and all parts are used. The honored guests (us, in many cases) get the best cuts of meat. Whatever is not used that day is saved for later that week or distributed to family and/or community.

The first night of arrival featured a kuurdak, Kyrgyz’s national meat and potato dish. The fat from the meat coats the potatoes and imparts a great flavor. Kyrgyzstan does not use a lot of spices beyond salt and pepper in its cuisine. While part of the Silk Road, it was not a trading center, so it doesn’t have “exotic” influences.

Everyone is involved in preparing the sheep, which was walking around in the garage minutes before this photo

The best lamb meat is used to make kuurdak. The potatoes have a great flavor from the lamb fat

Feasts are typical for a family gathering. For these meals, a long table is set with a large variety of salads, fruits, boorsok (fried dough) and other finger foods. After that, the main course(s) will be served. These could include meats, kuurdak, beshbarmark, and more. Of course, a variety of desserts (which often includes a cake from Kulikov) close out the meal. Aiday’s family was quite amused as I had a keen eye for the distinctive purple Kulikov signs, as though my radar was finely tuned to seek them out.

Kyrgyz culture values hospitality and making sure guests do not go hungry. Tables are set with more food than can be expected to be eaten

Snacks and appetizers include salads, meats, fried dough, jams and much more. Food is served communally, so everyone can take portions. Each section of the table has a similar spread

This is an example of a home mode beshbarmark. The meat can be lamb, beef, horse, qazi (horse sausage) and more. In this case, this was yak meat - extremely tasty!

Sometimes a celebratory meal includes plov from Uzbekistan along with buckets of fried chicken from KFC

Other home cooked meals feature lagman (noodles with beef), and manti (dumplings), and shashlik (grilled meats). As fitting with its nomadic history, these dishes can be prepared outside using an open fire and a kazan - essentially a large wok - or grill. We had these dishes in places ranging from our rented apartment in Bishkek (cooked on a stovetop), vacation rental in Issyk-Kul (cooked in an outdoor kitchen), Ala-Archa park (cooked over an outdoor fire).

Shashlik is usually served with sliced raw onions soaked in vinegar. This is a simple addition that adds so much dimension to the meat. I plan to eat and serve with grilled meats with this addition more often back in Chicago.

The entire fame (3 generations in this picture) is involved in making a meal. The dough is rolled out, cut and then stuffed with meat filling to make manty

The finished manti are arranged on a steaming platter. Several of these platters can be cooked at once. Manti can be served plain or with a sauce, such as ketchup, soy sauce, or sweet chili

Noodles are hand made and then portioned out to individual serving sizes. Aiday’s family are masters of making all sorts of doughs and pastas

Meat, vegetables and broth are cooked separately from the noodles. This as from the outdoor kitchen in Issyk-Kul

Lagman was made in a large kazan (left).

Tea was made in a samovar (middle). The heat source is wood burning, with the chimney for exhaust.

Shashlik grilled over a wood burning flame. The wood was chopped by the teenage cousins (Aiday’s nephews)

Aiday’s sister and brother-in-law cooking lagman in Ala-Archa National Park. For this meal, all the raw ingredients were prepped and cooked on-site

Finished home cooked lagman. It is easy for me to eat 2+ bowls of this

These were incredibly juicy and tender, as they were constantly sprayed with water during the cooking process

Another course from our Ala Archa outing - lots of horse meat and sausages

Similar to the freshness of the meats, fruits and vegetables are natural, organic and very tasty. Fruits and vegetables, as well as honey from the mountains, are grown by families and/or wildly. As such, they taste vibrant and flavorful, without the large size that may be visually appealing but diluted in flavor. In central Bishkek, you can’t walk for more than a few blocks without encountering someone selling fresh berries. In the main bazaars, we were able to buy liters of jams made with the fresh fruit. This added to the jams that we made from fruits from Aiday’s families’ gardens. For the cost of a pint of fruit at a farmer’s market ($6-7 in Chicago), we could get ~1 kg of fresh fruit that tasted even better.

It was also fun for Charles to literally shake the tree to get fresh fruit from the side of the road. Apparently, this is common practice in Kyrgyzstan, as we were not the only ones who were doing it.

Fruit stands besides road are common. In Bishkek, every few intersections will have vendors selling smaller fruits

We ate fresh fruits nearly everyday for breakfast, including strawberries and raspberries bursting with flavor and delicious apples

We stopped by the side of the road to get fruits by shaking a tree

As this as unplanned, we used a niece’s hat to collect the fruits

Kyrgyzstan - Favorite Dishes & Restaurants

Our favorites restaurant meals in Kyrgyzstan featured both traditional native foods and some ethnic cuisines. For traditional local foods, we liked to eat at Navat, Faiza and Supara. For non-Kyrgyz foods, a place called Pa-Puri, serving Georgian food, was our favorite - we went 5x! Another place that we enjoyed was Usta, a Turkish steakhouse. This is a decidedly more upscale restaurant with prices that are high for Bishkek but still a bargain relative to the quality of a comparable US restaurant.

Somewhat surprisingly, there are a lot of western and Asian foods available. There are a number of pizza chains and some larger restaurants menus offered it as well. Sushi and “ramen” were also widely available. But being available didn’t mean that we ordered it more than once after sampling. When we tried the ramen, it was basically instant noodles with a thinly flavored broth, rather than a rich broth that had been simmering for hours. The pizza had the look and basic ingredients of a pizza, but the crust was flavorless. We went to a Japanese restaurant one night and was excited by the decor and menu, but ended up disappointed by the sushi. We are hoping that her family will get to try more authentic and flavorful versions.

One of the most popular restaurant chains in the country is KFC. At food courts, the line is always longest at the KFC, with a large percentage of orders going out for delivery as well. Its appeal is undeniable. The flavor is good and the smell of fried chicken is intoxicating. The quality is similar to fried chicken in the US and other parts of the world.

Khachapuri - Georgian “pizza” with cheese and egg

Khinkali - this is the Georgian version of a dumpling, with a dough that is twisted. We ordered this with beef, lamb, and cheese fillings

This is one of their signature dishes. It’s like a pot pie with a dough topping and a stew inside. This was very flavorful, with spices beyond salt and pepper

A signature dish of lamb ribs cooked in a salt cake. Part of the presentation is a show, where a chef comes out, pours alcohol over the dish, lights it on fire and then dramatically breaks the salt with a hammer. The ribs are unwrapped and then seasoned Salt Bae-style and served with a large knife. Over the top, for sure.

Grilled meat platter

With respect to favorite restaurants, we returned repeatedly to Faiza, a local staple. It serves excellent versions of local foods at reasonable prices. The restaurant is usually busy, requiring a short wait. Navat is another reliable place, with several locations throughout Bishkek. In addition to the quality food, two other things stand out. First, their menu is very helpful, as they have English versions with pictures (see the link). Also, the location near our apartment has a kid’s play room, with an attendant. This is a brilliant idea that I wish would be implemented in the US. Families can go to lunch / dinner and let the kids run around and play in the room without trying to keep them in their seat. We met some friends at this Navat and had a leisurely meal and tea while Charles and their kids alternately ate and played. Having an attendant in the playroom also meant that we didn’t need to keep a constant eye on them.

Children’s playroom was right behind our table. It’s filled with lots of toys and activities, so children can play while adults can eat

The decor is always colorful in this restaurant

Supara is both a restaurant complex and a yurt resort. I’ll write more about our experiences there in a separate post, as we stayed at the yurt resort for a few days.

Here are some photos of favorite local foods from these restaurants.

This is one of my favorite versions of lagman. I don’t see it on the menu at places, but a restaurant in Tokmok serves it

So many different types of lagman on the table. The fried boss lagman is bottom left. Other versions have plain noodles that can be mixed with meat & vegetables or egg & tomato. This is the same restaurant in Tokmok

This version has some liquid. This is from Arzu, a more upscale restaurant in Bishkek. A plate of lagman costs less than $4 at most restaurants

My favorite style of lagman is the stir fried boso lagman. To me, this is similar to mee goreng, a Singaporean fried noodle dish. This example is from Faiza

Fried pelmeni was new to me this trip. I loved it and ordered it each time we went to Faiza

Grilled meat skewers is a way of life in Kyrgyzstan. This is from a well known restaurant in Ivanokova that focuses on shashlik

A variety of grilled meats from Supara

Getting ready to eat a chicken shashlik at Supara

This soup featured meatballs, noodles and dill

These are perfect foods for a road trip. We usually buy a bunch and then eat during a rest stop

Ashlyan-fu was a dish that I fell in love with on this trip. Our itinerary included a few days in Karakol, on the eastern edge of Lake Issyk-Kul and less than 100 miles from the Kyrgyzstan-China border. This is the iconic dish that is synonymous with the city and its Dungan influence. Dungan’s are a Chinese-Muslim minority.

The dish is a cold noodle soup. There are two types of noodles - long wheat noodles and a wider starch noodle. To this, a spicy and vinegar soup are poured over. The dish is topped with sliced / crumbled eggs and scallions. Extra spicy sauce is optional, but its addition is always approved by the vendors. The other beauty of this dish is that it can be prepared and served literally in seconds, as the bowls with the noodles are already portioned out. Also, the cost of a bowl of ashlyan-fu is around 50 som, or less than $0.60 each.

The first day I tried ashlyan-fu in Karakol, I went to 4 different places and had a bowl at each. I would go back to any of them and slurp down a few bowls. Even if I don’t need to cure a hangover (rare these days), the bowls are tasty on their own and if they improve health, so much the better! Some restaurants in Bishkek and outside of Karakol serve ashlyan-fu but the ones in Karakol are much better.

My first bowl was at Dastokorn, a restaurant with a broad menu, as part of a larger dinner order

This bowl was from a restaurant in Karakol’s main bazaar

My second bowl that afternoon was from a restaurants a few steps away in the same main bazaar. There are slight differences in the ratio of spicy and vinegar between the bowls. Both were excellent

Ashlyan-fu is often served with a side of piroshki, a just fried bread stuffed with a thin layer of potatoes. The optional hot sauce is also on the table

This bowl came from Saidi’s in the Ashlyan-Fu alley. Several shops in that market serve the dish and this is one of the most famous ones

Uzbekistan

We quite enjoyed our dining adventures in Uzbekistan. Charles, Aiday and I traveled there, so only 3 mouths to sample the food but we were able to take in quite a lot. In fact, several of our most memorable meals from the trip were eaten in Uzbekistan.

The cuisine in Uzbekistan has a great deal of overlap with Kyrgyz and other Central Asian cultures. There are a few notable differences, such as i) plov, ii) nan (or non) bread, and iii) wineries. In addition, it seemed that because cities like Samarkand and Bukhara were important capitals and trading centers along the Silk Road, there was a greater variety of spices and influences reflected in the food.

Uzbekistan is probably known most for its plov, and each region has its own variations and specialties. As plov is quite a hearty dish, this is typically served only at lunch. In a way, it’s analogous to BBQ joint - vast quantities of food is prepared starting early in the morning and the restaurants close when they sell out.

One of our first stops in Tashkent was to visit Besh Qozon, near the TV tower. This is one of the main centers of plov, where many varieties are available. I heard that they sell 1.5 tons of plov per day, all within a 3-4 hour lunch window. I was somewhat surprised that anyone could walk into the kitchens and get up close and personal to all the different plovs. It was also interesting to witness the different sizes of kazans - some were more than 6 ft in diameter - and the different styles of plov. For example, the ingredients in Bukhara plov are cooked separately and then combined at the end. Samarkand (also known as osh) plov is cooked together but not mixed. Wedding plov cooks all of its ingredients together. In terms of the ingredients, all plovs have rice, carrots, onions and meat. Some versions add raisins or chickpeas and/or chop the vegetables differently. To serve a plov, the chef will scoop the rice mixture from the kazan onto a plate. It is then topped with chopped meat and then optionally a quail egg, dolma, and/or kazy, a horse sausage.

One thing to note: the kazans are enormous. I don’t know the capacity of each one. However, if you watch some of the linked videos and see how much oil is used to cook the plov, remember that there is a lot of rice, vegetables and meat to be added. There is enough oil, though, to make sure that each rice is cooked individually and does not stick together in clumps.

We went at lunch time and our mouths were watering walking through the kazans and smelling all the plovs. We ended up ordering half portions of 4 different types of plov, as well as the nan bread and tea. The entire meal cost us $21 and we had enough to feed us for at least two additional meals.

Four different types of plov available. At an FX rate of ~13,000 som to $1, each portion was $4 or less

This was one of the larger kazans cooking up plov

Picture of the same kazan, about 90 minutes after the first picture was taken. Most of the plov was served

Our order featured all 4 types of plov, as well as nan (bread), tomato salad, Tashkent tea, and a fruit juice

This has both chickpeas and raisins

This featured chickpeas

There are dried chilis (and no chickpeas) in this version. Not too spicy and I think this was my favorite (all of them were excellent, though)

We added the kazy (horse sausage), dolma and quail eggs

Bread is a passion in Uzbekistan, and there are many different types. As someone who dabbles in making sourdough bread, I like to watch how others make bread. At Besh Qozon, it was mesmerizing. Each piece is prepared and then individually stuck onto the wall of the oven. It was some of the best tasting breads on the trip. Another bread that is prized are the loaves sold around the Ulugh Beg Observatory in Samarkand. These loaves are much heavier - up to 2kg and can last for a while. We bought a few with the intention of bringing them back to the US. Unfortunately, we didn’t take care of them properly and were only able to sample one that we shared in Kyrgyzstan. Another regret is that I didn’t buy a bread stamp as a souvenir - some of the patterns were really beautiful.

Each loaf is stamped and then individually placed in the oven

Many different types of bread sold near the Ulugh Beg Observatory

This loaf had a sweet smell and a shiny glaze. Weighing over 1kg, it cost less than $1.50

Katta Tosh is still one of our most memorable meals from the entire trip. This was a place that wasn’t part of my planning list or a place we sought out. We ate there on a tour between Samarkand and Shahrisabz. It is located just off the road in the mountain between the two cities, and it is a destination - we saw lots of cars picking up boxes of meat as to-go orders. Our driver seemed to be a regular at this place, so we were able to get a table overlooking the valley.

The restaurant serves just one dish - tandoor roasted lamb and the accompanying sides. The meat was spectacular! What makes it so special? Freshness, meat quality, and experience are the primary reasons. The mountain lambs are butchered on site, then marinated with some spices including juniper. The animals are naturally raised - free to roam around the mountains and eat grass. The meat is then cooked in giant tandoor ovens (covered and sealed) for several hours. The only questions when ordering is how much meat (by weight) and the cut. We got a nice mix of ribs and just the right amount of fat (without having to pay for the bones). The side dishes are bread, a tomato salad and some yogurt. But the meat by itself is all you need - so tender and flavorful.

Restaurant is located on top of a mountain between Samarkand and Shahrisabz

Tandoor cooked lamb - some of the most tender and flavorful meat I’ve ever eaten. Simply spectacular

Accompanied by tomato salad, bread and yogurt

Cooking area - 8 tandoor ovens, each of which can fit 4-5 whole lamb each

Multiple levels of lamb meat cooking in the oven

We could feel the fire from these ovens

The restaurant meals in Uzbekistan were also quite good. We had surprisingly good Western-style food the night we arrived in Tashkent (we ate the hotel, as we arrived late and left early the next morning). For our last meal before returning to Kyrgyzstan, we went to a higher-end place called Afsona, where there were more tourists eating than at other places we visited. They served two excellent versions of the achicuk (tomato, onion, basil) salad and cheburek (fried dough). Another dish that we enjoyed quite a bit that was on a lot of restaurant menus was fried eggplant with sweet chili sauce. This seemed to be quite a Chinese dish that I wasn’t expecting in Uzbekistan.

These were some of the freshest and most flavorful tomatoes I’ve ever eaten. From the Fergana Valley

Their version of cheburek, a fried dough with meat filling, was especially tasty. Dough was so airy and light

We were somewhat surprised to learn that Uzbekistan has wineries. Our first dinner in Samarkand was at a restaurant rooftop that overlooked the Registan. It had a wine list that featured local wines and we like the bottle we tried. A tour guide told us about Khovrenko, a wine museum and maker, so we tried more wine at that tasting. The wines tended to be more on the sweeter side and better than expected - quite drinkable and a good value.

Rundweis Uzum Fermer - dry white wine

Half of these were wines, half were sweeter spirits. None were more than ~$15 / bottle

We did make a stop at the Chorsu Bazaar in Tashkent. Its striking dome is well known but as a market, it doesn’t seem to be as prominent as it once was. We didn’t eat there, but we did buy some dried fruits and teas from the vendors, all of whom were happy to provide samples before purchasing.

Tashkent tea is something that we order regularly when dining out. There are many versions of this, but a citrus (lemon or orange) with mint and a sweetener provide a refreshing taste. We brought back some tea with these fruit and floral notes as a nice reminder of our time in the country.

That covers the highlights of food in both Kyrgyzstan and Uzbekistan. I’m hoping to send photos of the sites and places we visited in both countries in the next few weeks, so be on the look out for those. In the meantime, I’ve included some links to videos that show how some of the food is prepared and eaten. These could be a starting point for your own deep dive if you are curious.

Thanks again for reading and coming along on this food journey.

Useful links

• Menus (in English): these will provide additional background of the dishes as well as show pictures

  • Navat

  • Supara

• Youtube Videos: these will show how some of the food is prepared and eaten. These creators have a many more videos about food in Kyrgyzstan and Uzbekistan if you want to dive further

  • Mark Wiens - Street Food in Uzbekistan: includes a visit to Besh Qozon. He has a 6 video playlist of Uzbek food

  • Abroad and Hungry - Rare Seen Mountain BBQ in Uzbekistan: includes a segment on Katta Tosh

  • Bohemian Kitchen - Kyrgyzstan Nomad Village Food: shows how samsa, kaymak and manti are made. He has a 7 video playlist of Kyrgyz food

In short, both visits went very well. There are still no signs of cancer returning on the scans. The surgery also went according to plan, and the recovery process has started well. In addition, the January trip went so well that I managed to gain 5 lbs! We also managed to return to Chicago before the southern storm impacted travel in Houston and other states.

Cancer Follow Up - 17-18 Dec 2024

Overall, the news remains excellent - still no visible signs of cancer from the scans and my quality of life remains quite high. The side effects of radiation and immunotherapy remain manageable and are not really debilitating. As with before, I continue to have anxiety each time I have a scan, but in other ways, the trips are becoming a little more routine, with not a lot of changes expected.

The schedule for this trip was slightly more relaxed than prior trips. I arrived on Tuesday morning, had three scans (CT, Ultrasound and MRI) that afternoon and then three appointments on Wednesday. Even with the MDW -> HOU flight being 3 hours delayed due to dense fog in Houston preventing planes from landing (we even got diverted to San Antonio to get more fuel), I was able to make all the scans on time. The consultations on Wednesday were with my usual doctors - Dr. Phan (radiation oncology) at 9:15am, Dr. Barbon (speech therapy) at 9:45am (wishful thinking) and Dr. Gillison (medical oncology) at 1:30pm.

Because of the more routine nature of the visit, I didn’t have as many questions or concerns, i.e. I didn't have a long list of questions that I usually do. There were two main topics in my discussions:

• Scan results

• Tightness in my right side jaw and neck muscles

Clear Scan Results

My first appointment was with Dr. Phan at 9:15am (previously I’ve seen him the afternoon, when the wait times tend to be longer). He is very positive, once again starting with being “very pleased” with the results of the scans. He said there remains no visible tumor and that all the surrounding structures continue to recovery well. I’ve also made it past the period when some of the radiation side effects, e.g. infection and inflammation, are at higher risk. Dr. Gillison also noted that there is “no enhancement” on the scans. When I asked if that meant the scans looked “normal” she clarified that my scans will not be normal relative to most people, but it’s excellent compared to someone who’s had radiation.

Dr. Phan talked about how my SBRT course may be in the “sweet spot.” As a reminder, I had 4 treatments of 9 Gr each, so 36 Gr of extremely targeted radiation. He said that patients with 3 treatments had a higher rate of recurrence and patients with 5 treatments tended to have more side effects.

Fibrosis on My Right Side

My chief complaint over the past few months is the increased frequency of tightness on the right side of my jaw and neck. Fortunately, this tightness isn't too severe in that the muscles don’t fully seize/spasm, and I can resolve it quickly. To me, it feels like the pre-cramp stage.

I first talked about it with Dr. Phan. He said that this is a continued effect of radiation. The 2018 radiation is the primary culprit, as my neck was in the radiation field. Dr. Phan said that the 2023 SBRT hit the upper part of the right side of my head, so that is also contributing to it. Dr. Gillison was quick to call it fibrosis. Unfortunately, this remains a progressive long-term side effect, i.e. one that will continue to get worse over time, with some effects starting several years after receiving radiation. She even mentioned that I may have an earlier onset of age-related carotid artery issues, as my artery was radiated.

Both mentioned needing to stay on top of my stretches and exercises, as these will keep my functionality at current levels as long as possible. I’d previously done a course of rehab at Rush PT and I had already made an appointment to see my therapist again in Jan. I may have to start going more regularly again and potentially change my home program.

I talked about this tightness with all of my doctors, and all of them did a manual exam. They all had similar results - the right side of my neck was a little stiffer than the left side. Overall, though, the muscles remain pliable and softer than other patients who’ve had radiation. I’m not sure if I’m more sensitive to my condition, but I do want to make sure I can enjoy eating and food as much as possible.

My home program included a few stretching and strengthening exercises. I’ve also done some self massage on the outside of my jaw. Dr. Phan suggested doing massage on my right side neck muscles, from in front of my ear down to my collarbone. He even suggested using a two prong massage gun to the area for a few minutes a day.

Dr. Barbon and her team are the ones who can provide the more actionable plan to maintain function in my neck. They were aghast at Dr. Phan’s massage gun suggestion, so I then stopped searching Theragun’s site for such an attachment.

With respect to my home program, they want to continue with all of my exercise, plus adding a new stretch for my jaw. There was a small change to the TonguePress routine - that should go back to a maximum duration hold instead of a timed hold. That will help address my tongue fasciculations (intermittent spasms).

Thyroglossal Duct Cyst Excision - 14-20 Jan 2025

We returned to Houston 14-20 January 2025 to get surgery to remove my thyroglossal duct cyst. For this trip, Aiday and Charles went to Houston as well, and we stayed with one of Aiday’s friends. Overall, the trip was excellent - the surgery and recovery are going well; we got to visit friends; we ate fantastic food - both homemade and exploring more restaurants; we experienced warm weather; and we left just before Houston shut down for a once-in-a-generation snowstorm.

Prior to the trip, I had developed a case of hiccups. It started the evening of 9 Jan (Thu), and it persisted for several days, through 18 Jan (Sat), the day after surgery. The hiccups were bad enough that it affected my sleep over the first weekend. I was hiccuping continuously every 5 seconds or so. The worst feeling was when my diaphragm contracted several times in a row, which meant I couldn’t get a breath in for a bit - I was gasping for air. My concerns were a) whether it would affect the surgery and b) how it might cause undue pressure on my neck wound during the recovery period.

After 3 days, I discovered that eating food gave me temporary relief. Thus, I was eating ice cream just before going to sleep. On more than 1 night, when the hiccups woke me up, I went to the freezer to eat some more after 1am. Granted, it was a delicious way (particularly Jeni’s Brown Butter Almond Brittle) to get some sleep, but not really a healthy, sustainable option.

We met with Dr. Maniakas, the ENT surgeon, and his team on Wed, 15 January. The hiccups were still present and he noticed right away. Fortunately, with respect to the surgery, anesthesia would temporarily knock out the hiccups and immobilize my muscles, so no surgical risk.

My surgery was scheduled for the first procedure Friday morning, with a 5:15am check-in. Aiday and I went straight to the surgical floor, changed into a gown and then waited. The anesthesiologist came in and let us know that even though I’d wake up from anesthesia after the surgery, I won’t have any memory until ~90 minutes later. Those 90 minutes are not the best time to make major life decisions or make promises. I’ll have to make sure that Aiday doesn’t have any recordings of our conversations during that time…

At 7am, I was rolled out of the pre-op room and given some shots. I don’t have any recall of anything from 7am-11am, when I remember waking up in the recovery room (the surgical note says I woke up in the OR, but I had no recollection). At around 9:30am, Dr. Maniakas told Aiday that the surgery went very well and that he removed the main cyst as well as a smaller cyst. There were no complications or surprises, and the timing was as expected.

I was a bit groggy in the recovery room and was drifting in and out of sleep. My neck felt a little sore and swollen but not in pain. We moved to my hospital room (P1231A) a little before 1pm. When I transferred from the recovery bed to the hospital bed, I was a little unstable, but didn’t fall down. The hospital bed was where I spent most of the next 24 hours.

Given that the overnight stay at MDACC was to observe me and make sure there weren’t any complications (especially since the operation was through my neck), the nurses came in check every 2 hours or so. I had IVs in the back of both hands, with one connected to provide fluid. In addition, IPC cuffs were placed around my legs to prevent blood clotting. It was like getting a little continuous massage around my calves. The issue with being connected to both devices is that every time I needed to go to the bathroom or get up, I had to call a nurse to help me.

Preparing to leave the pre-op room at ~7am

Moved to hospital bed just before 1pm

To prevent clotting

The meals at MDACC were better than expected and plentiful. So much so that all my research into what and how to order food for delivery to my room was moot. The first meal was restricted to a clear liquid diet. My “lunch” was chicken broth (instant, as it turned out), tea (no cream or sugar), water, apple juice and a popsicle. It wasn’t the most satisfying meal, and not one that Aiday was particularly eager to share. She left the room late afternoon to go back to take care of Charles and see some other friends, as there wasn’t much else to do at MDACC.

Fortunately, Dr. Kevin Li (a 3rd year resident) saw me before dinner and approved a soft food diet, since I was able to eat the first meal without any issues. I felt famished, as I hadn’t eaten solid food since dinner the night before. The MDACC menu suggested some limits on the order, and I think I reached those. Dinner included tomato soup, fettuccine alfredo with minced chicken, mushrooms, mashed potatoes, ice cream with caramel source, tapioca pudding, and a tropical fruit smoothie. The portions were Texas-sized, so I didn’t finish everything.

After dinner, I got help to disconnect me from all the devices and put a robe to cover my back so that I could take a brief walk outside my room. I only ventured out to the hallway and did a few laps around the floor. As I was still in my socks and gown while also pulling around my IV fluids, going any further wasn’t really an option. There wasn’t anyone else besides the nurses in the hallway, so just a short solo excursion.

Shortly after returning to my room, the hiccups returned at around 9:15pm. It seemed like the anesthesia had worn off enough (after 14 hours) to no longer fend off the hiccups. The nurse was able to contact my doctor and get a Rx for baclofen, a muscle relaxant. In addition, when my second dinner order arrived (a milkshake and chamomile tea), it was 9:30pm. The delivery man went above and beyond to fulfill my request for more ice cream, since that was helpful in relieving my symptoms. The food service normally closes at 9pm, but he returned with 4 giant scoops of vanilla ice cream. The combination of the baclofen, the ice cream (I didn’t think the chocolate milkshake was necessary at this point), and lying down all helped to relieve the hiccups and allow me to get some rest.

Granted, post-surgery overnight observation meant that a nurse came in every 2-3 hours to check in (any pain?, breathing issues?), take vitals and draw blood. It wasn’t the most restful night of sleep. At around 6:30am, Dr. Li came back in again. He ended up changing my dressing twice. He first put on a typical gauze and tape dressing, but after consulting with Dr. Maniakas, he put on a pressure dressing, which consisted of a much thicker gauze and more tape. The tape was applied in such a way that it restricted my neck movement, i.e. I had to turn my body to look over my shoulder.

During the change was the first time I got to see my neck. Dr. Maniakas said that the incision would be ~3cm and that he would use the existing skin folds in my neck. Thus, there won’t be much, if any, of a “cool” scar left behind. Steri-strips were used to close the wound (no sutures or stitches), and they will eventually fall off in a week or so. The doctor also removed the small “rubber band” that was used as a drain. There was a little blood and fluid that came out when he removed it. Overall, though, the drainage was deemed normal, but the pressure dressing was still used as a precaution because of the prior radiation to the area.

This was considered normal drainage

Getting ready for discharge

The recovery was starting as expected, which meant I could get a discharge at around 11am. I spent the rest of the morning watching the Premier League on TV and changing back into my normal clothes. For my breakfast, I used the MyChart functionality to order. I actually could have ordered even more than I did. What I ordered was over 2000 calories, and included an omelette (cheese, turkey, mushroom); waffles w/fruit, syrup, whipped cream; refried beans; gravy; yogurt; smoothie; warm apple pie with vanilla ice cream and caramel; tea and OJ.

Fettuccine alfredo with minced chicken; mushrooms; tomato soup; smoothie; ice cream

Another large portion - omelette; pancake; apple pie plus ice cream; drinks

I had (over) ordered dinner and breakfast assuming that a high protein, high calorie diet would be needed to help my recovery. However, Dr. Li said that I just need a normal diet. Both he and Dr. Maniakas said that I could resume a regular diet without restrictions, even spicy and crunch foods, about a day after surgery. The surgery itself did not affect my throat, though they placed a breathing tube that could cause irritation and hoarseness in my voice.

Unfortunately, The hiccups did come back at around 11:30am, roughly 14 hours after taking the baclofen. That was the only issue of note. For me, the discharge process included getting transport, so I had to wait for a wheelchair to bring me down to the patient pick up area. I was fully mobile, but the issue is that I can’t strain or lift anything over 10 lbs for at least 2 weeks, so I needed help with little backpack with my devices (laptop, iPad, etc.).

I hope and expect that the the recovery will continue to go smoothly. For me, the key challenge will be to remember to take it easy for the next two weeks, particularly after the swelling subsides, and I feel and look normal - no swelling or pain and no surgical strips on my neck. Doing normal things like grocery shopping, changing lightbulbs, looking straight up, picking up Charles will be off-limits, let alone strength training or yoga.

This visit was a slightly different interaction with MDACC than I am used to. For my regular follow up visits, I walk all around the main building, going from Elevator A (where medical oncology, ENT, speech pathology are located) to Elevator G (where radiation oncology is located) and sometimes to Mays Clinic, the Atrium, the Cafe and other parts. This time, I went only used one elevator bank and did not see any other parts of the facility.

After being discharged, the recovery continues to go well. Dr. Maniakas called me on Sunday morning to see how things were going. In addition, he told me that the biopsy of the cyst came back and that it was completely benign. That is a relief, as that was the expectation. As far as the surgery, he took out a second small cyst. He also told he took out the pyramidal lobe of the thyroid. That shouldn’t have any change in the function, so I don’t think I need to increase my medication dosage. In addition, the hiccups seemed to have resolved. After taking baclofen on Sat night (after intermittently hiccuping throughout the day), the hiccups have stayed away. I’ve taken a baclofen every night to make sure they don’t return. (I got an urgent referral for a neurology consult at UCM, but that is not until 10 Feb.) I haven’t had any pain since the surgery. I had a little bit of itchiness around my neck from the tape/dressing but with the pressure dressing no longer required, my neck is starting to feel more normal. My neck mobility seems pretty close to normal without the tape.

One change that I hope is temporary is that my jaw muscles seem a little stiffer. I think that is likely the result of not being able to do my speech rehab exercises - no EMST, no stretching, very limited massage, etc. In addition, I have a little more swelling under my chin. Hopefully that will go away as well.

Houston Eating

The non-medical aspects of the trip were fantastic. We stayed with one of Aiday’s dear friends from when she lived in Houston. Their home is in Friendswood, a suburb ~40 minutes southeast from the medical center, and located near Pearland/Webster and the Space Center. We got to spend quality time with Zulai, Lauren (her daughter), Lucky (their dog) and other friends. Charles was particularly fond of playing with Lucky, perhaps because he seems to enjoy dogs and/or he didn’t have anyone his own age to play with for most of the time.

We visited the following restaurants and these were some of the highlights. We didn’t go to Katy or Asiatown, but the diversity of food available is still very impressive. It was nice to “introduce” some of these restaurants to our Houston friends and get to visit them together.

• Home cooked meals, including lagman, manti, oromo, rotisserie lamb chops and salads. Zulai is an exceptional cook, and these are Kyrgyz favorites. She made enough lagman the first night that we could it eat it for breakfast everyday the rest of the trip. More about Kyrgyz and Central Asian food to come in a future blog post

• Kasra Persian Grill (new): Wed lunch. Many excellent options, including mirza ghasemi (roasted eggplant), beef kubideh and shrimp kabob.

• Loro Asian Smokehouse (new): Wed dinner. Concept by Tyson Cole (Uchi) and Aaron Franklin (Franklin BBQ), so a mix of BBQ and asian flavors. I crave their smoked shishito with brisket

• Killen’s BBQ: Thu lunch. The brisket tacos were huge and flavorful and quite a good deal - $15 for 3 giant tacos. Charles especially loved these tacos

• Mala Sichuan Bistro: Thu dinner. Long-time favorite for spicy foods. The water boiled fish and dan-dan noodles were favorites

• Fung’s Kitchen (new): Sat lunch. This is where we went straight after discharge from MDACC. They still serve push cart dim sum

• Pappacito’s: Sun dinner. Though we like other Tex-Mex places, this is reliable and nearby. The steak fajitas were the best item we ordered

• Aga’s: Mon lunch. Aiday had not been here before, and it’s a place that is opposite direction to Hobby Airport from MDACC, so a good opportunity to visit. It was our last meal before flying back. The goat chops, butter chicken and chicken chaska boti are crave worthy

• Desserts: we got pastries and tea from 85C Bakery, ice cream from Baked Bear and milk + sugar. Charles was especially excited for the freeze-dried astronaut ice cream from the Space Center

Here are pictures from the home cooked meals.

Some favorite dishes from restaurant meals.

Appetizers, including mirza ghasemi (roasted eggplant with egg)

Grilled meats - beef kubideh, chicken kubideh, shrimp kabob

Smoked shishito quest with brisket

Charles loved the brisket tacos, even more than his usual chicken tenders and fries

Dan-dan noodles

Water boiled fish, with napa cabbage and leeks

Final lunch before returning to Chicago

Butter chicken - sauce was incredibly rich and flavorful

Grilled goat chops - one of their most popular dishes

Chicken chaska boti - a slightly milder sauce

The visit was mostly about getting together with friends over food, so just a little bit of sightseeing. I took Charles back to the Space Center to look at more rockets and space vehicles. I have to admit that the Astronaut Training Facility tram tour was a little disappointing. It only lasted about 45 minutes (including transport time) and there wasn’t much to see from the galley. We could see mock ups of various elements of the ISS but there wasn’t an interesting film or presentation.

Given our base in Friendswood, we had originally considered going to Galveston on Sunday for a quick visit. The attractions include the Galveston Railroad Museum (for Charles) and some places to get gumbo and gulf oysters (cooked versions better than raw). However, while the weather was nice and warm through Sat, the freakish winter weather started on Sunday. It was windy and cold, so the thought of visiting the beach in 35F and blustery conditions, one day after discharge, became less attractive. Staying at home, eating leftovers, and watching NFL playoff games was just fine.

In fact, our scheduled return flight was just in the nick of time. I had booked a 5pm flight on Monday, 20 January. Though I had tried to change to an earlier flight that day, the 5pm worked out well. It was cold that day, but the snow didn’t start until early Tuesday. In fact, MDACC had decided to shut down several clinics and rescheduled appts and surgeries for 21-22 Jan. Similarly, the airport and schools announced closures for Tue/Wed, as Houston is not equipped to handle this storm that brought 3-6” of snow.

Returning to Chicago presented its own challenges and opportunities, particularly as it related to the no lifting restriction. Normally, when traveling with Charles, I tend to carry a lot of bags, but that wasn’t possible this time. I was advised to ask for wheelchair access and assistance in boarding the plane. It’s a good thing I got it, as I didn’t check in until Monday morning and our Southwest boarding number was C52-54, i.e. the last go get on to a full flight. Instead, I was pushed to the gate without carrying any bags, and all of us were able to pre-board. We sat together in row 3. We also had a wheelchair for de-planing, who brought us all the way to baggage claim.

From there, Aiday was a superwoman. She loaded all the luggage into the car. She also unloaded everything and carried them up the stairs into our condo. She did all of this in 0F extreme cold. All I had to do was to hold Charles’s hand and walk up the stairs.

Thanks again for reading and support. I return to Houston in mid April for my next regular follow up. We have some fun travels before that, so hopefully I’ll post more travel and food photos.

Dr. Phan (radiation oncologist) wants to see me again in 3 months and then move to a 4 month follow up interval after that. The potential issue is that I also want to have surgery to remove the TDC on my next visit, but a return visit just before the holidays and New Year isn’t ideal for recovery.

The visit to MDACC came 10 days after our return from a six week trip to Central Asia - Kyrgyzstan and Uzbekistan. More to come on that trip - I’ll try to post pictures with captions rather than a long narrative to read. The countries are beautiful, though in different ways - Kyrgyzstan for its untouched, natural beauty, Uzbekistan for its historical structures as the capital of the Timurid Empire and being key outposts on the Silk Road.

Prior to planning the trip, I checked with the doctors and nurses, and everyone told me that pushing back my regularly scheduled immunotherapy infusion by ~2 weeks was fine. During the trip, from a health perspective, I felt normal. There were no new or unexpected issues - just the ones I’ve been managing for a while, primarily dry mouth, swallowing and jaw tightness, and skin rashes. The dry mouth was slightly worse than usual (similar to when I was there in October 2023). But overall, I didn’t feel any different than normal.

MD Anderson Visit

This trip to MDACC was slightly longer than my usual 2 day/1 night schedule. Because I was getting the additional CT and ultrasound scans, and there was no afternoon availability, I had to fly in on a Monday night. My Tuesday schedule was light, with just the two scans that don’t take very long once they started. The Wednesday schedule was the typical MDACC schedule - a scan in the morning, followed by 4 consults before catching my return flight to Chicago that night.

Since March 2024, when I got news that the tumor had resolved (no longer visible), my goal for these visits is stability. Even when there is great news, my feeling is more of relief than of elation or joy. That doesn’t mean I don’t get nervous before hearing my results - it’s more that a good outcome is what is hoped for and expected but a bad outcome would be devastating. The goal is to continue on maintenance immunotherapy for another year - through August 2025 (two years after SBRT), at which point the risk of recurrence decreases significantly.

On Wednesday, the MRI this time was at a reasonable hour - 9am (vs. the 6am scan time on previous visits). As a veteran of MRIs, the procedure is fine for me - I can lay still for the 45 minute, and I know what to expect. I didn’t expect a radiologist to formally read the results before seeing the doctors, as on my previous visits, the results were available that quickly. Mentally, I thought I would be fairly relaxed that morning.

Prior to my first appointment, the team took my vitals. My body seemed to be more nervous than my mind, as my blood pressure was 156/94. Not as high as some of my other nervous periods, but it seemed like my body was more nervous than my mind.

My first consult was with Dr. Maniakas, an ENT. I first met him, in June when he squeezed me in after the discovery of the duct cyst. He has a very positive and pleasant demeanor that I like a lot. He started off the visit by mentioning that all three scans looked great. I wasn’t expecting him to read the MRI, but he said that it didn’t show any tumor. That was definitely a relief, even if he had mentioned it in passing.

The main topic of my visit with him was to decide on the course of action for the thyroglossal duct cyst issue. The CT and in particular the ultrasound were the more relevant scans in terms of TDC. Dr. Maniakas first remarked that the lymph node that was biopsied previously was stable and didn’t change in size. I had almost forgotten about that issue since it hasn’t been of concern for while (and I haven’t had a PET scan recently). For the TDC, he said that there was no change and that the inflammation had decreased since my last visit.

As for the next steps, and we came to conclusion that a surgery to remove the TDC sooner rather than later is the best course of action. The risk of waiting is that if I get another infection before the TDC is removed, the surgery and recovery from it become more complicated as there is more scar tissue. He said the surgery is fairly straightforward and not high risk, despite being in my throat area. Given what he sees on the scans, he doesn’t think there is a need to remove my hyoid bone or my thyroid gland, so only the TDC would be removed. He won’t know for sure until he starts the surgery, but he was confident that the surrounding structures would be intact. So that is good news.

As far as scheduling and recovery, Dr. Maniakas is in the OR on Thursday and Friday. So I could do my normal MRI and consults and Wednesday and then have surgery early on Thursday (as in check in at 5am). Post-surgery, the protocol is to have overnight observation in the hospital, as the rare complications could be serious and would need to be addressed immediately. There shouldn’t be much pain that requires more than a Tylenol. I would be discharged on Friday and then can fly back that day. So the trip would likely be a Tuesday-Friday.

The recovery from this surgery should be full and complete, after two weeks. The first day is a liquid diet, followed by soft foods the next day or two. I should be able to resume a normal diet after that. However, the main concern is around “heavy” lifting. Dr. Maniakas said that I can't lift anything over 10 lbs for 2 weeks post-surgery. Logistically, that means traveling with a roll aboard (and asking the flight attendant to put it overhead on my return flight) and not bringing a backpack or any other bag. Finally, there shouldn't be a noticeable scar - he said the incision would be in one of the natural folds in my neck. Overall, the benefits of having the surgery seem to outweigh the risks, so I’ll plan to schedule it soon.

After a short lunch break, my next consult was with Dr. Phan. After Dr. Maniakas broke the good news about the MRI, my blood pressure came all the way down to 127/86 (from 154/96 before learning of the scan results).

I didn't see Dr. Phan on my previous visit, so it was nice to get his opinion this time. He was very upbeat and his positivity was beyond my expectations. He confirmed that not only is there no tumor visible, but the surrounding structures continue to heal very well - less inflammation. He said that around this time is when there may be flareups, but I’ve avoided those again. Dr. Phan was “very happy” with more improvement to come. Unlike previous visits, he didn’t show me the images from the MRI, perhaps because there is nothing of note to see. I was a little surprised that he wanted to see me again in three months vs. four, though.

Dr. Phan and I actually spent a decent part of my consult talking about my recent travels to Kyrgyzstan and Uzbekistan. He said that he is looking to make a trip, so I showed him some pictures and talked about some of my experiences.

Remarkably, I remained on schedule, which had me at 1:00pm with Dr. Phan, 1:45pm with Dr. Barbon and 2:30pm with Dr. Johnson. I was a little bit anxious to see Dr. Barbon - the kind of anxiousness that comes from not having done my homework knowing the teacher would review it. As I had been traveling in Central Asia, I didn’t maintain a regular rehab routine for my swallow, speech, tongue and mouth exercises. Fortunately, Dr. Barbon was understanding of the situation and encouraged me to get back to my routine. In addition, my movement and strength were relatively stable from the the last time - 43mm opening and around 49 for the IOPI.

That being said, as I think I’ve mentioned before, the speech rehab is probably the most impactful in terms of my daily function and quality of life. Dr. Phan also noted that I need to keep on top of these exercises, as there is a chance things could do downhill quickly because of the cumulative radiation effects.

Overall, I think my function is still fine. I do notice some deficiencies, though. For example, while in Central Asia, some food, especially leaner meats, would get caught in my throat or were more difficult to swallow. I’ve also noticed that my neck/jaw muscles have stiffened more frequently - not so much that they seize up and I’m temporarily incapacitated, but enough that I need to do self massage on them. I notice this sometimes after I do my exercises, which tells me that I need to get back to my regular routine.

My final appointment was with Dr. Johnson, a medical oncologist. She was filling in for Dr. Gillison, who was away at a conference in Barcelona (most likely ESMO). This was another straightforward visit. The main topic we discussed was skin toxicity, i.e. skin rashes. She reiterated that the longer I’m on immunotherapy, the less predictable the onset of the rashes are. I’ll continue to manage with the triamcinolone, moisturizers and anti-histamines. These help reduce the itching. The good thing is that the rashes are not overly irritating or itchy, so no need to change my planned course of treatment.

Like Dr. Phan, Dr. Barbon and Dr. Johnson were upbeat. That’s of the reason why I actually enjoy the visits to MDACC. The care team has a very pleasant manner and their positivity gives me encouragement.

The only issue now is when to schedule my return visit. I could go back in mid-December to keep on the 3 month interval preferred by Dr. Phan. If I do that, I’ll have to decide whether to make a separate trip to have the TDC surgery or wait until April 2025 on my subsequent followup.

Non-Medical

Given the slightly more relaxed schedule, I was able to have lunch and two dinners in Houston. For Tuesday lunch, I went back to Feges BBQ. This is place I’ve tried to visit several times but each time they were sold out. I went early enough this time and I had a full selection. The place is known for its sides as well, so I got a meat platter with brisket and turkey, along with pimento mac & cheese and sweet + spicy brussels sprouts.

One was a more casual dinner with Josh, a friend from my fantasy premier league group. Coincidentally, we met when we were tied atop the league standings, albeit only 4 weeks into a 38 week season.

I also had dinner at Kiran’s, an Indian restaurant celebrating its 20th anniversary. This is a restaurant that I’ve been wanting to try for a while, and a recent write up by a local Houston critic extolling its virtues finally got me to go. It was a great meal. I opted against the tasting menu and ordered a few items a la carte. I started with the crab malabar, a cold appetizer with jumbo lump crab and crispy okra. Excellent way to start - not too heavy and packed with flavor. The server suggested the Punjabi Thali as my main course so that I could try more flavors. The thali included butter chicken, lamb saag, and prawn bhuna, served with saffron rice, garlic naan, papadum, raita and kachumber salad. She described the portions as “tiny”, but in reality they were Texas-sized. I think there were 4-5 pieces of protein in each of those dishes. I did manage to finish nearly all of it (no leftovers), but didn’t have enough room to try a naanza (pizza) or dessert. All of the dishes were excellent, and the butter chicken was one of the best I’ve ever had. It had just the right amount of spice and a hint of smoke, which I liked. I’ll definitely be back for that. It ranks alongside the potatoes au gratin at Pappas Bros as my most crave worthy dishes in Houston.

jumbo lump crab, mustard seed, fresh coconut, curry leaves, crispy okra

butter chicken, lamb saag, prawn bhuna
saffron rice, garlic naan, papadum, raita, kachumber salad

That’s all for now. Hopefully the medical side of this blog has similar new to the past few visits and there isn’t much new information to process. I’ll do my best to update the travel side, especially with photos (and less narrative).

Thank you again for the continued support.

In short, the news is good. The MRI of my head and neck appears to be stable, so “No evidence of local or nodal recurrence.” In addition, Dr. Gillison said that she expects me to continue my maintenance immunotherapy program through August 2025 without progression. I will continue to return to MDACC every 3-4 months for scans and follow ups. Assuming all goes well, I may only need to see a good local ENT for follow up. That being said, the MDACC doctors are the ones I trust the most right now, so I’ll plan to see them.

In addition, I had follow up visits in Chicago related to my rehab programs and my ear tube, which was inserted shortly after my last Houston trip. That has definitely improved my ear fluid drainage and returned my hearing back to normal levels.

As usual, the blog will go into detail about my visit to MD Anderson, a review of my Chicago rehab programs and a quick note about food.

MD Anderson Visit

On this visit, I had 6 consults and 2 tests over 2 days. Interestingly, I did not have an appointment with Dr. Phan, my radiation oncologist, whose opinion I highly value. When I messaged his team, they said they expected my scans to be stable, so there was no need to schedule an appointment. It was a little unsettling at first, but I suppose his confidence for stable scans is a good sign. At this point, I don’t want anything to change

Since my last follow up visit, there have been a few changes to my health and maintenance routine, including the following:

• Physical therapy at Rush PT for my neck and jaw

• Physical therapy at Shirley Ryan Ability Lab to address lateral scapular winging

• Placement of ear tube: this has relieved the fullness and improved tinnitus

• Rashes on my chest and arms: this usually happens 1-4 weeks after receiving an IO infusion

• Swelling and tenderness in my neck

The most recent issue is the swelling in my neck, which started around 5 June. It actually started with what felt like swollen lymph nodes in my jaw, with the the neck issues presenting a day or two afterwards. This concerned me quite a bit, even though all my tests have been negative. In fact, when I went in for an infusion on 7 June (Friday), my initial blood pressure reading reflected my anxiety - 154/98! It didn’t help that the respiratory viral panel came back negative, so the swelling in my neck was not caused by a known infection. The swelling seemed to increase over the weekend, so I went to see Dr. Lee, my primary care physician, on Monday. At that time, the symptoms were consistent with cellulitis, a skin infection, even though I didn't have a break in my skin that could lead more easily to an infection. Dr. Lee prescribed a course of antibiotics for me and that reduced the swelling.

I finished the antibiotics on Monday, a day before flying down to Houston, and things looked better. My first consult at MDACC was with Brad Smith, an experienced SLP, and he didn’t think it was cellulitis. My swelling didn’t spread the way cellulitis typically would. The next day, I met with Dr. Gillison’s team. She quickly diagnosed the condition as an infection of my thyroglossal duct cyst (TDC). She reviewed the MRI (in fairness, the Chicago team did not have this imaging) and saw the inflammation.

The cyst is a congenital condition, so I’ve had it since birth. As Dr Gillison explained it, the cyst is a remnant of the thyroid moving from the tongue to the throat and not having the duct close properly during gestation. Reassuringly, previous scans noted the likelihood of the TDC. However, it’s not been infected before, so while the presence has been noted on radiologist readings of my prior CT and MRI scans, it hasn’t been a concern.

It was nice that MD Anderson was able to provide a definitive diagnosis and do it quickly. What I like about MDACC is that their doctors know not only a lot about many things, but they seem to know everything about their sub-speciality. They are truly world-class experts in their chosen fields. To illustrate, once Dr. Gillison diagnosed the issue, she referred me to an ENT specializing in throat and thyroid issues. Even though I already had an ENT appointment scheduled to see Dr. Gidley, she got me in to see another ENT, as Dr. Gidley specializes in ear issues but Dr. Miniakas focuses on throat issues. I really appreciate that they were able to squeeze me into the schedule the same morning. The TDC infection was diagnosed at around 10:15am and I saw Dr. Miniakas 2 hours later (after seeing Dr. Gidley). To have access to such expert case is something I’m very appreciative of, especially so readily.

The visit with Dr. Miniakas was very useful and reassuring. He was very clear in explaining the existence of the TDC, what the treatment options are and the associated risks, and the urgency needed to address the issue. In short, it’s not something that requires immediate attention, but it’s something we can do on my regular return visits to Houston. Both he and Dr. Gillison assured me that the infection of the TDC is unrelated to my cancer or the immunotherapy treatment. The concern, though, is that once the TDC is infected, it is likely to be chronically infected. Dr. Miniakas explained that in this context, chronically infected means every 2-3 years, not every few months. That is why it doesn't need to addressed right away. While he did note that there is a <1% chance that it’s cancerous, we do want to rule that out with a biopsy.

The course of how to treat the remnant will be determined after getting an ultrasound, CT and biopsy. We did review some of my previous scans and he showed me how it appears. The duct was present in my 2018 pre-treatment scans, so that does confirm the congenital nature. The options are a) monitor and do nothing and b) surgically remove the duct and possibly the thyroid gland as well. We will re-assess on my September visit. The only issue is that if I do elect surgery, it’s best to do it sooner, before another infection flares up. So that could be an intermediate trip back to Houston between my regular follow ups in Sep and Dec/Jan.

The procedure seems more common in children (most cases of TDC are detected in childhood) than adults. So I’m not sure if an adult removal is more complicated or risky than a childhood procedure. In any case, I think I feel more comfortable with getting the surgery done at MDACC than locally in Chicago. I think the surgery is usually a day procedure (no overnight stay required), but I’d have to see if I need to stay in Houston longer for recovery. Overall, I am glad that we know what caused the neck swelling and that it’s unrelated to my cancer.

Besides my regular follow up appointment with Dr. Gillison and speech, I had two appointments to establish care. One was with Dr. Gidley, an ENT, and the other was with Dr. Sagiv, an ophthalmologist. For Dr. Gidley, I had wanted to see him during my March visit, but the scheduling did not work out. As I had mentioned in my last post, my ear fullness had started around Nov/Dec 2023 and it got to a point where I wanted to address it. I didn’t want to wait until this visit, so I had the procedure done by Dr. Gluth at UCM. It seemed like a straightforward procedure, so one that a good doctor can perform. So far, the ear tubes have been very good for me. My hearing is a lot more even on both sides (there had been a 6 volume level difference using my iPhone and AirPods Pro as the comparison), there is no pressure build up and I’ve fortunately avoided any negative side effects.

The appointment with Dr. Gidley wasn’t necessarily to address any specific issue. It was more so that if I need to see him in the future, we already have a baseline and can schedule appointments more easily. Actually, most of the time in the office was spent with his PA, Matt. Once again, the PAs at MDACC are excellent. We discussed a variety of issues, and he explained things clearly. He was empathetic to the long-term effects of treatment, and how it’ll affect me over time. Some concepts hadn’t been discussed before with other care providers. One example relates to potential hearing loss. Matt reviewed my audiology test with me. In terms of my hearing loss, the test from March showed conductive hearing loss due to presence of fluid in my right ear. That should largely be resolved by the ear tubes. However, Matt explained that the radiation could result in two different types of hearing loss. One is that the hearing bones will lose sensitivity, so I won't be able to hear softer (less loud sounds). The second is that I may not be able to distinctly and correctly make out words. In my current test, I was 100% in my left ear and 96% in my right year (missed 1 word). Dr. Gidley and Matt looked at my radiation fields and said that my right ear received 51 Gr (37 Gr from 2018 and 14 Gr from 2023) and my left ear received 33 Gr (21 Gr from 2018 and 1 Gr from 2023). Hearing gets affected more above 40 Gr. It seems consistent, and likely, that my right ear will continue to lose function. Fortunately, Dr. Gidley explained that this radiation-related hearing loss is likely to take many years, so it’s not something that should affect me in the near term.

Upon exam, they said my ears look to be in good shape. There is some crusting on the bottom of my ear tube, which is to be expected. We discussed whether to try to clean that, as removing the crusts would likely keep the ear tubes in place longer before they naturally get ejected by the body. Matt explained that after the ear tubes get ejected, my ear drum may not heal completely. That is, there may still be a hole in my ear drum. That isn’t necessarily a bad thing from my perspective. Having the ear tube means that there is a pathway between my middle ear and the outside world. On the positive side, that means that I don't suffer from any pressure equalization issues when flying and fewer issues with fluid draining. On the negative side, it means that I have to be careful about infections and allowing things to pass into the middle ear. Matt reminded me that I shouldn’t use Debrox or alcohol-based drops in my ears, as they would cause considerable pain in my middle ear. It also means that I can’t really go swimming or diving at risk of infection. But if the hole in my ear drum closes completely, I won’t have any restrictions on activity.

The recommended follow up is annual hearing tests. If anything comes up in the meantime, I can schedule visits with them.

The other appointment to establish care was with Dr. Sagiv, an ophthalmologist. The impetus for this was my concern about a change in my eyeglass prescription. Ever since I was first prescribed glasses in the late 90s, my Rx has been unchanged (with the exception of the addition of the ADD power for progressive / reading glasses in recent years). It had always been -0.50 / -0.75 with minor astigmatism. When I went to a new optometrist in April, he changed my Rx to -0.75 / -1.25. It was enough that I was concerned whether the SBRT was a factor in this change. I messaged Dr. Phan’s team and they told me that the radiation field shouldn’t have affected my vision, but it was a good idea to get a full ophthamology examination, as I hadn’t had one in a few years. Between the new Rx and the trip to Houston, I got a second new Rx from Dr. Lopez, a Chicago optometrist trusted my a good friend. That new Rx is closer to my previous Rx (-0.75 / -0.75, so just a slight change to my right eye). While there was a change, it was quite subtle. The new glasses I got with the new Rx are ones I’m still getting used to. Fortunately, the change is small enough that I can still use my previous pairs of glasses, if needed.

Chronologically, the visit with Dr. Sagiv and his team was the first appointment in Houston. I landed at 9am on Tuesday and made it to my 10am appointment on the main campus. The good news is that my eye health remains excellent. This exam included some elements that Dr. Lopez performed (OCT of retina and optic nerve) and some new tests - the Humphrey Visual Field test. The latter was to test my peripheral vision and that was fine. In terms of my eye health, the good new is that there aren’t any signs of cataracts, glaucoma or macular degeneration. This is consistent with Dr. Lopez’s exam. Dr. Sagiv’s exam showed no evidence of dry eye, which differed from Dr. Lopez, who wanted to treat me for dry eye in his clinic. For now, I’ll just use a warm compress from time to time to keep my glands in good shape.

The one downside of seeing Dr. Sagiv first was that he dilated me to do the exam. Normally, this wouldn’t be a big issue, but my next two appointments were at MDACC’s West Houston locations, which are a 40 minute drive away. Luckily, Houston was cloudy and rainy these days. Thinking ahead, I brought a pair of prescription sunglasses so I could drive more easily.

Unfortunately, the schedule was too tight, so I didn’t get to my 1pm appointment with Brad Smith until 1:30pm. He is a very experienced SLP and that experience translates to skill. In addition to his analysis of the neck swelling, we reviewed my PT programs at Rush and SRAL and he endorsed them. It’s good to hear that I’m in good hands.

We did talk about two issues that have been of concern. I mentioned that the nasal regurgitation is happening more frequently. In particular, there are times when I drink tea or wine and it comes straight out of my nose. Brad explained the mechanisms that prevent the nasopharynx from closing properly - it involves the palate and another muscle in the back of my throat. To help with keeping the fluid down, he recommended two changes: a) sitting upright (instead of leaning forward), as gravity will prevent the regurgitation and b) lower volume. I’ll try to make those changes, though culturally, I’m used to leaning forward over my bowl when I eat (and taking a drink in that same position), so sitting up with my head back is not natural for me.

The second issue that Brad noticed is that my voice is hyper-nasal. He could hear the air escaping through my nose during normal conversation. I’m not sure this can be addressed through additional SLP exercises. Unfortunately, given the schedule, I only had 30 minutes with him, vs. the expected 60 minutes.

Following that appointment, I was scheduled for my MRI. I didn’t realize that MDACC had multiple locations in West Houston, so this took place in a different building - I visited a different location for each of my three appointments. I didn’t have time to get anything to eat, as I was late for both of the last two appointments.

The MRI was in a location that looked more like a suburban office complex than an MDACC facility. The procedure itself was quite smooth. I was pretty tired from the travel, so I ended falling asleep during the tests. This time, they provided headphones in addition to earplugs, so the noise was less than normal for me.

In summary, I had tests on Tuesday and then saw my oncologist, two ENTs and SLP on Wednesday. The Wednesday appointments were done so efficiently that I ended up taking an earlier flight back to Chicago, in home in time to see Charles before he went to bed for the night.

Chicago Programs
As mentioned earlier, I started two different rehab / PT programs in Chicago in addition to having the ear tubes put in. After my March visit to MDACC, Brad Smith recommended seeing someone in Chicago for manual therapy and to address the fibrosis in my neck. I contacted both Rush PT and Shirley Ryan, as both were recommended. In both cases, the goal was more about maintaining current function vs. rehabilitating a specific injury. So my end goal was probably different from other patients doing PT - during my sessions, I could see people regaining strength and balance while I was more about maintenance.

My first appointment was with Rush and the PT specializing in oncology focused on my neck and jaw areas. I had my last appointment with her on 26 June. After working with her, my range of motion on my neck increased by 10+ degrees! The other good news is that I have not had any full on jaw spasms, which have plagued me since the first radiation treatments.

At SRAL, I saw Dr. Shahpar, whom I had previously seen in 2018. This time, he diagnosed me with lateral scapular winging, which causes my scapula to come out a bit on the right side, particularly when raising my arms overhead. He said this was likely caused, or at least exacerbated, by damage to my spinal accessory nerve from radiation. The program was to strengthen my serratus, rhomboid and trapezius muscles. Dr Shahpar was less concerned about fibrosis in my neck. I went to SRAL for a few sessions with a therapist, and she had me do exercises to address this.

Both Rush and SRAL provided me with home programs, now that my in-person sessions have reached their conclusion. It’s a lot of exercises, with a combination of stretch and strengthening routines (usually with a resistance band). Between all my rehab - tongue, EMST, jaw, neck, scapular winging, it would be over an hour daily. The therapists realize that it’s not easy to maintain this level, so they encourage me to find a routine to do at least some of them a few times a week. That’ll be the challenge for me, as now that I don’t have regular visits to see my therapists, the motivation drops off a bit and I need to maintain that.

My functionality is still pretty good, so I want to do my best to maintain it, both for myself and for my family. So that’s motivation enough.

On a different topic, I asked Dr. Gillison about the recently announced partnership between Rush and MD Anderson. I have been going to Rush for speech and physical therapy, but not for other infusions or other care. In her typically blunt fashion, she referred to the partnership as merely marketing. That is, there isn’t any significant collaboration between the care teams. If she had said that she works closely with a Rush oncologist, I probably would have switched to that doctor, as I think of Dr. Gillison’s (and Dr. Phan’s) advice as the ones guiding my care. I’ll still plan to return to Houston every 3-4 months for the next few years. It is a little strange for me to see the MD Anderson logo in Chicago when I drive by their campus, I have to say.

Houston Food

This trip to Houston didn’t feature much food adventures. My schedule was jam-packed and there was no time for lunch on either day. On Tuesday, I finished my MRI around 3:45pm. I was so hungry that I needed to eat something, so I had a quick milkshake and child-size burger at Beck’s Prime. It was fine but not notable. I didn’t want to eat much because the plan was to have dinner with friends at Aga’s Restaurant & Catering. This is a Indian-Pakistai restaurant that my friends liked. The dining room is not ornate in the way that Kiran’s and Musaafer are and the prices are correspondingly lower. The food was excellent and like other restaurants I’ve been to in Houston, they do not hold back on the spices. It was almost too spicy. My favorite dishes included the grilled goat ribs, the peshwari shrimp kahari (a type of curry) and the fish kata-kat. The mango lassi was also excellent.

Even though my first appointment on Wednesday wasn’t until 9am, I took the opportunity to take it easy vs. waking up early to get a breakfast before starting my appointments, particularly as it was raining in Houston. In hindsight, I wish I would have gone to a place like Gatlin’s to get breakfast and snacks for the day. Instead, I just got some decent, but not exceptional, donuts from Shipley’s.

When my appointments finished on Wednesday, I went straight to the airport to catch an earlier flight back to Chicago. The airport food was disappointing, but there was an outpost of Fat Cat Creamery, so I was able to try some of their flavors. The coffee & cream and strawberries & cream were both pretty good. Not a bad way to end another uplifting trip to Houston.

These are probably the most popular item on the menu

This wasn't overly spicy and had a bit of a smoky flavor

One of the spicier dishes we had

Coffee & Cream and Strawberry & Cream ice cream, with salted almond brittle crumble

Unrelated to Houston food, we celebrated Aiday’s birthday at Moody Tongue, a restaurant and microbrewery we like in Chicago. We’ve been to both The Dining Room (Michelin 2-star) and The Bar side, where we normally go. One of Charles’s favorite foods is The Bar’s 12 Layer German Chocolate Cake dessert, described as “chocolate buttercream, espresso speckled cheesecake, toasted pecan and coconut caramel”. Unlike with other foods where we have to feed him, Charles gets visibly excited to eat this cake and likes it so much that he doesn’t need utensils. That applies to both starting to eat the cake and for licking his plate clean. I don’t know how or why he is so enthusiastic for food…

I think that’s it for now. Thanks again for reading through it. My next trip to Houston is in September and hopefully I’ll have more food exploration photos to share.

We are doing some traveling between now and Houston, so I’ll once again hope to share those with you as well.

The plan is to continue on immunotherapy until August 2025 - two years of maintenance post-SBRT, assuming I continue to tolerate it well. The radiation treatment seemed to work much faster than expected - in prior visits Dr. Phan cautioned that he’s seen cases where the tumor shrinkage doesn’t start until 6 months post-treatment. In my case, there is no tumor visible on the MRI 7 months post-treatment. At this point, I’m cautious not to be too optimistic, as I’m still undergoing maintenance immunotherapy, but I am feeling more hopeful about my prospects. Assuming the results stay this way through August 2025 (another 18 months), I’ll feel even better as the chances or recurring are much lower after that.

In addition, I had follow up appointments with speech pathology. These visits are becoming increasingly more important to maintaining function in my head and mouth, and thus have a positive impact on my quality of life. These visits were also encouraging, as they noted improvement in my swallow ability and were pleasantly surprised by how soft my neck tissue remains after radiation. They did prescribe more exercises and recommended manual therapy (i.e. massage) to maintain and get ahead of any potential side effects.

Going into the follow up, I had normal levels of anxiety but wasn’t overly anxious. Since the first followup in December, I’ve felt good - no change in my energy, taste, appetite, etc. There was one main issue that has been problematic - the fullness and ringing in my right ear. This is an issue that started in late 2023 and has not really improved. At first, I was worried about whether this was caused by the return / growth of a tumor. Given the comments from my last visit to MDACC in December and additional visits with UCM ENT, they believe the issue is related to middle ear effusion - fluid is not draining properly from my right ear, most likely due to the radiation effects. I’m planning on getting a procedure in the next few weeks to drain my ear fluid. The expectation is that my hearing will improve immediately and it’ll be a whole new world!

In summary, the three key takeaways from this follow up are all positive:

1. No more tumor visible on the MRI (it has “resolved”)

2. Speech pathology program is showing improvement in my swallow functionality

3. My hearing issues are temporary and should improve once I get a procedure done

As usual, the rest of this blog will be a lot more detailed. I’ll start with a more journal-like review of my medical appointments. After that I’ll have a few comments about my trip to Houston and food.

MD Anderson Visits

On this trip to Houston and MD Anderson, I did two days of appointments instead of trying to cram everything in to one (very packed) day. I took the first flight out on Tuesday (7am departure) and the last fight back on Wednesday (8pm return). This allowed me to do more speech pathology appointments on Tuesday and have a slightly more relaxed schedule on Wednesday. The focus of the appointments were primarily related to three areas:

• Oncology: MRI scan and consultations with oncologists about the treatment results and plan

• Speech pathology: swallow study and consultations with SLPs to maintain / improve my functional capabilities around swallowing and neck mobility

• Audiology: hearing test to assess how much the eustachian tube dysfunction is affecting me. I was hoping to see an ENT at MDACC during the visit, but the schedule did not work out

Oncology - MRI Scan

Once again, insurance issues prevented me from getting what the doctors had wanted, which was to get both an MRI and a PET scan, as they provide different type of information about the treatment progress. This time, insurance only approved the MRI. I had a PET scan in Dec, so this would be a change in imaging type. My original schedule had an MRI at 6:15am followed by the PET at 9am on Wednesday.

My early start on Wednesday morning (6am blood draw prior to the scan) made lying still for the 45 minute MRI scan time even easier. I was already half asleep, so it was not a challenge to lie still and daydream / half fall asleep for the scan. Fortunately, the technician said I did great, so I guess have any sudden movements transitioning from half asleep to alertness.

I finished my MRI around 8:30am, so I had a little break in the schedule. The PET was originally scheduled at 9am, but since that was canceled and replaced with a swallow study at 10:30am, I had time to eat a nice breakfast - the leftovers of the previous night’s dinner. Not quite as exciting as my original plan to leave the medical campus for BBQ before returning for my 12:30pm appt, but still good.

Medical Oncology - Dr. Gillison

The visit with Dr. Gillison (and her resident, Dr. Wotman) was pretty straightforward and positive. My appointment was scheduled for 12:30pm, so this time I saw her before seeing Dr. Phan. The MRI had not been read by the radiologist when I saw her, but Dr. Gillison reviewed the images and gave me the positive news: the scan looked “great” - no signs of the tumor. She also reaffirmed that the cause of the ear issues was the result of the damage to the eustachian tube from radiation (rather than tumor progression).

In terms of the maintenance immunotherapy, she said the plan is to continue with pembro (Keytruda) until August 2025, which is two years after the SBRT treatment, so long as I tolerate it. In addition, she mentioned the hypothesis that Dr. Chua and Dr. Phan had mentioned previously - with SBRT killing the cancerous cells, the IO is re-sensitized and may even more better after radiation. I don’t remember the context exactly, but Dr. Gillison used the word “vaccine” as how the IO and cancer cells may interact. Since I had microscopic cancer cells remaining from my 2018 treatment, I want to do everything we can to maximize the chance that we kill them all this time.

For that reason, I want to stay on immunotherapy for as long as possible. Dr. Gillison doesn’t believe that insurance will raise a concern about continuing through August 2025. One of the causes of my increased anxiety was whether insurance would get in the way of treatment. Most studies for maintenance immunotherapy are for 2 years only, so my concern is that insurance won’t play for extended treatment programs. In my case, I started immunotherapy in April 2022 as part of the systemic treatment (along with chemotherapy) to address the first recurrence, with that course (6 three week cycles) finishing in August 2022. I have been on maintenance IO since that time, but with the tumor progression in May 2023 and the SBRT treatment in August 2023, I wasn’t sure if that would “reset the clock” on maintenance IO. I’m glad that Dr. Gillison agrees that two years of maintenance IO would start from the end of the SBRT treatment and extend through August 2025. Assuming all goes well - tolerable side effects and no tumor progression - I would be on IO for nearly 3.5 years(!).

Overall, the visit was encouraging and focused. Even though I had written my usual list of questions and topics to discuss, I didn’t ask all of them for some reason. In prior visits, I was the last patient of the day, so it felt like we had more time for broader discussions. Perhaps it was in the middle of the day and I still had an appointment with Dr. Phan and/or because the news was so good, my internal elation didn’t want to be tempered by other issues, so I didn’t ask all my questions. Also, I think I have a pretty good sense of her approach, so I didn’t need to (re-)confirm it. Those include questions like whether to add/change the drug regimen (no change needed) or how to handle skin rashes (just use the same creams I’ve been applying). The one question that I may still want follow up with her is this:

• What scans would she prefer (PET vs. MRI) and what would expect to see or want to monitor? For example, would a PET still some activity or should it be “clean” at this point?

Radiation Oncology - Dr. Phan

I finished my appointment with Dr. Gillison at 2pm and went to see Dr. Phan. I was feeling optimistic about the news and was hoping to get more detail from him. I met with his nurse and then his resident (Dr. Cha, who is also from Chicago, so that was nice) and then waited to see Dr. Phan. Between the time of my visit with Dr. Gillison and Dr. Phan, the radiologist had read the scan and written his report. Dr. Cha gave me a copy and said things looked very good. While I waited to see Dr. Phan, I read the report tried to interpret the medical language as best I could. The first line under the “Findings” section was “The enhancement in the right nasopharynx seen on MRI simulation study 07/26/2023 has resolved.” In this context “resolved” I took to mean as “undetected,” as in the radiologist was not able to detect any gross tumor from the MRI scan. Other findings noted issues that the radiologist attributed to “radiation related changes” That got my hopes up, but I didn’t want to get too excited in case there were any caveats.

This made me quite optimistic. Unlike my Dec visit, when I was feeling a bit nauseous while waiting in the exam room, I less nervous and more looking forward to seeing Dr. Phan. He was once again quite positive, and the news was perhaps even better than I expected. He confirmed that he couldn’t see the tumor on the scan. In addition, he said that the soft tissue in my treatment area were recovering very well. He showed me a few images from the MRI, in comparison to the last MRI from July 2023. I was able to see for myself what he had described - the right and left sides of nasopharynx looked pretty similar and there wasn’t a tumor there. Seeing the images side by side was quite striking.

Dr. Phan then showed me an image of the fluid in my middle ear and mastoid on my right side. This confirmed the issues I’ve had with the my hearing are related to the fluid. I didn’t know that the MRI would pick that up, so the visual confirmation was again reassuring for me. Dr. Phan did recommend getting a standard ear tube procedure (tympanoplasty) to drain the fluid and equalize the pressure. He said that the balloon procedure (to dilate the eustachian tube in order to promote drainage) may be risky since that area has been radiated twice and it may not recover as well after that procedure. The key downside with the ear tubes is that I have to be mindful of getting my ears wet, i.e. need to be careful swimming or any water-based activities.

With respect to the other side effects, Dr. Phan said that I should be past the worst of them. That is, both the risk of developing and the severity of the side effects is lower not that I’m 7 months post-treatment. I’m hoping that is the case - I’ve been pretty fortunate so far that my side effects have been manageable. I’ve been able to enjoy food & wine as normal (or at least my “new normal”) for a while now. Dr. Phan also agreed with Dr. Gillison to remain on immunotherapy through August 2025.

The plan is to return in 3 months for more imaging. Dr. Phan recommends continuing with the MRI for the next scan (instead of returning to a PET). Hopefully the news on future visits will be as good as the news from this visit.

Audiology

Hearing loss is one of my main long-term radiation and chemo side effects for me. As mentioned previously, this looks to be a pretty straightforward and correct-able issue.

I’ve seen the PA at UCM’s ENT department twice since my Dec scans. She’s noted the amber fluid in my right ear (meaning the fluid has been there a while) and that my eardrum was sucked in (negative pressure). The fluid is causing conductive hearing loss, rather than sensorineural loss. In other words, the hearing loss should be temporary and will go away once the fluid is drained. I don’t expect to have any permanent damage to the nerves or bones used for hearing. She recommended getting a hearing test, and I had one scheduled at MDACC as part of this follow up.

The hearing test at MDACC confirmed the diminished function - I have lost some hearing at higher frequencies on my right side (likely due to the cisplatin chemo drug from 2018) and ultrahigh frequencies on both sides (expected with age). Note: the MDACC exam tested higher frequencies than the ones I’d gotten at NM and UCM. In my own assessment, the hearing in my right side worse than my left by 7 volume levels (on the iPhone using the AirPods Pro). While I can still hear out of my right ear, I don’t always make out the words clearly on that side. Over the past few weeks, I’ve tend to position myself to the right of someone I’m talking to, to increase the chance that I’ll understand them better. If I’m wearing a single ear bud, it’s the right one, so that I can hear ambient noise better with my left ear.

So far, Dr. Gillison, Dr. Phan, the PA and audiologist all believe this should be a straightforward case. I’m scheduled to see an ENT doctor at UCM, and he should be able to provide more specifics around the recommended course of treatment and the rationale. The ear tube procedure preferred by Dr. Phan is a common one - kids get it all the time. The recovery period is very short and it’s done under local anesthesia. I want to discuss the options with the ENT - what types of tubes to put in, whether I’ll need to do the procedure again as my eustachian tube is damaged and may not drain well, etc. - and then get the procedure done. I should be able to do the consult and procedure on the same visit.

Speech Pathology

With an extra day for appointments (by arriving Tuesday morning), I was able to schedule more speech pathology appointments. As mentioned previously, these visits will help to maintain, and in some cases improve, my functionality and thus my quality of life.

My first visit with was Dr. Barbon, with whom I had met very briefly on a previous visit. The focus of this appointment was to review my exercises from my last SLP visit and to introduce tongue endurance exercises. My program for the past few months included swallow exercises, MDTP, EMST and IOPI. EMST (for strengthening my chest muscles) and IOPI (for tongue pressure) have been going well. My IOPI numbers match what I was able to do at Rush (~51 front and back), which is an improvement from my August results. They are now within the normal range (lower end of the 1 standard deviation from the mean), particularly for radiated patients.

Upon exam, Dr. Barbon showed me the involuntary twitching (fasciculation) of the right side of my tongue. She said this was due to damage to my right side hypoglossal nerve from radiation and re-irradiation. This nerve controls the tongue, so that would affect my speech as well as chewing and swallowing. The good news is that this may be reversible (unlike some of my other functions where I’m just trying to maintain and not lose any more function).

I will now be adding the TonguePress exercises to my SLP regimen. Whereas I use the IOPI bulb to increase my tongue strength, the TonguePress is used to increase my tongue endurance, so it’s complementary. The TonguePress device uses water and air for resistance. The exercise is to push a bulb with my tongue and hold the pressure for as long as possible, with the target pressure set at 50% of my max. Ideally, this would be for 20 reps per set, 2-4 sets per day, 2-3x per week, with each rep lasting up to 20 sec. This could take a lot of time! The target for me is more modest to start - 10 reps, 1x/day, 2-3/week (alternate days between the TonguePress and the IOPI).

The next visit was with Brad Smith, another SLP, for go over stretches and exercises for my head & neck and chest (not specifically for swallowing and tongue). This was also very useful. I was pleased to hear that he thought overall my condition was in the upper tier of post-radiation patients - my neck muscles were softer than he expected and there is no visible swelling. We reviewed a number of exercises to maintain that pliability and range of motion. Some of the neck stretches are exercises I’ve done before (either in yoga or as part of a recovery routine) and some were newer to me. I’ll have to incorporate them into my daily routine. The anterior neck stretch (“bulldog stretch”) - looking up with my chin/jaw while pulling down my just below my neck - had immediate results. My jaw opening went to 42mm to 44mm just from doing that exercise a few times.

During our visit, he recommended seeing someone for more manual therapy on my neck. In his visit notes, he graded me as having “Type A, Grade 4 fibrosis”. This translates to no visible swelling (Type A, range from A-D) and “mild to moderate fibrosis with or without edema” (Grade 4, range from 1-5). I don’t want my neck and jaw muscles & tissue to get any tighter, so I’ll be sure to start the treatment in Chicago. I had lymphedema massage after the 2018 radiation. The therapy this time is more focused on the fibrotic tissue than dealing with swelling. Hopefully that will help with the neck range of motion and reduce the jaw tensing/cramping that I occasionally get when I eat or speak a lot.

Finally, Brad also noted mild dysphonia (abnormal voice). He could hear some air escaping through my nose during certain sounds, like “sh”. So my voice is slightly hypernasal. I don’t think I notice it much in normal conversion, but I don’t want this to get any worse either.

I’ll add these exercises to my daily / weekly routine. This now includes the following related to my neck & jaw:

• Tongue pressure - IOPI: 30 presses each for front & back, 3x/day, 2-3x/week

• Tongue endurance - TonguePress: 10 holds (5-20sec each) each for front and back, 1-3x/day, 2-3x/week

• EMST - chest strength training: 25 exhales, 1x/day, 5x/week

• Swallow exercises: 3-4 exercises, 10 reps each, 3x/day, 5-7x/week

• Neck stretching exercises: 3-5 exercises, 10 holds (5-10sec each), 2-3x/day

• MDTP: 2-3x/day, everyday

• Fluoride trays for my teeth: 10min per day, everyday

The final piece of my SLP appointments was a follow up modified barium swallow study (MBSS) on Wednesday morning, following the MRI. This was the same test as I had done previously - drinking fluids of various viscosity and then eating pudding and then a cracker. The results of this study showed some improvement. My score was Overall 2, Safety 1, Efficiency 3 vs. O2, S2, E3 from the Dec test. In terms of safety, that did improve, meaning that the risk of aspirating (food or drink going down the wrong pipe) is lower now. However the Efficiency score is still a 3 (“severe” - a grade of 4 is “profound / life threatening”). While I was able to eat the pudding with little residue, the radiologist said that with the cracker, there was 90% residue. That is, most of the cracker was not going down my throat on the first swallow, even with the MDTP techniques. The report also notes that “Pharyngeal contraction weakened bilaterally.” I think MDTP is meant to address this, so I’ll definitely have to continue with this to ensure this doesn’t get any worse.

To be honest, I was hoping, though not expecting, for a bigger improvement in my swallow test given my efforts on this front (see below). I understand why I’m still scored at a 3 for Efficiency and was a little surprised by how much of the cracker wasn’t swallowed. At least I am more confident with eating - in particular not requiring the liquid assist to eat certain foods. So I feel an improvement, even if the score doesn’t reflect it.

MDTP Program at Rush

With respect to MDTP, after my Houston visit in December, I did an intensive MDTP program with Josh Teitcher at Rush (in Chicago) throughout January. He was recommended by one of the SLPs at MDACC. The program is one to help improve my eating and swallowing. When I started with Josh, he told me the primary goal of the program is for me to feel more confident in eating and swallowing foods - there wasn’t a more specific or objective goal. The MDTP program classifies food into a hierarchy from level from Level 1 to Level 11. I got a kick out of the foods highlighted as examples in the list - some were oddly specific and perhaps out-dated.

The program itself is slightly odd in that Josh’s role was to watch me eat and count how many swallows it took to clear the food. Out of respect to his office and future patients, I avoided bringing in foods that may leave a lingering smell in his office. That being said, I took some of the items on list literally, so it was an excuse to eat Chef Boyardee Spaghetti O’s, bacon, hamburger & fries in front of someone (I decided not to eat Hormel beef stew, canned cheese, Subway sandwich or Wendy’s chicken salad).

Overall, I managed to progress from my Level 8 starting point to Level 11. With the hard swallow technique, I was able to reduce the number of swallows it took me to eat certain foods. I was able to eat most Level 10 foods in 2-3 swallows per bite. Furthermore, it did build up my confidence with eating more challenging foods. For example, before the program, when there was pizza at a party, I had to have a drink on hand to make sure I could eat it all. After doing the MDTP, I no longer feel the need to have that drink crutch. I have been able to eat slices of pizza and an entire burger without drinking any water. In fact, when I had a Chick-Fil-A spicy chicken sandwich and fries from the MDACC food court on Tuesday afternoon, I finished both without water. So even though my swallow study Efficiency score did not improve, I feel there have been functional improvements and I can eat a normal diet without much restriction.

My work with Josh also helped improve my tongue strength. In August, upon finishing SBRT, my tongue strength was measured at 46 front and 36 back using IOPI. Josh started me on exercises that increased my strength. The mean is 63kPa with a standard deviation of 12kPa, so my starting point was below the lower bound of “normal”. With the exercises, I got up to 51-52kPa, with the front and back being roughly equal. I’m not entirely sure why the back of my tongue was so weak back in August.

Non-Medical Notes

In terms of non-medical topics, there were a few events worth noting during my brief visit.

On Wednesday, I had a slightly break in my schedule between the swallow study and my appointment with Dr. Gillison. I went to one of the common spaces at MDACC and stumbled upon a “Music-in-Medicine” concert, performed by a violin, cello and piano trio. I got there when they were rehearsing before the 12pm concert (my appointment was at 12:30pm, so I couldn't stay for the whole thing). It was an unexpected and pleasant surprise. The musicians were top notch - award-winning professional soloists. The director and piano player is Dr. Mei Rui, a professor in MD Anderson’s Neurosurgery Department, who received a doctorate in music and is researching the benefits of music’s impact on healing.

Program

World-class musicians performing a free concert at MD Anderson

Second, I’ve had good luck with car rentals for my 1-2 day trips. On a previous occasion my rental car was a red Ford Mustang. This time, I got a Mercedes EQB 300 SUV (all electric). Both of these were at the MD Anderson rate, which is $35/day plus taxes ($50/day all-in). With the electric vehicles, if I go from Hobby Airport to MDACC and back, I use less than 20% charge. It’s not enough to require me to plug in to get it charged (charging stations in Texas don’t seem as ubiquitous as around Chicago). I’ll do the same booking for my next visit to Houston and hope to get lucky again.

Finally, here are the dining highlights of the trip. As this was a short trip with lots of appointments, I didn’t have as much of a chance to explore.

• Tuesday lunch: Chick-Fil-A at MD Anderson

• Tuesday dinner: Rosie Cannonball

• Wednesday breakfast: leftovers from Rosie Cannonball

• Wednesday dinner: Comalito

• To Take Back to Chicago: Comalito and Pappas Bros Steakhouse

The highlight meal was dinner at Rosie Cannoball. I met with our friend Soo and her niece for dinner.  It’s a place that’s been high on the list for a while, so glad I finally went.  The food is Mediterranean with highlights including pizza, pasta, and vegetables.  It was a lighter meal than some other options, which was good for me since it was a long travel day and the next morning also had an early start.

All of the courses were quite good, with my favorites being the blistered bean salad and the cavatelli alla bolognese.  Both of these had just the right amount of spice.

smoked trout roe, sherry vinaigrette, garlic chips

pea shoots, shallots, fresno peppers, olives, candied almonds

raclette, picked mustard aioli

lambrusco bolognese, parmigiano reggiano

burnt honey, dulce de leche whipped cream, creme fraiche gelato

gianduja crémeux, raspberry gelee, candied hazelnuts

On Wednesday, I was hoping to be able to eat at two places before my 8:15pm flight, especially since I thought I might finish early.  In the end, I didn’t leave MDACC until 5pm, so I only had time to eat at one place. For this trip, I decided to go to Comalito, a Mexico City-style taqueria headed by a pastry chef who was named the best in Latin America. It’s located in the Houston Farmer’s Market, but I didn’t have time to walk through the market.   

We’ve been on a bit of a Mexican food kick since our trip to the Riviera Maya in February (more on that in a separate post), so I was excited to try.  In addition, the local food critic called the churro the best she’s ever eaten, so I was quite excited.  The food - both the tacos and the churro - met expectations and I made sure to bring enough back to share with Aiday and Charles.

The grilled onion appetizer was particularly tasty (especially for $3.50).  I also loved the costra de arrachera - a cheese crusted marinated skirt steak taco.  The cheese was melted and then combined with the meat.  It’s not something I think I’ve had before.  

My order for one, including a celebratory margarita

marinated, grilled and lightly caramelized onions with a touch of lime

marinated skirt steak cheese crust taco

This was as good as expected - exceptionally light and tasty

Au gratin potatoes - I’ve been craving this for a few months. I picked up two orders to bring back to Chicago

To finish off the blog post, I must mention two recent meals in Chicago. The first was a pre-Houston meal at ELideas. Aiday and I shared a meal with our friends Todd and Becca. We became friends as our kids have been best friends since they were 4 months old. It was great to have playdates where the kids would play by themselves and the parents could relax a little. For this dinner, we chose to leave the kids behind and enjoy a Michelin-starred BYOB tasting menu. Todd has a fantastic collection and what better time to share some of our older vintages than now. We opened 5 bottles that night, with the youngest one being 11 years old (the 2013 champagne). The corks were in great condition - the wines were in great shape and we got to enjoy them all. We went with the classics - grower champagne, Grand Cru burgundy, second growth Bordeaux, auslese riesling. Todd’s choice of the Robert Weil Riesling Auslese was the exact same wine I brought the the restaurant the first time I went in 2011. Even better, no one had a headache or hangover the next day.

After the good news from Houston, Aiday, Charles and I went to for a celebratory dinner at Galit. It’s a restaurant that’s walking distance from us and one we’ve really enjoyed but haven’t returned to for a little while. It’s a Middle Eastern restaurant that has some of the best pita I’ve had (the chef came from Shaya in New Orleans, which is also great). The menu used to be a la carte, but it’s now a tasting menu with choices. This return meal reminded us of how comforting the food is and how much we enjoy the flavors. The wine list is also focused on the Mediterranean, and we enjoyed a bottle of xynisteri wine from Cyprus. Charles has been to a few fine dining establishments but he mostly prefers the bread and desserts, even when we offer all the good stuff.

Bubbe’s brisket hummus; 4 types of salami. The ezme (Turkish peppers and tomato, pecans, hot garlic) is my favorite

smoky cinnamon, tomatoes, braised carrots

Falafel - funky mango, labneh, Persian pickled turnips. It had wonderful bright green color inside

Iraqi Kubbeh Halab - crispy saffron crust, lamb, golden raisins & almonds

butter-poached & grilled, kabocha squash, chicories, za’atar flowers. The touch of smoke from the grilling was very nice

harissa, last spring’s lovage, prunes, celery root. The spice level on this was just right

coffee, crunchy hazelnuts, cardamon. Charles ate the majority of this dessert by himself

He likes to take us out for meals

Thank you again for reading through the post and for your support. Hopefully the news from further follow up visits will be just as encouraging. I’ll keep you updated.

In addition the long-overdue Istanbul and Kyrgyzstan posts, I may also add one for the short trip to Mayakoba and other trips. Hopefully those will be out before my next return trip in June.

Going in to the appointments, I was a bit anxious. I have been experiencing ear fullness and more noticeable tinnitus, both on my right ear only, so I was a bit fearful and nervous that the tumor was progressing or starting to re-grow. I’d also been experiencing increased dry mouth and more swallowing issues, so I wanted to address those issues as well.

In terms of this blog post, it’ll be a similar format to previous ones - a summary with the key highlights, more detailed medical notes, and finally some pictures and descriptions of what I ate in Houston.

Summary

Overall, the updates from the consultations were positive and reassuring. That is, there are signs that the SBRT treatments are working as intended and that the cancer may be “on its way out” (Dr. Phan’s words). Dr. Phan said he was quite pleased with the scans. Without a formal radiologist reading, Dr. Phan estimated the tumor volume shrank ~70%, and Dr. Gillison estimated activity was down ~95%. Dr. Phan termed this a very good early response. The activity that remains (i.e. what still lights up on the PET scan) looks to be residual inflammation. The right side ear issues seemed to be all consistent with inflammation, infection and/or eustachian tube dysfunction, as opposed to the cancer progressing. I would still like these issues to be resolved before I can feel more confident, though.

There were a few issues of potential concern. First, Dr. Gillison noted a lymph node that had grown from 7-8mm to around 10-11mm. Since she knows me and mentioned how “proactive” I am in my own care, she recommended getting an ultrasound / fine needle aspiration (FNA) to make sure the lymph node is “reactive” (benign) and not cancerous. Thus, I had to stay an extra day in Houston to get this test done.

The other area of concern is my dysphagia (swallowing difficulties). I suspected that this was getting worse in the past few months, and the swallow study confirmed it. I was scored as having “severe” dysphagia with respect to swallowing efficiency - 50-90% of food gets stuck in my throat on my first swallow. I now have a few more exercises to add to my daily routine to make sure my speech and swallowing can be maintained / possibly improved and don’t deteriorate any further.

All in all, it was quite a reassuring visit. I’ll be back in 3 months (March 2024) for more follow up. The care team MDACC continues to impress me, especially now that I’ve had more regular interaction. In the meantime, I’ll continue to get treated at UCM and hopefully things will remain on course.

Medical Appointments in Detail (Chronological) - Day 1

Schedule

My Wednesday at MDACC started with 3 tests, followed by 4 consultations. This was the schedule, which was described as “exceedingly ambitious”(Dr. Hutcheson):

• 8:15am: blood draw

• 8:30am: PET/CT scan

• 11:30am: Modified Barium Swallow study with Dr. Hutcheson

• 12:30pm: Oral oncology with Dr. Aponte-Wesson

• 1:00pm: Speech Pathology

• 2:00pm: Radiation oncology with Dr. Phan

• 2:30pm: Medical oncology with Dr. Gillison

The original schedule included 4 tests, but once again, insurance approval issues prevented me from getting all the scans the doctors wanted. In this case, insurance would not approve the MRI (even after doctor-to-doctor appeals), so I only got a PET/CT scan. The MRI was originally scheduled for 6:15am, so at least I didn’t have an extra early start to the day - just the 8:15am blood draw.

After that, I had the PET/CT scan. Similar to before, I got an injected with a radioactive tracer (FDG) and then had to sit in the prep room quietly for about an hour - no phone, books, TV, etc. Just a meditation or nap time. The scans themselves are pretty easy for me at this point - 25 minutes lying down on the table while they do both the full body and the head & neck scans. They do not provide any results at the time, and with a slightly early finish (around 10:30am), I had time to snack before my next appointment. That was the only break in the day.

Modified Barium Swallow Study & Speech Pathology

The next test was a modified barium swallow (MBS, an unfortunate acronym) study. This is to assess how my swallowing function has been affected my radiation. This is the third time I’ve had this test done, though each time has been at a different location (first at NM, then at UCM). During this test, I was given a few different liquids and foods of various consistency to swallow. It is slightly strange that I could see the X-ray images of my swallow while I'm doing it.

The health care provider administering the test was Dr. Kate Hutcheson, who is the head of the speech pathology department at MDACC. She trained the speech language pathologist (SLPs) that I worked with at NM. She had a very kind and caring manner. As we were reviewing my history and current status, she asked whether I was a doctor, which is quite flattering.

As I was doing the test, I could see that food was getting caught in my throat and that I needed a few swallows to get it all down. This started even at the thinnest of fluids and got worse as I ate thicker foods (thin liquid, thick liquid, pudding, crackers dipped in paste). Dr. Hutcheson confirmed my suspicions that my dysphagia was progressing (swallowing function getting worse).

Two thin liquids, two thick liquids, pudding, crackers with paste - all with barium (easier to see contrast in X-ray)

I could see the video of what got stuck in my throat in real time

The swallow study was only 30 minutes, as I had to go to an oral oncology. The appointment with oral oncology was to get new fluoride trays, as I sort of destroyed my first set. In September, I wanted to clean them and I used denture cleaners and nearly boiling water. (Good thing I had my 2018 trays from my dentist, as I’ve been using those since then.) Dr. Aponte-Wesson said that I wouldn’t have known not to use boiling water. That would likely be true for most people, but my college major was materials science with a focus on polymers, so if there’s anyone who would have known that heat can deform the trays, it would have been me. In any case, they were able to make new trays with the existing molds that I have.

After that relatively quick visit, I had a follow up appointment with Talia Schwartz, a speech pathologist. The original appointment was scheduled with Dr. Barbon, but I think the appointment was switched because of the results of the MBS. There are a lot of areas for speech pathology to address, so my swallowing deficiency took priority over issues like tongue strength/endurance and manual therapy. We’ll have to address those next time.

Talia reviewed the swallow study in more detail. There are two key areas that the study evaluated: a) efficiency and b) safety. Efficiency refers to how well I am able to move food from my mouth to my stomach, with the tongue and constrictor muscles in my throat pushing the food down. Safety refers to the degree of aspiration, i.e. food or liquid entering my airway or lungs (i.e. going down the wrong pipe). In summary, they scored me as having “moderate-severe pharyngeal dysphagia, DIGEST (S2, E3)”. In other words, on a 4-point scale, my safety was 2 (moderate) and the my efficiency was 3 (severe). The Dynamic Imaging Grade of Swallowing Toxicity (DIGEST) scoring system was developed by Dr. Hutcheson and her lab so the results may not be directly comparable to the prior swallow studies I’ve done, but the dysphagia seems to be progressing.

Starting with safety, Talia said the score was borderline between 1 and 2, so a “low 2” if you will. That means that a small food and drink sometimes goes down the wrong pipe. This is consistent with my experience at home. Overall, this doesn’t seem to be of too much concern at this time.

Swallowing efficiency, on the other hand, is more of an issue and could benefit from intervention and exercises. Swallowing efficiency can get worse over time, so targeting it now is important. The scoring grades as as follows: 0 (no issues); 1 (<10% residue); 2 (10-49% residue); 3 (50-90% residue); 4 (>90% residue). In other words, when I swallow (at least the first time), more than half the food or liquid is stuck in my throat, and I have to swallow again to clear it. Again, this is consistent with what I’ve experienced at home - food that I wouldn’t think would get stuck - apples, hummus, other soft foods, etc. - were things I had to cough back up. This also means that I take longer to eat and that I’ve been drinking more water (liquid assist) in order to eat. Fortunately, at least from my perspective, this hasn’t yet caused me to lose satisfaction from eating or restricted me too much in what I eat (I do tend to stay away from certain foods, as I know they’ll be challenging). Since I enjoy food so much, I don’t want this to get any worse, so I’ll be doing my best to be compliant with the exercises and techniques they recommend.

The McNeill Dysphagia Therapy Program (MDTP) is a program to improve swallowing. For me, it’ll be a new way of eating that should eventually become second nature. There is evidence that this produces beneficial outcomes, so I’ll want to research that some more. I will likely pursue the intensive program, which is 1 hour a day, everyday for 3 weeks. Talia said the program is analogous to strength training in that your muscles get stronger as you increase the resistance. In this case, the resistance would be eating thicker or harder-to-eat foods as I improve my capabilities.

This would change how I swallow and eat. Currently, I drink water when I eat more troublesome food, as it’s easier to swallow a slurry than the solid. Also, if food gets caught, I cough it back up, if needed. With MDTP, I should NOT be doing either of those. Instead, the technique is to swallow hard, clear my throat (but not cough), inhale, swallow again, exhale and repeat until all the food is clear. If I need an assist, it should be with an applesauce or pudding (rather than liquid). I think this will take some time getting used it. For example, now, it could take me 4+ swallows to finish some foods. Also, unlike other exercises that are performed occasionally, this is something I should be doing every time I eat. The visit with Talia was relatively short (about 40 minutes), as I had to go to my next appointment. But I think I had enough time to understand the basics of the technique and approach.

In general, the appointments with speech pathology may have the most impact on my quality of life, as the exercises and techniques they show me will help to maintain and improve my functional capabilities. It’s these appointments that I’ll want to make more time for in the future. Especially as I hope I’m just on a maintenance program from a medical perspective. If things go well, I won’t have to make decisions between different courses of treatments.

Radiation Oncology - Dr. Phan

The next appointment was with Dr. Phan, my radiation oncologist. This consultation was the one that could provide the most answers to my questions regarding how the treatment was going and what my ear fullness and tinnitus could be mean. It was long-ish walk (from Elevator A to Elevator G), and they called me back straight away to start taking my vitals and review my current status. I hadn’t been feeling well throughout the day with a bit of a headache and an unsettled stomach. I think the fasting required for the PET scan (no food, only plain water) and/or potentially something I ate that did not sit well could help explain my unease. In addition, I was probably psychosomatic from the stress and uncertainty of the first follow up scan results and what it could mean for my future.

The result? When the nurse took my blood pressure, the first reading was 172/109! The second reading was slightly lower, but there was certainly elevated stress. You could say I was just a little bit nervous going into this appointment.

Dr. Phan’s schedule was backed up it seemed, and I ended up taking a short nap while waiting for him. It was worth the wait. Overall, he said he was very pleased with what he saw in the PET scan and that the tumor looks to be “on its way out" and trending in the right direction. The tumor size was down around 70%, which is a good early response. He said sometimes the reduction in size doesn’t happen until 6 months post-SBRT. There is still some metabolic activity on the PET scan, but he said that could be consistent with residual inflammation.

If I hadn’t mentioned the ear fullness and the tinnitus on the right side, there wouldn’t be any concerns. Dr. Phan said that there are three areas to monitor re: tumor progression: i) ear fullness and tinnitus; b) throat pain; and c) swallowing. If those get worse, that could be a bad sign.

Dr. Phan thinks the symptoms I’m describing are consistent with inflammation or infection. He examined my ear and said there is fluid, so he prescribed antibiotics.

I also asked him about potential taste changes. To me, food has seemed a little blander since around mid-November, and I was wondering what might be causing this. Dr. Phan thinks this could also be related to the inflammation. My taste buds shouldn’t have been affected by radiation, as that would cause a more radical change (i.e. wipe out taste buds vs a smaller change). In general, it seems like inflammation could be causing a lot of the symptoms that have been concerning me.

I also asked about dry mouth. This also shouldn’t have been impacted much by the radiation. In addition to the lozenges, xylimelts and mouth wash, several providers at MDACC mentioned acupuncture as something to consider. I’ll have to schedule some appointments when I get back to Chicago. The dry mouth was probably at its worst in Kyrgyzstan, when my mouth was so dry that residue was stuck on my teeth, which didn’t make the pictures great.

With respect to other side effects, I still may get ulceration, as that tends to start 6-9 months post-radiation. Hopefully I won't, but I’ll have to keep that in mind as something that is not unexpected. Ulceration would present as continuous infections.

Dr. Phan was also surprised that insurance denied both the MRI and PET scans, as those scans provide him with different information. MRI would be better for distinguishing between scar tissue/inflammation vs. tumor. He thinks that with the residual activity, insurance should approve both scans for my next follow up. However, if they only approve one, Dr. Phan would do the PET scan, as that would be the third in a series. That would be better to provide the trend than switching to an MRI.

I felt quite a bit better after meeting with Dr. Phan. From a treatment perspective, the SBRT seems to have been working and trending in the right direction, perhaps even earlier than expected. My new symptoms are concerning, but they seemed to be explained by inflammation.

When I finished, it was after 4pm, so I was quite a bit behind schedule. Before meeting with Dr. Gillison, I stopped by oral oncology to pickup my new fluoride trays and saw Dr. Aponte-Wesson. As I mentioned previously, she is especially positive (all the doctors at MDACC are quite supportive). She said that I stand out because of my diligence in keeping up with the recommendations, so that was nice to hear.

Medical Oncology - Dr. Gillison

The appointment was Dr. Gillison, and her resident Dr. Wotman, was the last in a pretty long day. It seems like I’ve ended up being her last patient on my last two visits. Dr. Wotman took my history and current condition, and he also thought that inflammation is likely causing the symptoms. He differed slightly from Dr. Phan in that he saw earwax but not much fluid in my ear. He thought it was unlikely that I’d have an infection, as that would be more painful and wouldn’t last for a month, as my fullness and tinnitus had started in early to mid November. He did agree that my local ENT would be best to assess this further.

Similar to Dr. Phan, Dr. Gillison was quite pleased by the PET scan. I believe she mentioned a 95% reduction in the activity of the tumor (she used a medical term, but I think that’s what she meant). So that’s even more than the 70% volume reduction that Dr. Phan saw!

She agrees that it’s likely I have eustachian tube dysfunction (ETD) right now (not sure if she makes a distinction between ETD and inflammation). She reminded me that Dr. Phan had prescribed steroids right after SBRT to reduce the swelling. I took my last dose in late September and then had the long flights to and from Kyrgyzstan in October. So with the fullness and tinnitus starting after that, along with the cough I had developed in November, the timeline fits well. Dr. Gillison also mentioned that with ETD, my fluid drainage may be impaired, so I may have to consider tympanostomy tubes. This is something I’ll want to discuss with my ENT, as he’s mentioned it before as well. The ear issues and the swallowing issues are the two biggest impacts on the my quality of life right now. It’s not ideal, but at least I don’t have to worry too much (at least for now) about pain, loss of energy or loss of any other major functions.

However, there was one issue that Dr. Gillison brought up that ended up keeping my in Houston for another day. Even though the PET scan had not been formally read by a radiologist (Dr. Phan and Dr. Gillison were using their expertise to evaluate the images themselves and not reading off the radiologist report), she said she noticed a lymph node “left level 1A node that increased in size from 7 to 11 mm and is slightly PET avid. CT neck images are consistent with a reactive node.” To me, this description sounds like the lymph node that was suspicious in March 2022. This node was biopsied and that turned out negative (much to our relief). But since it had grown and was slightly active, we wanted to examine it further. I asked Dr. Gillison about her confidence interval that it was benign, and she put it at 70%.

Dr. Gillison said that as she’s gotten to know me and how proactive I am in my care, she thought it’d be best to do an ultrasound and possible biopsy to have the peace of mind. To me, her confidence indicated the node was likely benign but she couldn’t be sure without further testing. So remove the worry for the next few months, and for the MDACC team to do it, I needed to stay an extra day. It was already 5:20pm, so quite a late change of plans. The lymph node discovery did put a little damper on the day.

The rapport with Dr. Gillison is much more comfortable now. Being the last patient may also help, as there isn’t a time constraint. With an unexpected night in Houston, we talked more about restaurants and ice cream places. She remarked that it seemed like I had been working out and added muscle since my last visit, so that was another nice comment to hear. (For the record, I wore a standard fitted long-sleeve lululemon polo that day. I’m definitely not a tank top or tight fit wearer.)

Fortunately, I called Southwest and was able to change my fight to the next day without any additional cost. So the only monetary cost was the additional night in the hotel and extra rental car day. The other downside was not seeing Charles and Aiday for another day.

Medical Appointments - Day 2

I started Thursday morning without any appointments scheduled. I was waiting for the ultrasound / FNA to be scheduled. I had messaged speech pathology to let them know that I would be available, since we were time constrained in the Wednesday appointments. By 8:15am, the two appointments were scheduled - 10:45am with speech pathology and 1:15pm for the ultrasound.

Speech Pathology

The speech pathology appointment was with Sharon Chang, whom I had seen in August. This visit was focused on EMST (Expiratory Muscle Strength Training). Dr. Hutcheson had mentioned this during the MBS study, so I’m glad I was able to get training on this before heading back to Chicago. EMST is another set of exercises to help improve the muscles used in swallowing. By strengthening these muscles, there is reduced risk of aspiration (food and liquid going down the airway pipe).

In essence, the exercise is blowing against resistance using a device. The device has two parts: a mouthpiece and a piece that provides variable resistance. To do the exercise, I have to pinch my nose with the clip, then blow hard into the device without puffing my cheeks. I should hear a whistle. (This is different from an asthma peak flow test, which provides a numerical reading of the force.) This needs to be repeated in 5 sets of 5 breaths (25 total) once a day, 5x/week for 8 weeks, increasing resistance each week. After that, I would hopefully move to a maintenance program.

To me, EMST is likely the easiest speech pathology exercise to maintain. The 25 hard breaths shouldn't take too long overall, and I only have to do it once a day. I did feel the muscles in my chest activating when I did it, but I don’t think I should tire out too quickly. The swallow exercises (4 exercises of 10 reps each, 3x / day) is more challenging to do, especially as my worsening dry mouth means I don’t have saliva to swallow and have to sip water to do the exercises. The MDTP may also be challenging on my own, but I may look to do the 3-week intensive program (1 hour a day) to help with compliance.

Neuro-interventional ultrasound

Following my speech pathology appointment, I went straight to neuro-interventional ultrasound. I was hoping that they could get me in early and that they wouldn’t need to biopsy, so that I could catch the earlier flight back to Chicago. That didn’t happen. My appointment started on time and getting the ultrasound image was pretty straightforward. When the technician went to review the images with the radiologist, I took another nap, as I (particularly my stomach) was still feeling a bit unsettled.

Dr. Shah, the radiologist, came back and said it looked reactive, but still wanted to do a biopsy to be sure. Interestingly, when I asked her about whether it was the same node that was biopsied in 2022, she said she couldn’t be sure but that she was surprised that I had a biopsy in 2022. She said that lymph node did not show activity on the PET scan (unlike this one). I’ll have to go back and see those notes. Also, I’m not sure whether these appeared on the PET scans from earlier this year (May at UCM and the treatment planning scans from July).

In any case, the fine needle aspiration was mostly painless. During this procedure, I laid on my side and I could watch the monitor. Dr. Shah first injected some lidocaine as a numbing agent. While the technician held the ultrasound device, Dr. Shah inserted the needle into the lymph node and moved it around to suction out a sample. They went in twice to make sure there was a good sample. She said the preliminary results would be available in about 10-15 minutes, during which time I held an ice pack to my neck to prevent swelling.

I tried to keep my anxiety level down, but it did start to rise as it got beyond 15 minutes. First, if it was really clear that it was benign, a biopsy wouldn’t be needed. Second, going beyond the expected time could mean that something didn’t look right on the slides.

I was relieved when Dr. Shah returned about 30 minutes later and told me the biopsy was negative and the lymph node was reactive (not cancerous). She said that they would run more stains on the sample to rule out lymphoma and other concerns. Hopefully those will be negative as well.

Even though I left neuroradiology later than I had hoped, getting the reassurance that the enlarged lymph node is not cancerous was worth it. Again, physically I felt better after hearing the news.

So all in all, the visits with MD Anderson was positive and reassuring. Each of the doctors and providers I met with were upbeat and genuine in their desire that I stay healthy and fully functional. I also have a new set of exercises I need to incorporate into my daily routine.

Finally, in case you are wondering, the image for this post is the “Tree of Life” sculpture located in the Mays Clinic building. For this trip, I had appointments in different buildings. Fortunately, they are connected by skyway and a shuttle.

Houston Food Highlights

Of course, I can’t finish a trip-related blog post without mentioning what and where I ate. This was a little bit of a mixed bag, as my unsettled stomach meant I couldn’t really take full advantage of my unexpected “bonus” meals in Houston.

After landing in Tuesday afternoon, I went straight to Killen’s BBQ, one of the places I most enjoyed during the August trip to Houston. I figured to grab a quick snack and bring the rest of the order as Wednesday lunch, when I wouldn't have much time to grab anything to eat between appointments. I ordered moist (fatty) brisket, pork belly burnt ends, creamed corn and mac & cheese.

Dinner Tuesday night was at Nancy’s Hustle, a bistro located in the EaDo area. I was meeting my friend Josh, who’s a fellow manager in the fantasy premier league. We’ve been on a group chat for more than 2 years but this was our first time meeting in person. As expected, we had a lot in common and we talked about sports (of course) as well as travel, food, growing up Asian and many other things.

The restaurant was recommended from a few sources, so I was quite excited to try. I’d say the food was good, but it’s not the first place I’d revisit. They are famous for their nancy cakes, which are corn-based pancakes served with butter and cold-smoked trout roe and chives. We also ordered oysters, lamb tartare, a burger (served between an english muffin), and poached octopus. I had to skip dessert, as the PET scan instructions prefer a protein diet and advises against eating sugar and desserts the day before. None of the food was bad, but I don’t think any of them would have made it into my top dishes from the August trip.

Moist brisket, mac & cheese, creamed corn, pork belly burnt ends (clockwise, from right)

Nancy cakes with cultured butter, smoked trout roe, chives

With the PET scan Wednesday morning, the fasting schedule also meant that I could only have plain water (no tea) prior to the scan. Also, I couldn’t take any lozenges or mouth wash for my dry mouth, so I was quite eager to eat as soon as the scan finished at around 10:30am. Unfortunately, since I was already feeling a little nauseous - slight headache and unsettled stomach, the Killen’s brisket didn’t satisfy as much as I had hoped. I thought the headache was dehydration related but it didn’t go away until after I took a Tylenol and got the reassuring news from Dr. Phan and Dr. Gillison.

I hadn’t planned to stay Wednesday night, and by the time I re-arranged my flights and hotel, it was past 7pm. My choices for where to go for a solo dinner came down to a few options - a) return to Pappas Bros for the au gratin potatoes and steak; b) try a new Indian place; c) do something quick and casual and get ice cream. On the one hand, I wasn’t feeling 100% and it seems like my taste were dulled; on the other hand, it was my birthday week and I had gotten mostly good news, so I might as well try to enjoy. I ended picking Musaafer, a higher end Indian restaurant known for both its food and stunning dining rooms. I figured with Indian food, the bold flavors could break through my potentially dulled senses.

I couldn’t justify ordering the 13-course tasting menu, so I just ordered a few a la carte items. The lychee ceviche with a coconut and habanero pepper sauce was great and very nicely presented. It was probably the best dish I ate during this trip. The main course was “dum ki ribs” - beef short ribs surrounded by a slightly sweet curry sauce. That was also quite good. I wasn’t feeling well enough for dessert, so a much smaller order than usual for me.

View from the Traveler’s Room

cured lychee, yuzu coconut sauce, homemade tooti frooti (per the menu description)

beef short ribs, rosewater, cashews, chironji, yogurt stuffed chili

For Thursday, I started off the day getting pastries from Koffeteria, a bakery with Asian flavors. The beef pho kolache, served with a side of sriracha and hoisin, is a good example. That was quite tasty, especially since it was hot as I ate it there. I also got some pastries to eat later.

Sadly, by the time I finished with all my appointments, I didn’t have time to pick up anything else on the way to the airport, so I’ll have to save all the other restaurants for my next visit to Houston (scheduled for March 2024).

Pastry selection

Beef pho kolache with sriracha and hoisin

Thank you once again for anyone who’s made it this far into the post. I do hope that I’ll (finally) fulfill my desire to do more travel postings. I am still the process of writing up Istanbul and Kyrgyzstan, so those should be out before my next medical update in late March. Those should have some nice photos as well.

Hope you have a happy holiday and a great 2024!

In the meantime, and to avoid burying the lede, I got some potentially good news last week. Concurrent with my regularly scheduled maintenance IO at UCM, I had blood drawn for my EBV and Signatera (ctDNA) tests. The good news is that the EBV test came back “Undetected”. This is the same lab and test methodology that returned a Detected level of 56 IU/ml prior to treatment. So the “Undetected” result is a possible indication that the treatment is working as expected and the tumor is no longer progressing or possibly even no longer active. The result is better than any Detected level and certainly better than a rising level (that would be extremely concerning, as that would indicate the tumor is growing despite getting blasted with radiation). The major caveat, as I had previously noted, is that Dr. Gillison doesn’t place great significance on this test, as my levels are near the lower limits of the test detection bounds, where the margin of error is higher. In any case, I’d rather see the “Undetected” result than deal with the anxiety of seeing a rising or still detected result. So that’s a major relief.

In addition, I had my annual physical the following day and everything seems normal. Overall, it was continued good news on the medical front.

Side Effects Update

Upon returning to Chicago from Houston, I tried to maintain a low stress level and uncluttered schedule. The first two weeks were quite enjoyable, as Dr. Phan’s team recommended that I maintain a high calorie (3000+/day) diet. That meant I was able to enjoy entire late night ice cream pints guilt-free. I also tried to re-create (not that successfully) the Pappas Bros potatoes au gratin, with heavy cream and lots of cheese, and a pasta alfredo. I don’t believe I’m hyper metabolic at this point, as I am now starting to see increases in weight with increased consumption.

The radiation may have had five side effects: i) additional / increased fullness and tinnitus in the right ear; ii) sensitivity in the back of my mouth/throat; iii) increased dry mouth; iv) declining swallowing function and v) additional nasal discharge. Some of these may be long-term side effects of the 2018 radiation than the 2023 radiation, though. In addition, some of these have been short-term and already resolved, though some will remain issues for a while.

Starting with the right ear, this is expected and something that likely won’t go away. To this day, I still have slightly more fullness and tinnitus, which includes noticing more high pitched sounds. The good news is that I notice it only occasionally, and it seems intermittent as opposed to persistent. I can also usually clear the fullness with the valsalva maneuver. I think I’ll just have to get used to it.

Moving to my mouth and throat, the sensitivity was temporary and lasted through early September (about first two weeks following treatment). I’m back to normal now. After having trouble drinking my morning tea and struggling to eat my home made chicken tikka masala, I found out that the SBRT treatment zone included the back of my throat. That meant that my throat was sensitive to hot liquids, as well as spicy and acidic foods, in addition to alcohol (but I was continuing my alcohol abstinence, so I didn’t test it). Compared to 2018, this was quite mild and very easy to manage, especially since it didn’t last very long. I’m also glad this started after treatment, as it didn’t hinder my Houston dining experiences.

The dry mouth may not necessarily be related to SBRT, as it may be more seasonal. My mouth was quite dry in Houston and that continued in Chicago. My completely dry mouth - no saliva at all - would cause me to wake up both in the middle of the night and in the morning. The doctors said that my salivary glands shouldn’t have been affected by SBRT, so this could be a long-term effect of the 2018 treatment. While I previously estimated that I only lost 20% of my salivary glands, now I think the loss is a bit more - potentially 30-50%. I need to take more dry mouth mouthwash and xylitol lozenges to try to maintain moisture.

More concerning is the declining swallow capability. Again, this is more likely a long-term effect of the 2018 treatment, potentially exacerbated by the SBRT. This shows up in at least two ways. First, I have more frequent nasal regurgitation (when food or drink goes back up through my nose). Second, I’ve had more food get stuck in my throat, which I’ll cough up 15-60 minutes later. What’s concerning is that the foods that are stuck now are not especially challenging foods. That is, soft foods like grilled peppers shouldn’t get stuck, but they are. Third, I’ve also experienced uncomfortable hiccups. It’s like my whole body convulses for a few minutes, and it may be related to food getting stuck in my throat. During this time, I can’t really do much as hiccups are pretty severe, and I end up expelling food that is halfway down my throat. I’ll be sure to do my swallow exercises and get this re-examined when I go back for my swallow study and speech pathology appointments.

The nasal discharge seems to be a temporary issue that took about 3-4 weeks to resolve. I’m still not sure if this was seasonal or potentially ulceration (which Dr. Phan mentioned is an expected side effect). While I had this, it felt like my nose was constantly runny - thin, clear discharge. This is dissimilar to the thicker, green-ish mucous when I’m sick with a cold. It was more annoying than anything else, as I didn’t feel less energetic.

To summarize, the issues that were temporary and have already resolved include the throat sensitivity, dry mouth and nasal discharge, while the increased fullness/tinnitus and declining swallow capability may be more persistent. Fortunately, neither are at levels that impact my day-to-day functionality most of the time.

More Uplifting Thoughts & Activities

Having finished treatment relieves a mental burden. For much of the summer, I spent time getting second opinions (including travel logistics around it), doing my own research, evaluating the treatment options, and coordinating the logistics of it all. With the treatment now behind me, those issues are no longer draining my mental energy and thoughts. I’ve been able to focus on more fun and pleasant things. Earlier in September, Charles started pre-school. He’s doing half days every weekday. It’s the first time where it’s just him, his teachers and his classmates. This is different from the parent-tot program he did last year where either me, Aiday or Lupe were with him 1 day/wk.) He seems to be handling the separation very well, and he’s quite happy and looks forward to going. It’s also a chance for us to meet more families with similar aged kids. It’ll be interesting to see how Charles develops and who he befriends.

Finally, we are going to Kyrgyzstan for two weeks in October. It’ll be my first time visiting Aiday’s homeland. I’m feeling good and don’t have other concerns at this time, so the timing work out well. We had planned for Charles to visit his relatives in Singapore and Kyrgyzstan as our next two “big” trips. We didn’t expect that they’d happen 3 months apart from each other! I’ll plan to include some photos and a journal in a subsequent post.

Overall, I’m very satisfied with the SBRT treatment and the team at MD Anderson. SBRT (stereotactic body radiation therapy) was described in almost magical terms - precisely targeted treatment that has a high probability of success, with minimal side effects both during treatment and long-term, and given over a short time horizon. It’s almost too good to be true. For me so far, SBRT is exactly as described. Physically, I didn’t have feel any different following radiation than I did before treatment each session. Nor did the cumulative effects of the four treatments impact my energy or taste. Let’s hope the potential later on-set side effects will be manageable. Psychology, hearing the positive comments of my doctors has boosted me. Now, let’s hope the curative intent impact are also in-line with our hopes and expectations.

There are encouraging early signs that may be the case. I met briefly with Dr. Phan after my last treatment. He said he was very pleased with the treatment - my positioning / alignment was spot-on. In addition, he told me that he already saw some tumor shrinkage during treatment, which he sees in only 20-30% of cases. That was probably one of the best pieces of information I had during the trip.

I’ll break this post down into the usual segments. First, I’ll provide a medical update. Second, my food journal will cover the last days of eating as well as list some highlights from the entire trip.

Medical Update

Unlike my previous treatment days, there were other appointments at MDACC before and after my last SBRT treatment. I was scheduled for an 8:30am with Dr. Gillison (medical oncology), then 9:40am SBRT treatment and finishing with a 1:45pm with speech pathology, before flying out at 6:45pm that night. It was a packed schedule!

There were actually a few minor hiccups that made the day a little less straightforward than I had hoped. First, there was a misunderstanding about parking. I believed that I was told I could park at the radiation center even if I had other appointments. However, since my previously scheduled appointment with Dr. Phan was removed, they didn't allow me to valet park, and we had to go to a garage. Good thing Steve was there and he could do it, which allowed me to get to the 8:30am appointment with Dr. Gillison on time.

After checking in for my appt, the nurses took my vitals. To my surprise (and slight disappointment), my weight was 173 lbs - I hadn’t gained any weight despite a week of indulgence! I was doing my best to eat well more than 3000 calories a day, including double ice cream scoops at each place. Yet, I hadn’t gained any weight. Not sure if that is because it was so hot or I’m in a hyper metabolic state or something else.

I then met with Dr. Gillison’s fellow. I think that is one of the first times I’ve met with a doctor in training at MDACC outside of oral oncology. He took my history and then we waited for Dr. Gillison, with everyone aware that I can’t be late for my 9:40am radiation treatment (since the machines are booked for specific people at specific times). However, she was tied up in clinic, so I didn't get to see her before heading to my radiation. In hindsight, this probably worked out for the best, as we had a very useful and thorough discussion later.

Final SBRT Treatment & Dr. Phan

Going in to my last SBRT treatment, I was a little more concerned than normal about my comfort under the mask. While I had been congested throughout my trip to Houston, on the last day of treatment, my chest congestion did not clear as quickly (even after taking Zyrtec), and I was still coughing while in the waiting room. In addition, my nose was a little runny. Both of those would potentially make the time under the mask less comfortable - I didn’t want to risk moving if I had a strong coughing incident.

Fortunately, when I laid down on the treatment table, those issues weren’t present. I went back to my usual music selection and got as comfortable as I could under the mask with my stent. It seemed to be getting easier. Once in the treatment room, I think this was the shortest time under the mask - 20 minutes or less. There wasn’t much of an interval between the imaging scans and the start of treatment. Again, I didn’t feel anything during treatment. I opened my eyes when the nurses came in to take off the mask.

With that, my SBRT treatments were complete. The team asked if I wanted my mask and stent. Of course! (anyone who knows me knows that I’d be taking this home). They said it’s about 50/50 between those who want it and those who do not. Also, now that I finished, I could remove the bandages on my chest that covered my alignment marks. Those bandages had been on for a month and were started to get itchy and come off anyway. I was glad to get rid of them.

The care team - Kristen, Karen and Duncan - as usual, was very nice and acknowledged it was my last treatment. With SBRT treatment courses usually lasting 5 treatments or less (mine was 4), there may not be the same bond between the radiation team and the patient as there is during a 35 fraction treatment program given daily over 7 weeks. Nonetheless, I was grateful for their positivity and presence. I was also glad that Kristen was a fan of La King’s Confectionary, an old-school candy store in Galveston, where I picked up a box of treats for them.

To mark the completion of my radiation treatment, they offered me a chance to ring the bell. This is similar to the experience I had when I finished the radiation course at Northwestern Medicine, when I rang the gong. It has a cathartic experience. Hopefully one that I don’t have to do again.

Since the scheduled appt with Dr. Phan was removed, I asked to meet with him briefly. He came out to the patient waiting room for a brief chat. I didn’t get to see the radiation plan again (I had hoped to understand it better from what he showed me the previous week). His encouraging words about the tumor shrinkage more than made up for that. He explained that in the majority of cases, he may not see any change in the tumor in imaging for the first 6 months. That’s when the difference between surgery and radiation therapy became more clear to me.

Even though SBRT is sometimes referred to as SRS (stereotactic radio surgery) - Dr. Chua wrote “SRS regimen” in his recommendation letter - it is not “surgery” in a traditional sense. That is, traditional surgery would resect (remove) the tumor at the time of surgery. SBRT works in a different way. By hitting the tumor with multiple low intensity radiation beams from different angles, the combined effect is high intensity radiation to the precise 3D contours of the tumor. That is why there is so much planning involved - the exact location of the tumor must be targeted (in 3D and 4D is the tumor can move), the critical structures must be spared, the dosimetrists and physicists to ensure dose coverage without putting organs at risk, the maintenance of the linear accelerators to deliver the radiation, etc. That is also why I felt more confident in having my treatment at MDACC - they were the first ones to tell me about SBRT, and I felt like they have more experience, especially with respect to re-irradiation.

Back to the difference between SBRT and surgery, the effect of the high intensity radiation is to damage the DNA of the cancer cells. By doing so, the cancer cells cannot reproduce and then they start to die. So the effect of the radiation isn’t necessarily to immediately kill the cancer cells, but to prevent its growth. When Dr. Phan said he won’t see a response until 6+ months in some cases, that is because the tumor may still be present. Even if the tumor is no longer growing (progressing), the dead or residual cancer cells may still show up on the images as a tumor. MRI and CT scans can show the outlines of a tumor but a PET scan will give indications of its metabolic activity, i.e. whether it is active (alive). I believe that the early signs of tumor shrinkage is a good sign that the tumor is already responding to the radiation in a way that is visible on the CT scans taken while getting treated. That definitely provided a boost.

I thanked Dr. Phan for all of his care and for his dining recommendations. I showed him a picture of the beef rib from Killen’s that he recommended, and he got a kick out of that. It was about 10:45am, and I felt great.

I was in the same room and same machine throughout the treatment

The marks on my mask will be aligned with the lasers to get me into treatment position

I rang the bell three times to mark the end of my radiation

I saw Duncan, Kristen and Karen during each of my session (in TrueBeam2, waiting area J)

Treatment Plan & Dr. Gillison

We returned to medical oncology to meet with Dr. Gillison. At MD Anderson, it’s about a 5 minute walk (head & neck clinic is Elevator A, 10th floor, radiation treatment is Elevator G, basement). At NM and UCM, it’s the same elevator bank, so that provides a sense of the scale difference. I’m glad we didn’t have a rushed visit prior to radiation treatment, as we had a thorough discussion without a predetermined end point. I’ve really enjoyed the last few visits with Dr. Gillison - she has clearly explained her treatment decisions in a way that I appreciate. She provides me with both the structure of her analysis and how she weighs specific factors. I also like that she uses the exacting medical terms. I do not understand 100% of it at the time, but it gives me something to learn and look up. Dr. Gillison also acknowledges that I and others may weigh factors differently, so in those cases she provides the context and doesn’t substitute her value judgements for ours. During our first meeting with her, she seemed more deferential towards Dr. Colevas at Stanford, which seemed odd given her own stature in the field. But in more recent interactions, she has provided me with strong recommendations. My trust and respect to her continue to grow, and I have confidence in her care decisions.

My goal in meeting with her was twofold: i) what would she propose as the ongoing treatment plan, particularly as it pertains to immunotherapy and/or chemotherapy and ii) how should I coordinate care between MDACC and UCM, as I want to key care decisions to be made in consultation with Dr. Phan and Dr. Gillison at MDACC but the implementation of infusions and the handling of non-specific medical issues to be done at UCM.

We spent most of the time on the ongoing treatment plan. There were a few specific questions I had with respect to her approach, particularly since I had received opinions from Dr. Lin and Dr. Chua and I wanted to hear Dr. Gillison’s insight onto a few key issues:

• Role and value of the EBV and ctDNA blood tests as a monitoring tool and its relative value vs. imaging

• Chemo and immunotherapy drugs plan - a) if and when I should add chemotherapy drugs to the regimen and if so, which particular drugs, b) should I continue on pembrolizumab or switch to another IO drug, and c) thoughts on whether the SBRT will re-sensitize IO to the tumor

• Is there anything else I should be dong to maximize the probability of success, e.g. probiotics, stress management, etc.

The first point of discussion was the blood tests. As a reminder, the EBV testing methodology differences was something I had spent significant time considering and spent time (and money) to get a sample tested at Stanford. To jump to the conclusion, Dr. Gillison doesn’t place great emphasis on the results of my EBV tests because my levels are so low that the testing variability make the results “uninformative.” Furthermore, EBV is a more reliable test than ctDNA, so she wouldn’t use that in her treatment planning. To quote from her visit notes: “To date, imaging has been a more reliable test for him than tracking cfEBV. If cfEBV is uninformative, Signatera will be even less so.” In other words, I don’t need to go on another adventure to get an EBV send out test blood sample in the future.

Here are the results of my EBV tests, along with the location of the sample draw and the testing methodology:

• 3 July - NCC (Singapore): Detected, but not quantifiable.  Harmonized test with BAMHI primer

• 25 July - MDACC: Not Detected.  This was an “EBV Quant PCR, Plasma” test using the COBAS 6800 system

• 9 August - UCM: 56.0 IU/ml.  This was an “EBV Quant PCR, Blood (Mayo)” test using the COBAS 6800 system and performed at Mayo Clinic Laboratories

• 15 August - Stanford: awaiting results.  We drew blood in Chicago and sent the sample to Stanford Clinical Laboratories.  This is an “EBV NPC PCR Quantitative” test, which should be the same test methodology as NCC in Singapore

• 16 August - MDACC: <35.0 IU/ml. This was an “EBV Quant PCR, Plasma” test using the COBAS 6800 system. EBV was detected but below the quantitation range

• Note: the stated quantifiable lower bound is 35 IU/ml for the COBAS test (UCM, MDACC, NM) and 69 IU/ml for the BAMHI primer test (NCC, Stanford)

I’ll do by best to try to summarize how Dr. Gillison explained why these results are in line with expectations around testing variability. This may to be 100% scientifically accurate, so please let me know where I have erred and don’t take this as fact. In general, the EBV test results is based on a log scale. There are issues with “assay quantification” and “coefficient of variation” (need to better understand exactly how they are used in this context) that mean lower value scores will be less reliable than higher value scores. Since my results have low value even when detected, the coefficient of variation could be 10-15%+. That is, results of “Not Detected”, “Detected but not quantifiable”, “<35.0” and “56.0” are essentially undifferentiated. Therefore, if my post-SBRT EBV test results show “Not Detected”, it’s not necessarily an indication that the tumor is completely gone. Nor is a quantifiable result (at low levels) and indicator that the tumor is growing. However, if the trend is upwards and growing that’s a sign that the tumor is progressing (bad for me). Dr. Gillison said that results below 500 IU/ml don't hold much diagnostic or prognostic value for her. My highest EBV level was 114 in 2018, before I started first treatment, so well below her minimum threshold.

All that being said, the EBV test is still more reliable than the ctDNA test. Dr. Gillison said that the EBV test results are influenced by three factors: i) the viral load, ii) tumor size and iii) turnover (how quickly are the cells dying). The test measures the amount of EBV DNA in my blood and since I have low viral load and a small tumor, the results will be on the lower end of the scale. While the EBV DNA are in all the blood cells, finding ctDNA is like "looking for a needle in a haystack.” The Signatera ctDNA test is personalized to each individual’s tumor. A sample of my tumor (from the biopsy in March 2022) was sent to Signatera, where they sequenced the DNA. The tests looks for the tumor’s unique DNA sequences (that deviate from healthy blood cell DNA). The ctDNA is released by the tumor and is among the normal blood. Thus, only a subset of the sample will contain the ctDNA (the rest of the blood sample will have normal cells) and that sample that gets analyzed must have sufficient quantity to return a result. Given this, we suspect that the Signatera test is unlikely to provide reliable diagnostic information.

To summarize, imaging will be the best way to track whether the cancer is gone completely or if it’s coming back again. The blood tests won’t provide much value, though it may be used in combination with the imaging, especially if the blood test show a trend.

On to the second question about whether to add chemo or switch immunotherapy drugs from pembrolizumab (Keytruda). As in June, Dr. Gillison recommends continuing with the pembro only and against making any changes. Her key argument is that pembro is working and I’m tolerating it, so the downsides outweigh the potential benefits (minor). I’m not going to feel any better with changes or new drugs to the regimen than I currently feel. She said that tumor progression has a 20% growth threshold, so my tumor has NOT “progressed” under that standard and the pembro is working. So there is no reason to switch from pembro to another IO drug, e.g. nivolumab, tislelizumab.

With respect to chemo, she also recommended against adding chemo, particularly at this stage. She said that the risk of growth or spread is low in my case, so the toxicity of chemo outweighs the benefit. Dr. Lin had previously written that he is in favor of adding chemo post-SBRT and possibly switching to nivolumab (from pembro), so Dr. Gillison and Dr. Lin’s opinions diverge.

Dr. Gillison and Dr. Chua seem to have similar thoughts for the most part. Both have recommended continuing on immunotherapy-only (no chemo) and staying on pembro. In addition, they believe that the SBRT may re-sensitize IO to the tumor (Dr. Lin also agrees this is a possibility). The thought is that when the cancer cells die, they release (new) antigens into the blood stream that the IO drug can learn to attack, which would make the IO treatment more effective.

Dr. Gillison did differ slightly from Dr. Chua regarding probiotic supplements. Dr. Gillison believes that perturbations to the microbiome could be more harmful than helpful, so she recommends against adding probiotic supplements. Dr. Chua thought there was little downside to adding probiotic supplements, though the benefit was still being studied. He didn’t recommend adding supplements, but felt it was fine if I did add them. Given Dr. Gillison’s opinion, I will not be adding supplements but will continue to eat the probiotic yogurts as part of my normal diet.

I do want to acknowledge again that I am extremely fortunate to have access to the expert doctors who are considering my case with such care and diligence. Especially since my case is complicated, the range of opinions and treatment plans is going to vary more greatly than a straightforward case. I respect and appreciate all of their opinions.

The third key question for Dr. Gillison was how to coordinate my care going forward. She said she would consider three factors: i) confidence in the team; ii) cost; and iii) convenience. All of those are personal choices, and she said she’s sometimes surprised by how far some people come to see her. For me, confidence in the team is the the highest priority and right now that is with MDACC. I’ll still gather the opinions of other doctors but I’ll be placing greater weight on the opinions of Dr. Phan and Dr. Gillison.

Dr. Gillison did say that having consistency in the imaging is important. Given that, I plan to return to MDACC every few months to get my scans. I could get them at UCM, but I think the first set of scans is very important, and the comparison would be between those scans and my treatment planning scans, which were done at MDACC. So I don’t want to introduce scan variability into that comparison. It’s not the most convenient to have to take a 1-2 day trip to Houston but I’ll feel more comfortable with the scan interpretations doing so.

I’ll plan to get the ongoing infusions at UCM. I spoke to my APN at UCM about that during my last infusion, and Dr. Gillison said receiving infusions locally is reasonable. The drugs are all the same and the technicians at UCM can just as capably deliver them as at MDACC. All of my care and visit notes can be accessed by the doctors at both institutions through MyChart and the doctors know each other, so there shouldn’t be issues with prescribing / ordering care. In other words, the order to get my pembro infusion will still likely come from Dr. Rosenberg at UCM and I’ll get the infusion there, even if the major decisions around my care will be made in consultation with the team at MDACC. With respect to the side effects or other medical issues, initially I’ll direct those questions to Dr. Phan’s team as the radiation side effects are the most likely to come up. After that, potential IO side effects will likely be discussed with the UCM team. I feel good about the plan. As Dr. Chua said, my care is a collective effort at this point.

Speech Pathology

My final appointment during this trip was with speech pathology. I had wanted to do a visit earlier in the treatment cycle, in part to get a new baseline, but it was scheduled for post-treatment for whatever reason. I wasn’t sure what to expect from the appointment, as it looked like a consultation only (vs. scheduled tests).

The visit was really good. Sharon Chang, the speech pathologist, took a thorough history and wrote up very detailed visit notes, which I appreciate. I brought up some of the issues that seemed to have been more problematic over the past few months. These include the following:

• Dry mouth seems worse: not enough saliva leads to needing to drink more water when I eat dry foods and needing lozenges to moisturize the inside of my mouth

• Muscle spasms / cramping of my tongue and jaw, both on the right side: when this happens, I have to pause eating or talking. I am not able to enunciate as normal. I usually try to massage / loosen it and it usually clears within a few minutes

• Nasal regurgitation: increased prevalence (though it’s not worse from a severity perspective). This is when food, usually small foods like rice and noodles, or drink goes up through my nose when I’m eating. This is more likely to happen when I try to eat too quickly

• Swallowing: more frequently, food is not going completely down and gets caught in my throat. Sometimes not even drinking water will force the food down. It doesn’t cause me to choke or gag, and sometimes I cough it out at a later time

Speech pathology and oral oncology are similar in the sense that they are preventative in nature. Both approach radiation from the perspective of “radiation is harmful to your mouth, so we will give you routines and exercises to try to prevent or slow the decline of function.” It’s sometimes hard to take in that things will likely only get worse, and I’m just trying to slow down that rate. (This is also the case with tinnitus - it’ll never really get better - I just have to keep adjusting to the “new normals.”) So while these new routines aren’t necessarily what I want to be doing, I need to do them (so I better increase my compliance). At least I’m pretty close to fully functional now, which is a lot better than other patients.

We started off with some eating assessments. These showed some deficiencies, i.e. I needed applesauce in order to completely swallow animal crackers. I’m not sure how this compares to the pre-radiation levels, and they want me to do the barium swallow study when I return for my scans. The barium swallow study is done with X-ray video to record and assess how I handle increasing more viscous foods. I’ve done this previously at NM in 2018 and at UCM in 2022, so it’ll be interesting to see if there have been changes.

Sharon and Dr. Carly Barbon, another specialist in the lab, believe that the muscle spasms are related to weakening of my tongue as a result of the radiation. They performed an IOPI tongue strength assessment. It seemed like the results were low enough that they want me to start on tongue endurance exercises once I come back for a return visit - there wasn’t enough time on the visit to review them. These muscle spasms have been concerning me for a while and I’m glad that the team at MDACC have a plan to address it. Sharon also showed me a number of other exercises that I need to do to maintain the functionality I already have.

With that, my appointments for this trip finished. I have some new routines to follow for my oral hygiene and speech / eating functionality. It’ll take some time to get used to. For example, now that I can brush with regular toothpaste, I can rinse and spit. But I forget I can do that, so the first few days I just spat out (as I had with the high fluoride toothpaste) without rinsing. I haven’t been the most compliant patient with respect to the speech exercises, but I do want and need to do better on that. It’ll be 20 minutes a day of these exercises, but they can be done while doing something else.

For the two weeks following treatment, I’ll continue on the same diet as in Houston - high calories and no alcohol (and no anti-oxidants). After that I should be back to normal.

Houston Food Finale & Recap

The only (very minor) disappointment with the exploration of Houston food is that we didn’t get a chance to “celebrate” the end of treatment with a nice meal before flying out. With a full appointment schedule and an evening flight, there wasn’t enough time. I had hoped there would be a little time between the last SBRT and the speech pathology appointment (between 10:30am and 1:45pm), but that’s when we met with Dr. Gillison. We left MDACC at 12:30pm, so we only had a brief window to grab lunch. We headed to Feges BBQ, about 15 minutes away. We got there at 12:45pm, but the place had sold out for the day! (They open at 11am.) It was the second time I’ve tried to go and both times they have sold out earlier than expected. I’ll have to see if I can get there earlier in the day on a future visit. There wasn’t enough time to try a different place, so we just had leftovers at the condo for lunch.

After getting back from my final speech pathology visit, there was about 45 minutes of free time. I made a brief return to the Rothko Chapel. I felt like it was a nice bookend to the experience, and it allowed me to reflect (briefly) on the experience in Houston. Overall, I am very pleased with how all the treatments went and how much I was able to be active and explore the city during treatment. This course of radiation was much easier than the 2018 course, and hopefully it’ll be the last time I need to go through it.

The final stop of our eating tour was a stop at milk + sugar, an ice cream shop. This was the sixth stop on my ice cream tour, each with double scoops. (That’s part of the reason why I’m surprised I didn’t gain any weight.) This seemed like a good way to cap off the trip.

Our last full day of eating was the day before, on Tuesday. That was a “free day” with no appointments. The first stop that day was BBQ - this time at J-Bar-M. This was a place that was featured on Top Chef and also Texas Monthly’s Favorite Texas Barbecue Bites of 2022 for the smoked half chicken. I ordered the two meat platter, with brisket and the chicken, along with fried rice and the spicy cream corn. To be honest, I was a little disappointed. The brisket was cut quite thick, so I had trouble eating it - I needed a lot of water. The chicken itself was good, but similar to the brisket, it was a slightly dry for me (perhaps my mouth was not great that morning). The sides were fine but not at the same level as the sides at Killen’s. In hindsight, we probably should have gone to Feges on Tuesday (which is supposed to have great sides, too) and saved J-Bar-M for Wednesday, as J-Bar-M is very large and there was no line.

After lunch, we stopped by POST Houston. This is the old central post-office that has been converted to a co-working and event space, with a good food hall. In fact, Golfstrommen, the #1 place on the Houston Chronicle’s restaurant critic - Alison Cook - restaurant recommendation is located in that food hall. We didn’t have a second lunch there, though. I did get ice cream from Flower & Cream, which was quite good, but also overpriced ($9 for double scoop).

The final dinner was a highlight. This was at MF Sushi, a place recommended by Dr. Phan and others. It was close to the condo, and since temps cooled to the low 90s, we decided to walk the three blocks there. They had sushi counter seats available, so we took those, but ordered a la carte (vs. omakase). There were six sushi chefs working - it seemed like there were two teams of three - one chef to cut the fish, one chef to assemble the nigiri, putting the fish on the rice, and a different chef putting the sauces and garnishes. We ordered their signature nigiri and some other dishes. These were all fresh and very well prepared. My favorite bites were the last two we had - king salmon nigiri and the tamago (egg omelette). The whole tamago was sitting in front of us the whole time, so it felt appropriate to order it. It had great texture and the right amount of sweetness for me. The only “downside” is that I’m not sure sushi is the most economical way to consume 3000 calories, so I may have fallen short that day.

For eight days, I did my best to revisit favorites and try out new places. We hit nearly everything on my list (I’ve been to 35+ distinct restaurants on my 5 trips to Houston to date). For this trip, we didn’t visit places in Bellaire or Katy, the Asiatown areas that feature more Asian and fusion foods. There’ll be time to remedy that on future trips.

Brisket, smoked half-chicken, spicy creamed corn, fried rice (clockwise, from top right)

Specialty Nigiri - most of these have a sauce and garnish

King salmon nigiri

Tamago, uncut

Walking on the rooftop, trying to take a video while still holding onto my ice cream (which quickly melted)

Final bite in Houston

Favorite / Most Memorable Bites (August 2023 only)

• Au gratin potatoes, dry-aged ribeye, Echezeaux Grand Cru Burgundy from Pappas Bros Steakhouse

• Moist brisket, pork belly burnt ends from Killen’s Barbecue

• King crab sushi and tamago sushi from MF Sushi

• Lemon poppyseed muffin ice cream from Cosmic Ice Cream Co

• Mango lassi milkshake from Burger Bodega

• Shrimp from Jun

• Queso & chips from Pappasito’s Cantina

Now that the eating is over, here are some of my highlights. We didn’t have a bad meal on the trip and had some exceptional ones. Overall, the standout meal was Pappas Bros Steakhouse. Outstanding service, excellent steaks, fantastic wine list. Plus, the au gratin potatoes were so incredibly rich and tasty. I want to re-create it at home, but can’t find a recipe online. It’s not a “basic” au gratin, as it contains both bacon and béchamel sauce (not just cream and cheese). This is a dish I’d consider ordering for pickup before/after a flight to Houston. The favorite BBQ place from this trip was Killen’s - fantastic meats and really good sides as well. It’s a little further away, so not sure how easily I can return there. (I do like Truth BBQ and Blood Brothers a lot and still need to try Feges, so lots to explore.) Of all the ice creams, the lemon poppyseed muffin ice cream from Cosmic and the mango lassi milkshake from Burger Bodega (made with Craft Creamery ice cream) would the be ones to get again. The cold shrimp in aguachile sauce appetizer from Jun packed a lot of flavor. Finally, I mention the queso from Pappasito’s Cantina. I just couldn’t stop eating it for some reason. The chips were very thin and light and the queso (and the salsa) were tasty. In fact, the queso was so good that it ended up on my T-shirt more than a few times. Maybe I just need to learn how to eat more cleanly.

I think that’s a wrap for the 8-day trip to Houston. In the end, it pretty much exceeded all expectations. Texas was even hotter than expected, the food scene was quite delicious but most importantly, the treatments at MD Anderson went as well as they could. The early indications of tumor shrinkage / response is not something I expected, and hopefully will mean good things to come.

My scans are scheduled for early December, 15 weeks following treatment. It’s a little later than expected (Dr. Phan had mentioned 10 weeks). Getting insurance approval for a PET scan (needs to be 12+ weeks) plus Thanksgiving holiday is probably the reason for the timing. I’ll plan to provide interim updates before then.

Thank you again for reading and your support.

SBRT Treatment

The treatment has gone according to plan without any complications or unexpected side effects. I’m tolerating it well and hopefully it’ll be as effective as we hope. It’s gone well enough that it hasn’t slowed down or caused disruption to the Houston exploration time. At this point through 3 treatments (only 1 left), I’ve had 27 Gr of radiation, which is the equivalent of nearly 3 weeks of standard daily radiation. I’m definitely feeling a lot better now than I did in 2018.

To prepare for each treatment session, I have a routine to make myself as comfortable as I can. For whatever reason, I wake up each morning in Texas with congestion and coughing. This concerned me at first, as that would make laying still quite difficult, but the congestion clears with an anti-histamine (Zyrtec) and being out of the condo throughout the day. Perhaps it’s an allergy? Second, I have to address my dry mouth, which seems worse the last few weeks. I drink plenty of fluids and take xylitol lozenges. Since my tongue is held down by the radiation stent, I can’t run it across the roof of my mouth during treatment, so I try to make sure I have enough moisture there before getting under the mask. Finally, my neck and upper back muscles have been tight for a while. I brought a heating pad and a massage ball, which I use to try to loosen up the muscles. All of these have helped, as I’ve been able to get comfortable under the mask.

So far, as predicted by Dr. Phan, I’ve tolerated the radiation well and haven’t had major side effects. One issue is that a few hours after treatment, I get some more ear fullness and tinnitus on my right side only, similar to the feeling I get after receiving a pembro infusion. The care team said this is expected inflammation, and they have prescribed dexamethasone, a drug I’ve taken before without issue. The fullness usually resolves within a day (before the next treatment). Besides that, my mouth and taste have remained intact, and I’ve been able to eat normally. I don’t think I’ve had increased fatigue. I did take a nap one day, but that was more likely due to the combination of Texas heat and overindulgence of smoked meats, i.e. “meat coma.”

The radiation treatment on Friday (session #2, day 3) went as well as could be expected. I went straight to the radiation treatment center and valet parked the car. They brought me back to the radiation machine (Varian TrueBeam) right after I checked in for my 10am session, so I didn’t even sit down in the waiting area. Since the first treatment went well, I didn’t want to change anything, so I kept the Radiohead music selection. There was a little delay getting in starting the scans, which they explained as waiting for the doctor so that they could do the CT scan and then start the radiation right after. When everything was all done, it was 10:25am, so I spent about 20 minutes under the mask, as expected. It couldn’t have gone any smoother.

The third session on Monday went similarly well. I didn’t go back to the treatment room until about 10:30am, so I sat in the (cool) waiting room for ~40 minutes watching videos of Charles to help me relax. The nurse said I did well during the treatment, so that was good to hear.

I asked the nurses to take pictures of me under the mask, so these will provide a sense of what I look like during treatment. When I first put in the stent and they clamp down the mask, it’s not that comfortable. I also have to remember to tilt my head back, as that would keep the alignment more inline with the planning sessions. It takes a few minutes to get used to being under the mask, but after that initial period, I feel could be under the mask for longer. To get a sense of how tight the mask is, when I tried to open my eyes during session #3, my right eyelid remained closed. The mask is in contact with all parts of my face, though perhaps there is a little more pressure on my left forehead. There are also holes for the radiation stent around my mouth, so that may be held in place by both my mouth and the mask. The fit around the shoulders is a little looser, and the nurses said that is fine, since only my head is getting treatment.

My custom mask and backing piece, with the alignment marks

Once I put in my radiation stent and get secured under the mask, I am ready for scans and treatment

Total time under the mask is about 20 minutes, including 7 minutes of beam time

The blanket is needed for warmth. Not sure what the blue light represents - I don’t really notice is with my eyes closed. The radiation beams moves around me during beam time

Houston Calorie Quest

The exploration of Houston’s diverse food has been a fun one. We returned to a few places and have the opportunity to try out some new ones, particularly when Aiday and Charles were in town. It hasn’t been hard to meet the 3000+ calories a day goal. Here is a quick rundown of places so far (days 2-6 (Thu-Mon):

• Barbecue: Killen’s Barbecue

• Asian fusion: Da Gama (Portuguese-Indian), Jun (Chinese-Mexican), Kau Ba (Vietnamese-Cajun)

• Seafood (in Galveston): Black Pearl Oyster Bar, Gaido’s

• Tex-Mex: Pappasito’s Cantina

• Returning favorites: Hugo’s, Lucille’s

• Ice cream: Amy’s Ice Cream, Cosmic Ice Cream, Craft Creamery, Honeychild’s Sweet Creams

Perhaps my favorite of the places so far has been Killen’s Barbecue. With Thursday (day 2) being a non-treatment day, we decided to drive to the original location in Pearland, about 25 minutes away. This had been on my list and when both Dr. Phan and the server at Pappas Bros Steakhouse mentioned it as a favorite, we definitely had to go. We got there a little after 11am, and to our relief, there was no line. My initial order was my usual sampling of brisket, pork rib, sausage and a side, plus brisket tacos. However, I had forgotten to order some of the signatures, so I added a beef rib and pork belly burnt ends. All of it was excellent. The “moist” / fatty brisket was one of the best I’ve had and I currently prefer that the leaner brisket due to my dry mouth. The pork belly burnt ends had a really nice combination of smoke and sweet, and it’s not something I’ve had much before. The brisket tacos were really good too - the pico de gallo and the tomatillo sauce go well with the brisket. The beef rib was huge - 1.5 lbs! - so we only took a few bites to enjoy the flavor before taking it home. The sides were really good too - I had creamed corn and mac & cheese. We had over ordered, so the remainder became a leftover lunch on the weekend.

Original location in Pearland, about 20 minutes south of Houston

We ordered a lot to sample. This includes the brisket meal plate with baked beans and creamed corn (top left).

Mac & cheese, moist (fatty) brisket, pork rib, jalapeño sausage. The brisket was excellent. The rib was a little sweet

Brisket tacos - the pico and tomatillo sauce make this really nice

Beef rib - this was 1.5 lbs

Pork belly burnt ends. First time I’ve had these and really liked it

The rib alone was enough to feed us for two meals

The other restaurants were all quite good with a few standout dishes at each. Houston is one of, if not the most, diverse cities, and the food reflects the different cultures in a natural way. We were excited for Jun, run by Evelyn Garcia (Top Chef finalist) and her husband, who is a Chinese chef. The fried chicken and the gulf shrimp in aguachile were our favorites. At Da Gama, we liked the piri-piri chicken and the spiced scallion naan the best. The piri-piri chicken had great seasoning and the meat was very moist, especially for being grilled. Kau Ba is a Vietnamese restaurant whose chef has been featured on multiple food shows. I wish we were hungrier that day, as we didn’t sample as much as we could have. I did enjoy the king crab banh mi quite a bit. Going back to favorite places, the fried green tomatoes, biscuits and fried chicken at Lucille’s are still outstanding. I’d been to Hugo’s before for dinner, but we went for the Sunday buffet brunch. It’s a legendary spread with lots of choices. Charles ate quite well here and he especially liked the cookies. They also had an excellent Mexican hot chocolate.

Gulf shrimp appetizer - really nice aguachile sauce

Fried chicken with thai chili sauce. Good flavors - chicken was moist, breading was medium crispy

Piri-piri chicken - chicken was extremely flavorful and moist. Didn’t even need sauce

Naan - with scallion and plain

Beef & shrimp fajita, jalisco-style (roasted peppers, mushrooms and jack cheese)

King crab banh mi sandwich

Dessert table at Sunday brunch buffet

Texas Attractions

This was also Charles’s first time in Houston, so explored a few places with him. The condo is near the Children’s Museum Houston, so we went a few times. It had a number of interactive STEM-based exhibits, so that was a nice way to spend some time.

The highlight of the weekend was a trip to the Space Center Houston, the visitor center to the Johnson Space Center. On display are a number of historical spacecraft from Gemini, Mercery and Apollo programs as well as the Skylab. Charles also got to touch a lunar sample. We also got to go inside the Space Shuttle on top of the 747 transport craft. When we were in the gift shop, Charles found a Saturn V cozy that he quite enjoys. We think he enjoyed the visit, as he is quite content to watch videos of rocket launches and about the space program.

Space Center was quite crowded (and extremely hot) on the weekend, and we didn't get to do a tram tour. Steve and I ended up going back on Monday to do the Mission Control Tour. We took a tram to the Johnson Space Center (the control room for the ISS is a floor below the restored Apollo control room) and watched the recreation of the lunar landing, with the screens displaying what the engineers saw that day and time. NASA has faithfully restored the mission control room used in the Apollo missions, down to the cigarette butts and ashtrays on the desks. It was a good experience. We also took a separate tour to see the Saturn V rocket (on its side). The size and power of that rocket is still quite impressive.

Charles’s first visit

Space Shuttle on top of 747. The best view is upon entering the parking lot

Mission Control Room from 20 July 1969, when Apollo 11 landed on the moon

As we were so close to the Gulf of Mexico and we hadn’t been there before, Steve and I took a drive to Galveston (we were already halfway there at the Space Center). There is historical downtown architecture and a railroad museum, so it was worth the drive. We drove by the East Beach, where a development of luxury houses is being built. They had a pretty interesting architecture, with the homes featuring large verandas and almost built on stilts. They are made to withstand big storms. Too bad I forgot to take a picture.

We figured that the seafood would be freshest where it is caught. We actually weren’t so hungry that day (Monday, day 6), but we did manage to eat two dozen gulf oysters at Black Pearl Oyster Bar and then had more seafood at Gaido’s, an old school restaurant open since 1911. The gulf oysters are a bit larger than other oysters. They worked well as a baked dish, but in its raw form, I don't think they are as flavorful (not as briny or mineralogy) as oysters from the coasts. We weren’t that hungry when we got to Gaido’s, so just an order of crab stuffed shrimp for me.

Raw Gulf oysters - tend to be larger than coastal oysters

Three preparations of cooked oysters - Haelen (crab meat, cheddar cheese, garlic), Rockafeller (spinach bacon cream sauce), Diablo (shrimp, cheddar cheese, spicy sauce)

To make sure I’m meeting or exceeding my calorie goals, I’ve been eating a lot of ice cream. On Monday, we went to Cosmic Ice Cream, located in a strip mall in Webster. The texture of this ice cream was exceptional and the lemon poppyseed muffin flavor may be the favorite flavor so far.

Texas Heat

Believe it or not, it’s actually been hotter in Texas than expected. Like the rest of the country, summer 2023 has been warmer than previous years. When I landed last week, it was 103F at 6pm. The highs each day have been 100-106F, and it remains hot throughout the day, especially when the sun is out (nearly every day). Normally, we would talk a few blocks to dinner. But when the car temperature registers 111F, we figure the drive was worth it so we didn’t have to spend the first 20 minutes cooling down from a 10 minutes walk. Coming out of that dinner at 9pm, it was still in the 90s but breezy. It’s probably the coolest a 93F temp has felt to me. Good thing air conditioning works. It’s too hot to do any activities outside, so no walk in Hermann Park, even though we are across the street from it. I still have to bring a jacket when I go to MDACC, it feels like the radiation treatment waiting room and the treatment room itself are in the high 60s.

We decided to drive 3 blocks to dinner since the temp was 111F

Even at 8pm at night, it’s still 100F. At 9pm, it drops but still in the 90sF.

There is only 1 more SBRT treatment left and hopefully it goes well. I’ll provide another update after I finish treatment, including information on what the treatment plan going forward will look like. I have a few appointments with multiple doctors and specialists at MDACC on Wednesday (23 August) before I leave Houston.

Thanks again for reading and for your support.

Fortunately for me, even though it wasn’t on the appointment schedule, I was able to meet with Dr. Phan after my radiation session. I had a few questions and concerns about the treatment and how it went (detailed below, as it was different from expectations). He gave me the good news. First, he said that things looked great - my positioning in treatment was really good and they were able to maintain a 0.1mm precision. I asked him about the tumor growth rate. He said the the volume growth was only 5% (I feared it was 400%+) and since the radiation plan had to cover that area anyway, it didn’t change the plan. We also discussed some expected side effects and things I can / should do to make sure the treatment is most effective. As far as food and eating, he said that I should be able to have my normal diet and don’t need to worry much about spicy or acidic foods - they won’t affect the radiation and my mouth shouldn’t be sensitive. I also asked him about alcohol and whether I can have a glass of wine with dinner. Initially, he said that there isn’t data about it and that’s it’s safer to abstain, but when I told him I was going to dinner at Pappas Bros Steakhouse, which has a huge wine list, he sort of lit up. He said it is a place he likes himself, so he allowed me to have 1 glass of (fine) wine but then I should abstain for the duration of the treatment and then two weeks after. He also told (prescribed?) me that I should be eating 3000+ calories a day during this treatment. Thus, I am going to over-order, indulge, and visit many places all under the guise of it being “medically necessary” - this will be a guilt-free week of sampling Houston’s cuisines. Dr. Phan shared some of his favorite places, and good thing I have reservations at some of them. Not only am I trusting him with my medical care but also with food recommendations as well. I was on quite a high when leaving MDACC.

Going back to the start of the day, I had three appointments scheduled starting with a blood draw, then a visit to oral oncology and finishing with the radiation treatment. After my adventure getting blood drawn for the Stanford EBV test, this was much more straightforward. This is for the EBV test that I requested. The EBV test from the sample drawn at UCM on 9 August came back with a detectable level - 56 IU/ml. So I’m glad at least one lab (UCM sent their test to Mayo Clinic, which also uses the COBAS 6800 system) showed levels. This result also seems consistent with the NCC result, as the NCC tested detected EBV, but the level was below their 69 IU/ml quantifiable threshold. I’m not sure if the EBV levels are rising, so this test at MDACC could provide insight into that. I think I’ll still likely get both EBV tests going forward, since there are sensitivity differences arising from both the test methodologies as well as the testing laboratories. I want all the information I can get.

My visit to oral oncology went smoothly as well. I received my acrylic radiation stent and my new fluoride trays. They also gave me molds of my teeth (I guess in case I needed to have more trays made??). During my treatment planning sessions, the radiation stent was a wax piece, which had some give. This finished stent is clear hard acrylic. It took a little getting used to, as my top teeth didn’t seem to have as much to sink into, so it felt like my lower jaw was more free to move. It just wasn’t as comfortable, either.

The fluoride trays are something I’ve used before, so I’ll go back to that. This will change my oral hygiene routine a little bit. I’m currently brushing with 1.1% fluoride toothpaste twice a day - no rinsing and no eating/drinking for 30 minutes after brushing. With the new program, I can switch back to a regular toothpaste (which will allow me to rinse and spit). I have to use the fluoride trays just 1x/day for 10 minutes, followed by 20 minutes of no eating or drinking. In a way, this may be more convenient, even though the trays themselves are not as easy - it’s hard to talk while they are in. The visit was with Dr. Aponte-Wesson and Dr. Salazar (fellow), and they were both very positive and optimistic.

This is clear acrylic and much harder than the wax stent used in planning

The fluoride trays will be part of my new oral hygiene routine

It was now time to start the radiation treatment, scheduled for 11am. I walked over to the Radiation Treatment Center and had a slightly different check-in process. Up until now, I had only seen the MDACC doctors for consultations, but I became an active patient receiving care. I had to go to the treatment check-in location (in the basement) and get my red radiation card. This is what I’ll scan each time I check in for radiation treatment. Also, since I’m receiving radiation, I get to use the complimentary valet parking service just outside the treatment center (vs. parking in the public garage and walking 10 minutes through the main building to get to radiation center). That’s a little bonus.

I noticed in the waiting area that the radiation treatments were scheduled 30 minutes apart (they showed the schedule for the specific machines, not a combined schedule), which made me think this really would be quick and efficient. I’m familiar with the radiation treatment process, so when I got called back to the radiation room, I changed (just had to take off my shirt, remove my glasses and mask) and laid down on the table. I put the radiation stent in my mouth and then the technicians put the mask over me to keep me in position. For SBRT, they take the CT scan, which is reviewed by the doctor before treatment starts. I felt pretty good during this process. Despite some congestion earlier in the morning (likely from travel and / or hotel allergies as it cleared up throughout the morning) and the new stent, I wasn’t uncomfortable. After a few minutes, they said the doctor was behind schedule, so they took off my mask and stent, so I just lay on the table waiting.

Once the review was completed about 10 minutes later, I put the stent back in and the mask went back on. For some reason, the stent position felt a little different this time. Also, the mask wasn’t attached properly by my right shoulder, so I had to signal to them to come back in and clamp it down. It still felt a little looser around my shoulders than it did previously. It was now time for treatment, which based on my previous understanding would only last for about 7 minutes. I tried to get into my usual quasi-meditative state - trying to relax and stay as motionless as possible.

Before starting treatment, the technicians had asked what music I wanted while I was getting treated. I hadn’t thought about this before, and the first thing that came to my mind was Radiohead. When the treatment started, “High and Dry” and “Fake Plastic Trees” played. I figured that would be 7+ minutes, so I should have been done. But then more and more songs started playing while I didn’t hear the machine moving, so I wasn’t sure if there was a problem. Then the technician came in and said I had 3 more minutes to go. That seemed odd. Fortunately I was still feeling fine under the mask.

Finally, she came in and removed the mask and said I was done. There seemed to be problem with one of their computers going down, which caused the delay. It was now 12:13pm, so I’d been in the treatment room for over an hour! I had been under the mask for at least 40 minutes. I noticed that the mask was on tight enough that it left a mark, especially on the right side of my forehead.

She said that Dr. Phan would see me after this session, so I was hoping that none of my concerns - positioning, longer duration on the treatment table, computer issues - caused any issues with the treatment. Fortunately, Dr. Phan reassured me that things went great - he was very pleased with the positioning and he showed me some of the images of the treatment plan, as well. It was an excellent start to the treatments.

Eating & Rothko Chapel
Since I left MDACC about 45 minutes later than expected, and I hadn’t eaten much that morning (since I wasn’t sure if there were any radiation restrictions), I was quite hungry after radiation. Since we had the steak dinner coming up, we decided to switch plans from BBQ and instead headed to the breakfast klub, a place that serves breakfast/lunch (closes at 2pm). I ordered the signature wings & waffles, and it hit the spot. The wings had a crispy batter and juicy meat inside, while the waffle was moist and fluffy. It was also quite a friendly place - turns out the guy who greeted and said goodbye to us at the door was the owner.

After lunch, we had a few hours before dinner. I decided to go back to the Rothko Chapel (https://www.rothkochapel.org). This is a place I’ve visited before, but it felt different this time. I’m not a religious or particularly spiritual person, but this space has a meditative and meaningful aspect to it. Mark Rothko, an abstract expressionist, is a favorite artist of mine, and I’ve been to the Rothko rooms dedicated to his works at the Tate Modern in London and at the National Gallery in Washington, DC.

Being present is an aspect of the chapel I really appreciate. Before entering, there as signs asking visitors not to interact with technology (including no photographs at all) and not to talk. The chapel really is a quiet escape from the surroundings - the noise of the city, the Texas heat (it’s been over 100F every day), and all the other distractions in your mind. For me, it’s a place for reflection and quietness. There are 14 works in the octagonal interior, with some walls having single works and some having triptychs. Most of the works are monochromatic in either black or purple. However, there are subtle variations in color and texture. Some have more vertical brushstrokes; some have more horizontal brushstrokes. To me, the effect is mesmerizing. As I sat there and looked at a single work, I could see more and more the longer I looked. (Granted, the adjustment from the bright sun to a darkened room may have played a part in the first case of this but it happened with all of the works.) The art also had an interactive aspect. Depending on where I stood - distance and angle - I would notice different features. When I walked around the room clockwise, I would notice different subtleties that I didn’t notice when I walked around counter-clockwise. The work revealed itself depending on each moment. I do plan to go back on a different day and different light (i.e. morning vs. afternoon), so that I can have an experience where the sun and light interacts with the works differently. I’m sure I’ll be visiting the Rothko Chapel during future return visits to Houston.

Welcome sign

Exterior - no interior pictures allowed

Since it was about 2 hours since lunch and I needed to keep up my caloric intake, we figured it was ice cream time! We went to Craft Creamery for a fix. We had already had some of their ice cream in the milkshakes at Burger Bodega, where we ate dinner the previous night. The smash burgers were really good and crispy; the fries were excellent; and the mango lassi milkshake was especially noteworthy, so I figured to get more ice cream. Once again, we interacted with the chef/owner of the place and enjoyed his creations. All of his ice creams are custard-based (with egg yolks) and he had some unusual flavors, including brisket and cacio e pepe. I tasted those, but opted for more traditional flavors - an orange creamsicle and strawberry basil.

Wings & Waffles are a signature dish

Flavor selections

Strawberry basil and Space City Orange (left); mint chocolate chip and lemon thyme (right)

Smash burgers & fries. Fries were excellent

Mango lassi milkshake

After resting for a little bit (quite an active day 1 in Houston), it was time for the main event - steak dinner at Pappas Bros Steakhouse. It seemed like an appropriate place to celebrate Steve’s retirement. The restaurant is an OG Houston steakhouse known for its wine list (206 pages) and hospitality.

The first order of business was to select a bottle. I had studied the wine list with a friend, and we had found some really interesting values. However, given that I could only have one glass, we had to focus more on the half bottle list (only 2 pages, so much more manageable than the remaining 204 pages). We decided on a 2017 Echezeuax Grand Cru from Mongeard-Mugneret. The somm said it was by far the best half bottle pinot on the list and having a grand cru seemed appropriate for the circumstances. Once we ordered it, the somm came back with “appropriate stemware” (his words), which turned out to be real crystal Burgundy wine glasses from Sophienwald, an Austrian producer of hand blown stemware. The wine was excellent, as expected, and got better with more time out of the bottle.

Pinot noir from Cote de Nuits

Stemware for our wine

The steakhouse experience exceeded expectations. Normally, I do not gravitate towards steakhouses, but Pappas Bros reminded me how they can be so good. The service was exceptional - they anticipated needs and were subtle and approachable. The food itself was also fantastic. Our server explained how they age their beef, which is all USDA Prime grade and all of it aged in-house, so they have full control. The bone-in steaks are aged for ~21 days, as the bone starts to break down after that. The boneless dry-aged cuts are aged for 38-40 days, so they develop more umami flavor but before they get that “funk" note. The restaurant displays their meat cuts in a counter when walking in, so we had a preview. Steve decided to order the bone-in filet mignon (the server recommended “medium rare plus” since the steak gets rarer near the bone) while I went with the dry-aged ribeye (normal medium rare). Of course, the steaks arrived perfectly cooked and seasoned. Unlike other steakhouse, this one does not offer any sauces for the steaks - they all come out with just salt, pepper and butter. That’s all that’s needed for their steaks, as they had some much flavor from the char and aging.

Before the steaks came out, we had ordered the one of the appetizer specials - thinly sliced Spanish octopus with arugula and aioli and turtle gumbo soup. We really like both of these, but wanted to save room for the main event. In addition to the steaks, we also opted for the potatoes au gratin. This was an excellent version and super rich. As an added bonus, there were bits of bacon hiding beneath caramelized béchamel and cheese sauce. While very tasty, the potatoes did not get finished, as focused on finishing the steaks and decided to take the au gratin potatoes back.

Spanish octopus with kalamata olives, aioli and arugula with charred lemon juice

Turtle gumbo with sherry. This was very flavorful. Gumbo did not have rice

Dry-aged 16oz ribeye, perfectly cooked to medium rare

Au Gratin Potatoes. I think this dish alone could have gotten me to 3000 calories for the day

We knew we had to get dessert. As our server said, Pappas Bros is place for indulgence. Also, the maitre d’ stopped by at the beginning of the night to let us know that dessert was their treat for celebrating Steve’s retirement at their establishment. Our server brought the dessert cart out, so we got to see almost all of the desserts (except the cakes that were deemed too tall to fit on the cart and show). We decided to get the key lime pie. The restaurant pulled out the stops, so there was a “Happy Retirement” inscription on the plate. At this point, we didn't have much room left (seems like my normal stomach was pushing against my dessert stomach and making it smaller). We threw in the towel after a few bites, with another item for the goodie bag to go into the condo fridge for later consumption.

This was the dessert we ordered, with a special inscription

Overall, I would definitely recommend Pappas Bros Steakhouse as a place to celebrate and especially for those interested in wine, as there could be incredible values in their wine list. The restaurant takes a standard mark up to their cost (results in around 100% above retail, so less than other places where wine is 2-4x+ the cost of bottle). In some cases, the restaurant might get a really good deal on wine or there could be older vintages that are still available, so there are good values on the list. Their cellar includes bottles as far back as the 19th century and lot of options for wine from the best vintages from around the world.

Overall, day 1 in Houston got off to a flying start. Not only did we get to visit excellent restaurants, but I got to visit a favorite quiet spot. To top it all off, meeting with Dr. Phan to hear that the treatment went very well from his perspective was great news. It’ll be hard for the rest of the time in Houston to top this, and hopefully treatments will continue to go smoothly and effectively.

Logistics and Meal Planning

I spent some of the time working out logistics and planning for the 8 nights in Houston for treatment.  For housing, we decided to look for patient / corporate housing, i.e. furnished apartments vs. hotels that are close to or attached to the hospital.  I eventually found a 2 bedroom apartment that looked well maintained and convenient - close enough but far enough away not to see MDACC.

More fun was to figure out the restaurants and eating plans.  There is a preliminary itinerary in place, so hopefully I can make it to all the places.  I’m still waiting to hear back from the radiation team on whether there are any restrictions or sensitivities that I’ll need to manage during and after treatment.  We’ve talked about how SBRT is more targeted and should have fewer and less toxic side effects than my first radiation course, so hopefully that means I can eat the spicy and acidic foods and perhaps even have a nice glass of wine with dinner.  This, of course, also assumes the treatments won’t cause fatigue, and I can be an energetic as I hope to be. I do have lunch plans and dinner reservations planned for almost all of the eight nights I’ll be in Houston.

Anxiety Issues

Overall, I think my anxiety remains elevated, but for different reasons than pre-recurrence.  Since the conclusion of systemic treatment in August 2022, a primary source of anxiety was whether the cancer was coming back, followed by whether the immunotherapy was causing issues.  So any time I had ear fullness would result in fear that the tumor was coming back.  But now that I know there is a progressing tumor, the anxiety is for different concerns.   

There was one situation that was especially nerve-racking.  I saw in MyChart that the MDACC CT treatment planning scan from 26 July had measured the tumor as “1.9cm in the axial plane…and the longest dimension in the craniocaudal direction is 2.1 cm.”  I wasn’t sure how this compared to the MRI scan from 8 May (79 days earlier, done at UCM) that showed a “residual tumor that measures about 8 by 13 mm in axial section.”   

We were told the tumor was slow growing and that there wouldn’t be an issue to seek additional opinions and slightly delayed treatment.  But the CT measurement sent me down a rabbit hole of how to measure tumor volume, tumor growth rates, differences in CT vs. MRI scans, and what it all meant.  Did I wait too long to start treatment?  Did the volume grow 4x in that short period of time? Would this mean the success rate would be reduced? Was there a way to start earlier? 

I messaged both Dr. Chua and Dr. Phan.  They both responded promptly and tried to allay my concerns.  Dr. Phan said that he’s “not concerned about growth rate and this doesn’t alter the radiation plan or expected outcomes.”  Dr. Chua sent a similarly reassuring message noting the differences may be caused by imaging modalities.  After hearing from them both, those concerns were no longer at the forefront of my thoughts.

That being said, I’ve had some more of the ear sensation - not yet painful but something I can feel.  I felt this more starting the weekend of 4 August, a few days after hearing back from Dr. Phan and Dr. Chua.  So even though they told me it’s not a concern, I still have fears.  The anxiety levels were slightly lessened after I got my immunotherapy infusion on Wed, 9 Aug.  The sensations didn’t happen as often after the infusion, so that was a relief.  I’m not sure if it was because of the infusion, a late side effect from Covid, tumor growth or anything else.

EBV Test Adventure

Another issue that consumed considerable time is the EBV test.  This is the blood marker that is often used to track NPC cancer.  Prior to my first treatment in 2018, I had detectable levels of EBV but since then, my EBV levels had not been detected.  As late as February 2023, I had negative results (undetectable levels).  When I got tested for EBV in Singapore, it showed detectable levels.

I wanted to get tested again by my care team at both MDACC and UCM before starting SBRT treatments.  This would provide the baseline to help determine post-SBRT treatment.

• Detected pre-SBRT, Detected post-SBRT: tumor not completely killed; would need additional treatment - chemo+IO most likely

• Detected pre-SBRT, NOT Detected post-SBRT: tumor may be killed completely; may not require additional treatment

• NOT Detected pre-SBRT: post-SBRT results not meaningful since the baseline is Not Detected.   No way to determine effective of SBRT based on EBV alone

MDACC drew a sample on 25 July and it returned a “Not Detected” result from their own lab.  Dr. Chua told me that the test in Singapore uses a different methodology that was validated with Asian hospitals as well as Stanford and UCSF.  This “harmonized” test uses a BAMHI primer.  Even though the lower bound of the quantifiable results is higher, it seems to be more sensitive than the test used by UCM, MDACC and NM (based on the Roche COBAS 6800 System).   So MDACC’s test would not be useful to make treatment decisions.

When I went for my infusion at UCM on 9 August, they drew blood for both the EBV test and a ctDNA test.  But their EBV test uses the same system as MDACC.  They also told me that they could not draw blood for a “send out” test.  I got a similar response from MDACC, so there wasn’t a good way for my treating hospitals to send a sample to Stanford.

That started me on the path of contacting Dr. Colevas from Stanford directly to see there was a way to get the test done at Stanford’s lab without requiring me to fly out to Palo Alto each time.  He provided me with an order and some instructions and then my journey to get this sample drawn began.   

With less than a week before starting treatments, this turned into a bit of a time crunch.  We didn’t get clear instructions on how/what to draw until Sunday, so I only had Monday and Tuesday to get this done before treatments start on Wednesday.   

Fortunately, I think we have successfully sent a sample to the Stanford lab.  I was really lucky to have two people go above and beyond to help me - my friend Sarah, who has a private practice in Chicago and Naomi, a supervisor at Stanford Clinical Laboratories.  Their persistence, diligence, patience, and optimism enabled me to get this done.  Naomi provided the detailed instructions for what needed to be drawn and how it needed to be processed. With this information, I went to two diagnostic laboratories to see if they could provide and send the sample.

My first attempt was at Quest Diagnostics.  They seemed knowledgeable that the test was a send out test, but that exceeded their capabilities, as Quest normally tests samples in their own labs. There was not a relationship established between Quest and Stanford that would allow Quest to send samples to Stanford.  Naomi was quite helpful, as I talked to her while at Quest and she was thinking about workarounds.  She even sent instructions for how Quest could get a one-time approval for this test. But that would need to be handled by a national account rep, not the local location, so unfortunately, that solution would fit my time schedule.  

My next stop was at Labcorp.  The technician there didn’t seem to understand what I was asking for.  She looked at the order, made a few calls and then drew a sample.  I was skeptical that the sample would be sent to Stanford since she didn’t even take the address.  The technician said she drew exactly what was on the order, but I had my doubts. I called Naomi and told her what Labcorp had told me.  Naomi asked for the number to the facility in order to call them.  A few minutes later, Naomi called me back and confirmed that Labcorp was not going to send that sample to Stanford.  Then she offered to call her contacts at Rush (another local Chicago hospital) to see if they could draw it as a send out sample.  Naomi had done training in Chicago, so she was familiar with the city and was offering her personal connections.   

Monday ended without a valid sample.  I contacted Dr. Tan at Northwestern Medicine, and he also got back right away that he might be able to get the labs drawn at NM.  But I needed something right away, so I went to Sarah’s practice Tuesday morning and had the sample drawn there.  She packed and labeled the sample, which I then took to FedEx myself to send, a few hours before catching my flight to Houston.  Hopefully everything will go smoothly and I can get a valid EBV NPC PCR test performed at Stanford’s lab, using the same methodology as the test in Singapore. This will probably be the most useful test in terms of how it’ll impact post-SBRT treatment decisions.

This little journey helped to reinforce at notion that Dr. Chua mentioned - that my care is now a collective effort. I am fortunate that I’m still able to reach out and get prompt responses from Dr. Tan and Dr. Colevas. They and their team’s (especially Naomi) willingness to remain involved in the case, even though I’m not actively getting treated by them, is reassuring.

Treatment starts Wednesday, 16 August and goes on for about a week. I’m hoping it goes well and I get through the SBRT treatments with minimal side effects as expected. After all, I’ve set myself a goal to gain at least 4 lbs while in Houston. I’ll plan to provide more periodic posts during this treatment time.

• Oral oncology: get fitted for radiation stent and fluoride trays

• Dr. Hanna (surgical oncology): catch up visit, as he had been my care coordinator

• Dr. Phan (medical oncology): discuss plan and expectations

• Imaging: a total of 4 scans, including making a new mask with a CT scan, then PET, CT and MRI planning scans

Tuesday Appointments

The trip started on Tuesday morning with a 2:45am wake up call, as I had to catch a 5am flight to make a 9am oral oncology appointment. The purpose was identical to the purpose of the visits I had in August last year, when we considered consolidating SBRT treatment. Once again, they made a new radiation stent and took impressions to make fluoride trays. MDACC wants me take more precaution with my mouth care. That is, instead of the high fluoride toothpaste (1.1%), they want me to use fluoride trays for the rest of my life. In other words, they want my mouth to have 10 minutes covered in fluoride instead of just 2 minutes brushing with the toothpaste.

One interesting thing that the team noted is that my saliva post-radiation (from 2018) isn’t “real.” Since my salivary glands were damaged, what I produce now is not the same as what I produced before. Thus, the saliva doesn’t clean my mouth the way it used it. I do notice that effect. Not only do I have to drink more liquid to eat certain foods, but even after eating, there is more stuck on my teeth and gums. So I can understand why I need to take extra steps to prevent long term issues.

The visit to Dr. Hanna and his team was quite useful in validating our decision. He agreed that SBRT (vs. the hyperfractionated RT) offered a higher probability of long-term control and lower toxicities, especially since my tumor is small. He made an interesting analogy - if we can kill the tumor with a “smart bullet,” then there would be no need to go “nuclear,” with all the collateral damage.

In addition, he elaborated on why I am not a candidate for surgery. While his assessment was a disappointment when we first heard it, the appointment reassured us, particularly as he and Dr. Gopal had the same rationale. That is, if surgery cannot achieve negative margins, then any post-surgery radiation is at a higher risk. He made a point that with surgery, they would be scarring and there would be a lot of tissue removed. That tissue would be replaced with a protective flap from tissue or fascia from my cheek or thigh. However, while that flap would offer some protection to my carotid artery, it would be much less protective than the tissue that’s currently there.

We also talked about post-SBRT considerations. In general, Dr. Hanna emphasized that the treatment plan would be determined based on a number of test results, not just a single test. If they all point in the same direction, then the confidence of how the tumor responded to SBRT increases. For example, if the MRI shows no discernible tumor, a PET scan shows no activity and there is no EBV or ctDNA (circulating tumor DNA), then we can feel confident the SBRT killed the tumor completely. On the other hand, if an MRI still shows a growing tumor, PET scan shows activity and there are rising EBV or ctDNA levels, then that would indicate the tumor is progressing. In combination, the tests can provide a more accurate reflection of the situation than a single test.

Finally, we talked about care coordination. While Dr. Hanna was my initial primary point of contact, he said that once I start active treatment, the treating doctor - Dr. Phan in this case - becomes the “quarterback” of the care. But the entire team is still involved, so that’s good to hear. I think this is an issue that I’ll still need to clear up, as both Dr. Phan (radiation) and Dr. Gillison (medical) will likely be involved.

My appointments finished by early afternoon, so I had a little bit of time to myself. I ended up having lunch at Kim Son, a Vietnamese restaurant known for its buffet. However, I didn’t realize that only one of their locations has the buffet, and where I went was not it. I ordered some dim sum dumplings and a shaking beef dish. Not for the first time, my hunger got the better of my sense, and I dived into the steaming dumpling. Enough to burn the roof of my mouth quite badly, so I couldn't enjoy the rest of my eating as much as I normally would. After that, I wanted to get ice cream. I found a place called Rocambolesc, a gelato shop started by Jordi Roca, of El Cellar de Can Roca in Girona, Spain. That has been named the Best Restaurant in the World (2013 and 2015), so I figured the gelato would be interesting. The gelato flavors were fairly standard and it comes with three toppings. I’m glad I got it - it was solid but nothing mind blowing. For dinner, I met a friend at Hugo’s, a classic Houston Mexican restaurant. It was very good but I wish my mouth was in better condition to enjoy more of the acidic foods and tortillas (which were a bit dry for me). The lamb barbacoa was excellent.

These are the steaming hot dumplings that burned my mouth

Mango and chocolate gelato topped with strawberry tapioca, cacao nibs and cake

Lamb barbacoa roasted in agave skin

Wednesday Appointments

On Wednesday, I had a quick return visit with oral oncology to pick up my stent. I appreciate Dr. Aponte-Wesson’s positive and upbeat demeanor. She reassures me that my teeth look good and I’ll be able to get through treatment. She also sympathized with my burned mouth and tongue from the previous day’s eating.

The visit with Dr. Phan was productive and efficient. We were able to address all of my questions in ~15 min. The main question was the course of treatment. We had previously discussed a plan of 45 Gr total - 5 treatments of 9 Gr each (vs. the 36 Gr total - 6x6Gr that Dr. Chua had mentioned). Preliminarily, Dr. Phan thinks my treatment will be 36 Gr total, but 4x9Gr. He said that the 9 Gr vs. 6 Gr intensity should provide more durable control. So that is a little shorter than I expected and with better expected results. When I asked about the control rates, he thinks I should have 75%+ chance of long-term control (i.e. being cancer free after 5 years).

In terms of the treatment itself, each radiation session only lasts 7 minutes but the time on the table is 15-20 minutes. This is to ensure that I am positioned properly and they do the pre-scans to make sure the radiation is hitting the exact targets with the intended amounts. There are steep drop offs in radiation in order to dose paint the targets and minimize the risk to critical structures. Another issue he brought up is to avoid “hotspots” and ensure dose homogeneity. It sounds like they have developed techniques to ensure maximal effectiveness while minimizing risk.

Dr. Phan reiterated that I should not have much side effects during the treatment week. I might have a little bit of swelling and some headaches, but otherwise I should be fine. I should be able to eat and drink normally. The risk is ulceration 3-9 months after SBRT. Since I’ve already had radiation to the area, the “crater” left behind SBRT may not heal properly. The symptoms of ulceration may include painful sores, more discharge (snot), and infection. They will monitor this with scans and other means. Hopefully I can avoid the near and long-term toxicities.

With respect to SBRT and immunotherapy, I’ll continue with the pembro infusion. Dr. Phan mentioned that there is research looking at whether radiation re-sensitizes IO. One aspect of the hypothesis is that the radiation kills cells and releases the tumor antigens which the IO drugs can learn to attack. That sounds promising, especially since it doesn’t seem like IO worsens any side effects of radiation.

After my meeting with Dr. Phan, the rest of Wednesday was spent on scans. I was pleasantly surprised that all of them ran on schedule (even ahead). Not only that, but I was able to do the scans under the mask and with a stent without much trouble. When I had done this last August, it was quite challenging. I think that is because i) I was a little stuffed up then and didn’t have clear nasal passages and ii) the stent now fits better. This new one fits much better and I can wear it more comfortably for longer periods.

The first part of the process is to make my new mask. This is actually my fourth(!) radiation mask. It’s a little odd to have that much experience getting mask made and not really a “skill” you should desire. The first mark was one we used in 2018. The second was a mask made at Northwestern Medicine in March 2022 when we weren’t sure what the course of treatment would be. The third was the one from MDACC in August 2022 for consolidating treatment. So this is the fourth. I assume the unused masks are destroyed. Otherwise, having my exact facial contours on a mask that I am not in possession of would be disturbing…

Since my scans were in other MDACC facilities (different from where the mask was made), I had to carry it with me. As I was leaving the main building, I had a very nice and positive interaction with another patient. He was just coming out of radiation and seemed to be in good spirits. He asked me where I was in my treatment, and I told him I was about to start. He told me he was nearing the end of his treatment and if he lost more weight, he might need a feeding tube. But he looked healthy. Even though it was just a brief interaction, it does feel like we shared a connection - I don’t know too many others who’ve had head & neck radiation - and tried to provide strength to each other. These are not easy treatments to endure, so it’s nice to share a moment with someone else who is undergoing similar treatments. Wishing he has a successful end to his treatment.

I was a little apprehensive getting the rest of the scans. I went to “CABI” (Center for Advanced Biomedical Imaging) for my PET and CT scans. Since it was scheduled for 11:30am and there is a strict fasting requirement, I only had water that morning (not even tea). So I was a little hungry. In addition, I had a bit of dry mouth that morning (may be because of the flight and/or hotel allergies) but they didn’t want to me use any mouthwash or mints for it, since the sugar may interfere with the FDG tracer used for the PET scan. I was concerned that with my mouth being dry and a stent in place, the top of mouth would continue to get drier and I’d cough or move during the scan. Fortunately, I managed to get through the CT scan (~6 min) and then the PET scan (~10 min with the mask, 30 min total) without many issues.

With PET and MRI, they make change into clothes with no metal (i.e. zippers in my shorts). These hospital pants seem to be made for someone with a 40”+ waist. They are quite comfortable, though.

My fourth mask

Location of my MRI scan

I need to keep this in place (under a mask) for 20 minutes during treatment

The two scans were scheduled for 11:30am and 2pm, with my MRI at 3pm. But since I finished both by 1:40pm, I was able to get something good to eat. I was able to drive back to Bellaire for a return visit Blood Bros BBQ, a Vietnamese-influenced BBQ spot. I got an order to eat there - brisket, jalapeño cheddar sausage, gochujang ribs and sweet corn - and some to bring back to Chicago - brisket fried rice and brisket chow fun. I’m glad that the place still has smoked meats available at that time - other places tend to sell out by 2pm or so. I did see them packing up before I finished eating, so I got there just in the nick of time. I was eating BBQ with a IV in my right elbow, as they still needed it for my last scan.

Sides - sweet corn, brisket chow fun with gai lan, brisket fried rice

Smoked meats - gochujang ribs, jalapeno cheddar sausage, brisket

My final scan was the planning MRI. Even after eating and taking a xylitol mouthwash was to try to relieve my dry mouth, I was still a little fearful, as this would be a longer scan than the CT and PET. My previous MRIs have been about 45 minutes. But those are with my head immobilized but not under a mask and with a stent in place. I was so relieved to hear that the planning MRI is only 20 minutes long. That is about the length of the time under a mask for treatment, so if I could handle this MRI, then I should manage the treatment time fairly well. When I’m getting scanned, I usually just try to close my eyes and meditate. It’s worked well in the past and it worked this time too. So now I feel that with only 4 treatments of ~15-20 minutes each, I can do this. Much more manageable than my previous 35 fractions under a mask.

This MRI finished on time as well. I was able to move up my flight from a 10pm departure to a 7:20pm departure. In addition, I was able to order and pick up food from Street to Kitchen, a Thai restaurant located in a gas station that won the James Beard Award for Best Restaurant: Southwest in 2023. I ordered three items: masamam curry, Thai basil beef (mild) and drunken noodles (medium spicy). Between this and Blood Bros BBQ, I was bringing back a nice sampling of food back to Chicago. However, when I was going through TSA, the agent told me the masamam curry was a liquid, so I couldn’t bring it through screening. Of course, I couldn’t let it go to waste, so I took my bags off the screening belt and plopped myself down on a nearby bench. I ended up eating the entire bowl of masamam curry by myself. Not exactly the setting I was hoping for, but it still tasted great nonetheless. The other dishes did make it back to Chicago. I’m also glad I didn’t order the “Thai Spicy” level, as the medium was spicy enough that I had to eat it while drinking a cup of milk to relieve the spice level.

Masamam Curry - eaten at the TSA check point in airport

It was over 6 lbs worth of tasty goodness

With my schedule set and my treatment planning done, I can now focus on the logistics of getting treatment at MDACC. The total time for SBRT will be only 8-10 days for the 4 radiation treatments. That is surely better than the 10 weeks of radiation that UCM had proposed initially (including 25 in-patient hospital days and 50 radiation treatments).

Even while I’m getting treated, my time at MDACC may be <4 hours of radiation treatment time (assuming no long waits) and a few other appointments. So I’m hoping I’ll have enough time and energy to explore the food scene (my list has over 60 places to try) and visit parts of Houston that I haven’t been to before. We’ve explored the area around the Texas Medical Center as well as nearby neighborhoods such as Montrose and The Heights and parts of Asiatown (Bellaire, Katy). A trip to the Space Center Houston (NASA Johnson Space Center) or even Galveston might be in the cards. I’m just hoping the radiation doesn’t take too much out of me. I want to eat as much as I desire and have enough energy to visit new attractions and return to ones we’ve enjoyed before, such as the Rothko Chapel and Menil Collection.

Thanks again for your support. I’m hoping to provide more regular updates as we continue this fight.

I feel fortunate that I’ve had access to the best care team in the world, having consulted with doctors in Chicago, Houston, Singapore (all in person) and Taiwan (remotely). Aiday and I have had in-depth discussions with distinguished doctors, who have provided us with detailed assessments of the issues and the risk and benefits of the potential treatment options. At this point, we are probably some of the most-informed NPC patients in the world. We feel comfortable with our treatment plan, as this is the consensus of multiple centers.

In summary, the latest MRI in May 2023 showed a more prominent (more defined) tumor, and a PET scan confirmed metabolic activity. In other words, the tumor seemed to be growing / progressing. A biopsy later confirmed the growth was cancerous. The doctors describe the tumor as localized and slow growing, with the immunotherapy regiment likely limiting the growth rate and spread. The return of cancer was asymptomatic. That is, I didn’t notice any changes to my energy and I didn’t feel any pain (unlike the first recurrence). I felt as good as I did 3 and 6 months ago, when the scans were stable. Things definitely could be worse.

The plan is to undergo a form of radiation called SBRT (stereotactic body radiation therapy), a highly targeted and intense radiation course. The SBRT plan seems to be offer only advantages over other treatments, so we didn’t have to make tradeoffs between potential effectiveness vs. quality of life vs. costs / logistics. SBRT is administered every other day for 5-6 treatments in total, i.e. 2 weeks of treatment. The doctors have seen a 70-80% control rate (no return of the tumor) with this approach, and hopefully my factors will put me on the higher end of this range or better. We will do this at MD Anderson Cancer Center in Houston. I’ve always dreamed of living in Texas in the midst of August heat, and now I have my chance.

This is considered third-line treatment for the cancer. Obviously, I wish I didn’t have to go through first line treatment (chemo-RT in 2018), much less second line treatment (systemic chemo-immuno in 2022). Since my cancer has turned out to be quite an adversary, I’m glad that I have multiple viable treatment options for this round and that I’m still in a good condition to receive them. And it sounds like there are still some options should I need them in the future (let’s hope it doesn’t return again).

We’ve had a rollercoaster of emotions over the past two months, with some challenging times offset by more optimistic and hopeful times. Especially during the first few weeks, we changed our opinion about which treatment would be best for us, which changed our mood and outlook. Having completed so many consultations, we are in a good and optimistic place now and am on an upward trajectory. We are ready to attack this tumor and finally rid it from my body. After all, the goal is to live a joyful life with Aiday, Charles and the rest of my family and friends.

Once again this is a long and detailed post (nearly 8000 words) in part to provide a reference document for myself. It’s sort of a journal and has a lot of medical detail. I’ll start with the timeline, a summary of the treatment options and then a chronological review of the consultations with the doctors and how we felt along the way.

N.B. I do plan to post (with pictures) about travel to Istanbul and Singapore, two great destinations. I’ll get those out in the next few weeks.

Timeline

• 8 May 2023: scans - MRI Head/Neck, CT Chest. Part of regular monitoring process

• 10 May 2023: meet Dr. Rosenberg (my UCM medical oncology) to discuss scan results. Things look “relatively stable” on an initial read

• 17 May 2023: call from Dr. Rosenberg that the radiologist saw a more prominent tumor when compared to 15 Oct 2022 MRI

• 25 May 2023: PET scan to assess metabolic activity, i.e. whether it’s active

• 2 June 2023: meet with Dr. Rosenberg. PET scan confirmed “suspicious” tumor. Discussed three potential treatment plans: a) surgery, b) re-irradiation, c) management with trials. The first two have curative intent

• 7 June 2023: meet with Dr. Juloori (UCM radiation oncology) and his resident for 2.5 hours. Discussed the re-RT protocol and its risks

• 8 June 2023: meet with Dr. Roxbury (ENT) and Dr. Polster (neurosurgeon) for 1.5 hours. Discussed the procedure, feasibility, and risks around endoscopic nasopharyngectomy

• 21 June 2023: second opinions at MD Anderson in Houston. Meet with Dr. Phan (radiation oncology) and Dr. Gillison (medical oncology). Dr. Phan proposed an SBRT approach. Dr. Gillison recommended a biopsy to confirm the cancer. If confirmed, then consider SBRT; otherwise manage with IO only

• 23 June 2023: immunotherapy infusion at UCM - moved up by a week due to the pending trip

• 25 June 2023: fly to Singapore. This trip, planned to introduce Aiday and Charles to Singapore and relatives, was originally booked for mid-August. But we moved it up (at considerable cost!) for a number of reasons, including getting medical opinions

• 30 June 2023: meet with Dr. Melvin Chua (radiation oncology) at National Cancer Center in Singapore

• 3 July 2023: meet with Dr. Gopal Iyer (head & neck surgeon) and Dr. Chua. Dr. Gopal performed a biopsy in-office

• 7 July 2023: meet with Dr. Chua again. He provided a recommendation letter that reflected the consensus between him and Dr. Gopal for how to proceed. This lined up well with MDACC’s approach

• 9 July 2023: return to Chicago from Singapore

• 12 July 2023: test positive for Covid. I had avoided getting Covid for 3.5 years but somehow managed to get it just before the plan to start treatment planning in Houston

Summary of the Treatment Options

• Surgery: this is the preferred approach, if feasible. In fact, we spent considerable time with the surgeons at UCM to understand the procedure, the recovery process and the long-term prospects

  • Pros: less severe long-term side effects

  • Issues: proximity to carotid artery makes getting a negative margin (i.e. confidence that the entire tumor can be removed) more challenging. Surgery would tissue that would need to be replaced with fascia from my cheek or thigh

  • Conclusion: risks not worth the benefits. Little chance of getting negative margins on the gross tumor, much less microscopic cancer cells. This was the conclusion of MDACC (Dr. Hanna), NCC (Dr. Gopal) and UCM (Dr. Roxbury and Dr. Polster)

• Re-irradiation, hyper-fractionated with phase 1 drug trial: this is a UCM protocol that we discussed with Dr. Rosenberg and Dr. Juloori. This is a long treatment plan, administered over the course of 10 weeks - 5 cycles with one week in-patient (in hospital) and one week recovery. The radiation protocol would follow UCM’s approach - hyper-fractionated RT, with 75 Gr total over 50 fractions (1.5 Gr/fraction). The RT would be sensitized by 4 drugs, which some of which would be administered continuously while I’m in-patient

  • Pros: this is sort of an “everything but the kitchen sink” approach. Hyper-fractionated RT should have less side effects than standard radiation

  • Issues: late term side effects, including carotid blowout (fatal, <10% chance), loss of salivary glands, taste changes, etc. Treatment duration is much longer than other plans. Family and I would need more support, especially during in-patient weeks. Treatment itself is tough - would require painkillers and likely result in weight loss

  • Conclusion: too aggressive an approach, i.e. unnecessary / overkill for my case. SBRT offers higher prospects of control and less severe toxicities

• Re-irradiation, SBRT: this is a targeted form of radiation that uses a much higher per treatment dosage - 6-9 Gr per treatment

  • Pros: higher change of control (70-80%, vs. 40-60% in hyper-fractionated). Less severe expected side effects expected

  • Issues: need to consider the cumulative and per treatment dosage. Some discussion around 6x6 Gr (Asia) vs. the 5x9 Gr (MDACC) approach

  • Conclusion: this is the approach we will pursue. This was the approach that MDACC (Dr. Phan), NCC (Dr. Chua, Dr. Gopal) and Dr Lin (Taiwan) recommend

• Immunotherapy-only and/or drug trials: this is more of a management / palliative approach

  • Pros: no change to current feeling

  • Issues: does not offer curative approach

  • Conclusion: still have curative options, so no need to go on trials

Note: none of the doctors like the use the term “cure.” While the treatments have “curative intent,” whether that’s is achieved won’t be known for 5 years, after which the chance the caner comes back is greatly reduced. That is, even if the cancer appears to be in remission post-treatment, I won’t be considered “cured” until 5 years later.

Journal / Consultation to Consultation Notes

The journey to get to where we are currently was filled with a lot of ups and downs. The early part of May was great. Aiday and I took a 5-day trip to Istanbul and loved it. We returned on 3 May and then had the scans a few days later. I always have some anxiety getting the result of the scans and and thought this was a routine one. I didn’t have any new concerns or pain. When Dr. Rosenberg said the scans looked “relatively stable” on 10 May, we felt relieved. At least for the next three months (I’ve been living scan-to-scan), recurrence of cancer wouldn’t be at the forefront of my thoughts.

From that peak, things took a turn. In addition to the cancer recurrence, we’ve also been dealing with additional stressors, including temporary displacement from our condo and the wind down of my firm. I found out on Monday, 15 May that my firm would wind down by the end of the week. Thursday that week is when I got the call that the radiologist noticed the more prominent tumor. During that week, we also had to find and secure a second temporary housing location and move. (In the end, we had to move to three temporary housing locations while our condo was undergoing repair / remodel prompted by water damage from a neighbor.) So that was a bit of a challenging week.

After the initial shock (and mental denial) of the return of cancer, I went to get a PET scan on 25 May, 8 days after we were told of the potential return. That was the Thursday before Memorial Day. I had hoped to get results before the weekend, but we didn’t find out the results on the following Friday, 2 June. There was about 2 weeks of anxiety of not really knowing whether or not the cancer had returned. In this case, the anxiety of not knowing for certain probably felt as bad as knowing one way or the other. Each slight sensation in my head or change in my hearing made me wonder whether it was a sign that the cancer was back and growing and how fast.

Images from pre-treatment (left, March 2022), post-systemic treatment (center, October 2022), and most recent (right, May 2023). The tumor shrank from 27x39mm to 8x13mm, though it was “ill-defined” after systemic treatment

Most recent image from May 2023 shows smaller and less intense activity when compared to March 2022

University of Chicago Medicine (UCM) Opinions

In terms of the treatment plan, we’ve changed what we thought we needed to do several times, accompanied by a change in emotion. Our first meeting with Dr. Rosenberg on 2 June was productive. I was sort of braced for the news, as I didn’t carry much hope that the tumor was non-cancerous. We were encouraged by the curative intent of the treatment options, as I had feared something worse. In addition, he mentioned the tumor was slow growing and not likely to metastasize in other parts of my body. At that point, we were hopeful that surgery would be an option, as that would be the most tolerable for me. After that meeting, Aiday and I both had the same reaction: “we’ll get through this.” We were glad that there were curative intent treatments available. We were all pleased that there was time to get additional opinions and travel before starting treatment.

The following week, we had meetings with the UCM radiation oncologists (2.5 hours) and the UCM surgeons (1.5 hours). I am very appreciative that they allowed me to have such in-depth discussions to go over all the questions we had.

The UCM hyper-fractionated RT with drug sensitizers is quite an intense and comprehensive approach. This plan includes a phase 1 drug trial, of which the UCM oncologists are the principal investigators. There are two elements to this treatment: a) radiation protocol and b) cancer drugs. Overall, the doctors believe that I’m as good a candidate for re-RT and that I could tolerate it relatively well.

In terms of the radiation protocol, this would be different to the radiation I received in 2018, both in terms of radiation target and the delivery of the radiation. In this round, the radiation would be more targeted to the tumor itself and would spare a lot of the surrounding structures, including my neck and throat. Also, because the recurrent tumor is in a slightly different location than the original tumor, the doctors believed that I wouldn’t have as severe impacts to my salivary glands or taste. They expected me to handle the RT well.

The delivery of the radiation would still be photon IMRT, but in hyper-fractionated doses. The “standard” radiation protocol in 2018 was 70 Gr total over 35 fractions, or 2 Gr / each. That was given 1x/day for 7 weeks. A study published in The Lancet in 2023 showed that "hyper-fractionated” radiation approach had similar outcomes but fewer late stage complications for treatment of recurrent NPC (exactly my condition). That is, the side effects were both fewer and less severe than in standard fractionation. (Interestingly, one debate in the treatment of this cancer is whether patients die as a result of the treatment effects or the cancer, so this study was trying to reduce the former.) In this context, hyper-fractionated means giving radiation 2x / day (6 hours apart) so that each fraction would be lower dosage. In the research study, the protocol was 65 Gr over 54 fractions, or 1.2 Gr / fraction. The UCM protocol would be slightly different, with a higher 1.5 Gr / fraction dosage but also having a week off between sets of 10 radiation sessions. The UCM team said that this is a protocol they’ve used for decades and were able to achieve around a 50% control rate, i.e. cancer doesn’t return within 5 years (at that point it’s unlikely to return). In fact, most of the cancer returns within the first 2 years post-treatment, so if I can make it 2 years past treatment without a return of cancer, the chances are good that it’s not coming back.

We spent a lot of time with Dr. Juloori and Dr. Katipally (resident) discussing the risks of this approach. (Dr. Haraf, who we had previously seen at UCM is retiring.) Going through radiation again was something I had feared, especially when I found out about the first recurrence. Radiation was not easy for us. My mouth was in constant pain. I love to eat, but towards the end of the radiation, I was reduced to Benecalorie or Boost shakes as my main source of calories. I ended up losing around 35-40 pounds and had to get fluids through my port. So to hear them say that this treatment would be much more tolerable was a relief. But I could lose another 10-20% of my saliva, which would make the dry mouth worse.

In addition to the eating issues, we also discussed other concerns of mine, specifically dosage, carotid involvement, and survival rates. The cumulative dosage would be high: 70 Gr in 2018 + 75 Gr in this plan = 145 Gr, which is higher than the 120 Gr that guidelines mention as safe, particularly for the carotid. Dr. Juloori said that he would “dose paint” the radiation, such that the carotid would receive much less radiation than the tumor. Somewhat morbidly, we discussed what happens in a carotid blowout, which is estimated to occur <10% in the hyper-fractionated protocol. That is a “Grade 5” toxicity, i.e. death. For 5-year survival rates, the studies show ~50% survival rate, but my factors (age, health, chemo response, IO response, local recurrent only) are favorable.

The drug part of the treatment plan was the phase 1 trial in which the medical oncologists at UCM (including Dr, Rosenberg) are the principal investigators. This is a trial specific to UCM and is not part of a larger trial. With this trial, I’d need to be on 4 different drugs: i) tislelizumab, an immunotherapy drug developed in China; ii) pamiparib, a PARP inhibitor; iii) 5-FU, a chemo drug; iv) hydroxyurea. The study is phase 1 because they are studying safe drug doses. Neither tislelizumab nor pamiparib are FDA-approved. However, Dr. Rosenberg assured me that these drugs have been around for a while and used safely in other contexts. All of these drugs would be sensitizers to radiation, i.e. the intent is to make the radiation more effective. The reason for the in-patient hospitalization is that the 5-FU would be given continuously over 5 days, through a port that would need to be implanted. This is a drug that I had taken as part of my adjuvant chemo regiment (post radiation) in 2018, and I had some rough side effects. So much that I needed to reduce the dosage. So the prospect of going back on this drug, along with three others, was not something I was looking forward to. Plus, having to stay in hospital for a week at a time would be a challenge. As much as I’d love to catch up on streaming shows or learn how to code better, it’d be hard to be away from Aiday and Charles. I also didn’t want Charles to see me in a weakened state and hooked up to various drugs / fluids. I’m also sure that UCM hospital meals would not be something I crave.

Overall, my assessment after the meeting with Dr. Rosenberg, Dr. Juloori and his team was that this would be a tough treatment (I’d likely be on heavy painkillers starting in cycle 1 or 2). They advised me that I shouldn’t expect to be able to do too much physically even during the off weeks. It would also most likely result in a decreased quality of life due to the radiation side effects. But if a few months of pain could result in years of life, it’s something we’d be willing to do and get through it.

The next day (8 June), we met with Dr. Roxbury and Dr. Polster for about 90 minutes in total. They said that if surgery wasn’t an option, we wouldn’t be discussing it, so that gave us some hope that surgical resection could be feasible. The doctors provided us with their plan on how they would operate and the risks involved. It would be an endoscopic surgery with only small incisions, so no reconstructive surgery required. It would be a 10-12 hour procedure and I’d be out (i.e. under general anesthesia) the entire time. As with all surgeries in the head & neck, it’d be considered high risk and complicated.

I appreciated their candid approach. They said there was a chance of getting negative margin on the gross tumor but it would be nearly impossible to remove all the microscopic cells. They also noted that in balancing the oncological control vs. risks, they would be more conservative. That is, they wouldn’t take an added risk as I have other viable options. They described all the risks, which were many. That even includes the risk of stroke during a balloon occlusion test that they’d need to do just to see if I could have surgery.

During the meeting, they told me that the tumor board didn’t have a strong recommendation in my case and that their goal was to provide me with all the information needed so that I could make the decision. I also appreciated the doctors telling me that no matter what I end up doing, i) the care team at UCM would be supportive and ii) I should commit to the decision and not second guess myself.

We left the meeting feeling that surgery might be a possibility. We felt we were in good hands with Dr. Roxbury and Dr. Polster. This also coincided with Dr. Lin emailing me that surgery is the best option if feasible. For about a week, we thought that surgery could be the likely path and were getting comfortable with that. We were feeling a little relieved that the long course radiation was not the only option - we were on an upswing of emotion.

However, about a week after our consultations, Dr. Rosenberg called and told me that the tumor board had further discussions. UCM’s recommendation was to do the re-irradiation with the phase 1 trial. While surgery was feasible, the chances of achieving negative margins was low. Which would mean I would have to get RT again anyway, so why add in the risks of surgery if both surgery and RT would be required? That call was a little deflating, as the prospects of the long course radiation was not that appealing.

MD Anderson Cancer Center (MDACC) Opinions

As we had done in March 2022 and August 2022, we sought the opinion of the specialists at MDACC. I sent them messages and discs with my latest images, and I was able to schedule appointments on 18 June with Dr. Phan (radiation oncology) and Dr. Gillison (medical oncology). Dr. Hanna, the head & neck surgeon, was not available. He had reviewed the images and also stated that I was not a surgical candidate. That was both slightly deflating but a little re-assuring in the sense that he agreed with UCM’s tumor board about the risk of surgery.

My first consultation at MDACC was with Dr. Phan, the radiation oncologist. In August 2022, we had discussed post-systemic radiation treatment options with him, but we decided against it at that time. With the recurrence, he recommended an SBRT course of 5 treatments with a maximum of 9 Gr per treatment, given every other day. He said SBRT offered several advantages over both standard and hyper-fractionated radiation, including the following:

• Novel radiation approach: since my tumor has shown to be RT-resistant, SBRT is a different form of radiation that may (finally) kill the cells. Standard and hyper-fractionated RT would likely result in the same outcome, i.e. the eventual return of cancer as the cancer is hardy. He described my cancer as “laughing” at attempts to kill it with radiation. The recurrence was in the epicenter of the radiation field, i.e. the location that received maximum radiation

• Higher control and survival rates: he’s achieving 75-80% rates using SBRT. The hyper-fractionated approach studies were showing 40-50% survival rates

• Less severe side effects, both acute and long term: this would result in better quality of life

We spent a bit of time discussing the SBRT vs. hyper-fractionated approach. While the study was a “game changer” with respect to UCM’s recommendation, Dr. Phan noted a few issues. He said the study was almost set up to give the conclusions it did (e.g. the total dosage was not the same between the standard vs hyper-fractionated groups). In addition, he said that while the study was published in 2023, the patient screening period ended in 2019. Since my case is complicated and all the treatments options are “frontier,” it’s best to look at a medical center’s experience and outcomes. Dr. Phan noted that his PFS (progression free survival) and OS (overall survival) are much higher than the study’s. The issue is that he hasn’t published the data and his sample set is still low - around 30 cases of re-RT with SBRT. (The volume of cases in the US is much lower than in Asia, where most the research studies are done.) He also said he expected the carotid blowout risk to be <3%, an order of magnitude better than the <10% risk in UCM’s hyper-fractionated protocol. Dr. Phan is conducting a trial (“SOAR”) evaluating SBRT vs. standard IMRT on inoperable head & neck cancers. I wouldn’t be on the trial since I definitely need to do SBRT and can’t take a chance of getting randomized into the IMRT arm.

In terms of the side effects, Dr. Phan said that the treatment itself should not result in complications. That is, he expects that during the course of the two week treatment (Mon, Wed, Fri, Mon, Wed), I should not have any change to eating or tasting. In fact, I could fly back and return home immediately after the last treatment. The side effects would most likely have an onset 3-9 months post-treatment and come in the form of ulceration of the pharynx. This could be quite painful but he said there could be a surgery to resolve that. The rate of this complication and the resolution of it are items I’d like to further discuss with him.

Dr. Phan made a few other notable points. He said that the SBRT could be quite effective to control the local tumor but that I may need chemo post-treatment to reduce the risk of distant spread. He also made an interesting point about surgery vs RT - the adverse effects of surgery are almost guaranteed (i.e. the removal of all the tissue / fascia and its effects) while the RT side effects are more probabilistic - I could develop them or I might not. With respect to the type of radiation, Dr. Phan said that in my case, he would use photon vs. protons - protons are “dirtier” and photons are more controllable, so photon has the advantages in this case. Finally, he told me that the muscle spasms I’ve felt on the right side of my neck are almost certainly a result of the 2018 radiation treatment. It’s been an issue for a while now, but seems to be manageable.

My mood after meeting with Dr. Phan definitely improved. He offered a treatment plan that had higher success probability of control with less side effects. I was beginning to think that there were options with curative intent besides what UCM had proposed.

My other meeting at MDACC was with Dr. Gillison, a medical oncologist (like Dr. Rosenberg). She offered me the strongest recommendation in terms of treatment plan. First, she was very pleased with the control of the tumor through the systemic treatment and the maintenance IO. Her first question to me was how I was sure the cancer was recurrent. She interpreted the PET scan in a different way - she noted that the SUVmax (metabolic activity) was lower in May 2023 vs. March 2022 and that the area was smaller. So it seemed like the immunotherapy was doing its job. I’m not sure if she was able to review the MRI images, but she said that the tumor definition change between October 2022 (“ill-defined”) and May 2023 (measured at 8x13mm) that UCM radiologist noted could be an interpretation issue. I asked her to request a formal read by the MDACC radiologists.

In terms of the care plan, she recommended the status quo - continuing on pembrolizumab / Keytruda. The reason is that the IO drugs all attach to the PD-L1 inhibitor in different ways and if I were to change drugs, there’s no guarantee that the new drug would work better than the current one. There may also be a ramp up time in how the drugs train the body to attack the cancer cells.

She strongly recommended I get a biopsy of the tumor. After all, it isn’t cancerous, then there’d be no need to go through additional treatment. One comment she made stuck out in my mind - “after treatment, you’re never going to feel as good as you do today.”

If the biopsy confirmed the cancer, then she said she would consider the SBRT plan. She thought the UCM protocol (long course radiation with phase 1 drug trials) was “investigator enthusiasm” and that the plan was overkill. She was more emphatic against that plan (Dr. Phan said he wasn’t against it necessarily, but that it would likely result in lower quality of life). I found her quite assertive on this visit, whereas she seemed more equivocal in prior visits.

In the end, the trip to Houston was extremely productive. I was feeling a lot better, bordering on buoyant, about pursuing the SBRT plan and even allowed myself a glimmer of hope that a biopsy would result in a benign growth. The SBRT plan sounded a lot more tolerable, and with better outcomes, than the UCM plan.

Not only that, but my one day trip to Houston included an “upgrade” to a red Ford Mustang and a trip to Truth BBQ for lunch. I was hoping to pick up some dinner (even had the pickup order from the restaurant that won James Beard this year ready to send) to bring back to Chicago before my return flight, but by the time I finished the appointments, I had to go straight to the airport and barely made my flight. I wish I could have tested the performance features of the Mustang, but hard to do so in rush hour traffic.

Yes, I’m a middle-aged man wearing progressive glasses with Transitions lenses driving a red sports car

A nice lunch before meeting with the doctors at MD Anderson. I did order more ribs, mac & cheese, and chocolate cake, so this is just a part of my lunch. Ordering ahead for pick up saved me a lot of time

National Cancer Center Singapore Opinions

We had planned to take a trip to Singapore in August to introduce Aiday and Charles to the country and my family. Given the recurrence of cancer, and the expected impact the UCM radiation plan would have on my ability to eat and taste, we decided to pull the trip forward and left just a few days after returning from Houston. (That week, we moved back to our condo on Monday, went to Houston on Wednesday, went to a wedding Friday night, unpacked boxes and packed for our trip to Singapore before leaving on Sunday.) I didn’t know how long the recovery from the UCM radiation would take or how I’d be affected, so we figured to go while I still felt good and could enjoy all the flavors.

At the same time, we figured to seek the opinions of Dr. Melvin Chua and his colleagues at NCC. Dr. Chua had been introduced to my case previously by Dr. Bruce Tan, my ENT at Northwestern Medicine. Dr. Chua is a leading expert on NPC and has written highly-cited journal articles on its treatment. At the very least, he may tip the scales in favor of one treatment or another. We were able to set up appointments with him and Dr. Gopal Iyer, the chief head & neck surgical oncologist at NCC, during our trip. In total, we met with Dr. Chua three times and Dr. Gopal once.

I told my relatives in Singapore about my appointments. In particular, I was (pleasantly) surprised by the estimated expense as an overseas (i.e. non-Singaporean) patient - $130 each for an initial consult with two of the most senior (and internationally recognized) experts in their field. My relatives cautioned me that the visit may only be 15 minutes. So I made sure I was prepared with all the relevant history and my most pressing question in case that’s all the time we had. We got a lot more time that that - in total over 3 hours of consultation time.

The first meeting with Dr. Chua on Friday, 30 June, was quite encouraging. Similar to Dr. Gillison’s reaction, Dr. Chua also noted the “remarkable” response of the tumor to the treatments, comparing the March 2022 (pre-treatment) scans to the latest ones. He had an upbeat outlook on my prospects, noting that my tumor is among the 30% that is responsive to immunotherapy.

With respect to the treatment options, Dr. Chua is also of the opinion that the UCM approach was overkill, calling it “aggro.” There were at least two aspects of the protocol that gave him pause. First, he didn’t like the use of the PARB-inhibitor as he believes that had damaging effects on DNA. Second, the per treatment dose of 1.5 Gr/fraction is above his comfort level for hyper-fractionated RT - he prefers 1.1-1.2 Gr/fraction.

Dr. Chua also recommended the SBRT plan for the same reasons as Dr. Phan - it would be a novel approach to treating this cancer. The difference to Dr. Phan’s plan is that Dr. Chua likes a 36 Gr total dose, with 6 treatments at 6 Gr each. The exact SBRT protocol is still an outstanding issue.

Towards the end of the 90 minute visit (including giving my history to a more junior doctor), Dr. Chua scoped me. He said a numbing spray wasn’t necessary, which surprised me a little. In any case, he went right in and I barely felt a thing.

We discussed a wide range of topics during our consultation, including post-treatment management and other drugs combinations. We told him that we were scheduled to meet with Dr. Gopal the following Monday and Dr. Chua told us to come back earlier, as he’d discuss the case with his colleagues and provide further insight.

Aiday and I felt very good after that visit. Not only did we get to meet the esteemed doctor, but he showed a genuine interest in the case and provided us with a lot of insight. Furthermore, his approach neatly lined up with MDACC’s approach, so the treatment options seemed to be converging, albeit on a plan that was not discussed at UCM. If that was our only interaction with NCC / Dr. Chua, it was worth it. But it was the first of three consultations.

We went back to NCC for our scheduled appt with Dr. Gopal. It turned out to be a joint consultation with both Dr. Gopal and Dr. Chua. Dr. Gopal’s initial reaction was inline with Dr .Gillison and Dr. Chua - very pleased by the response. Those reinforcing comments gave us a lift. Dr. Gopal further confirmed that I’m not a surgical candidate for the same reasons - proximity to the carotid. Even though Dr. Chua had scoped me on Friday, Dr. Gopal did his own scope. He said he noticed something unusual, so he asked his team to get tools to do a biopsy. This time he used generous amounts of the numbing spray before he pulled tissue samples out with very fine forceps. Again, I didn’t feel a thing. With just his endoscope and forceps, he got valid biopsy samples. I had scheduled a biopsy under general anesthesia at UCM following our return from Singapore, but this in-office biopsy obviated the need for it (given the result).

I asked Dr. Gopal’s team what could explain the metabolic activity on the PET scan if it wasn't cancerous. They said that it could be dead tissue or inflammation. For a few days after the biopsy, we had hope that the cancer hadn't returned.

Dr. Gopal did give some outlines around his approach to the treatment plan. He said that since the cancer remains localized, there wouldn’t be a need to do whole body treatment, i.e. chemotherapy. He would prefer the targeted RT. We also discussed a dual-IO approach, as Dr Gopal was an author on a May 2023 study that tested using two different IO drugs in combination for treating recurrent NPC. He said that he wouldn’t recommend that for me at this time, as that approach is still experimental and the results were no better than the approved IO plan I am currently on.

Again, we left the consultation impressed by the doctors and optimistic. In fact, we probably allowed ourselves a bit more hope that the biopsy could be negative given that we now had explanations of alternative outcomes.

However, the biopsy and EBV blood tests came on Thursday, and they confirmed the return of cancer. Dr. Chua emailed me the results a day ahead of our last visit, where he wanted me to be his last patient on Friday afternoon, in part because he knew our consultation would be longest, so he didn’t want to hold up his other patients.

With respect to the biopsy, we asked whether there was anything unique or differentiated about the tumor. We thought that since NPC is more prevalent in Asia, the labs may have more familiarity or markers to identify. It turns out that NPC tumors in general are unremarkable and that was what they indicated to be the case with mine. That is, there is nothing “special” about it that could be targeted with specific drugs. With respect to the detectable, but not quantifiable, levels of EBV, the is still an outstanding issue. I want to get EBV tests at UCM and/or MDACC (pre-treatment) to see if the US tests are as sensitive as the one I had in Singapore. In looking at the results, the lower bound of the range for the US test is lower than the lower bound of the Asia tests (69 IU/ml vs. 35 IU/ml), but my test from Feb 2023 resulted in “No EBV DNA detected”. I want to ensure that the difference is because the tumor was not as active in Feb vs. the test is less sensitive in the US. The difference is important to determine post-treatment requirements. If I have detectable levels of EBV post-SBRT, that would mean microscopic cancer cells still remain and I’d have to pursue treatment to address that (likely including chemo). If there is not detectable levels of EBV, then I can be more confident that the SBRT would have killed all the cancer cells, both the gross tumor and microscopic cells.

Dr. Chua was quite generous with his time and knowledge. Before we discussed the treatment options, we actually had a discussion about probiotics and immunotherapy. I had sent him an email the day before as we came across some supplements that were claiming cancer benefits. He wrote back quickly and said probiotics could help (good thing he did, as I put took those costly cancer supplements out of my cart). In office, we continued the discussion and he recommended taking probiotics in general, as having a more diverse gut flora is shown to be beneficial. At this point though, there aren’t specific recommendations for which microbiomes or probiotics are more beneficial, but I imagine those studies will continue. But I will start taking moreprobiotics.

After that initial discussion, we reviewed three potential treatment plans going forward:

• Status quo: immunotherapy (IO) only with pembrolizumab

• IO + chemo: add a chemo drug, such as capecitabine

• Radiation therapy: specifically, SBRT, followed by IO

We concluded that the SBRT now was the best approach. The tumor is relatively small and may also be acquiring IO-resistance. It’s better to address it now than wait to see if IO can continue to control (and possibly shrink) the tumor. That was deemed low probability, and a larger tumor would require exponentially more radiation, so I’m in a good spot to do SBRT now and try to kill the cancer once and for all. Dr. Chua was kind enough to write a recommendation letter that included his contact details so that I could communicate his intentions without any misinterpretation / translation mistakes to other doctors.

Dr. Chua shared detailed plans on how the SBRT would work, using a patient’s previous treatment plan as an example. In fact, the case he discussed with us was a patient who’d had radiation there times - proton, followed by hyper-fractionated RT and finally SBRT. That patient’s cancer came back after the first two RT treatments but the SBRT seems to have put it in remission. That was another reassuring point, both the fact that patient could be given 3 RT and that SBRT seems to be controlling it.

We were shown images of how the 16 beams all target the treatment area, with the maximum intensity focused on the tumor and drop offs to spare critical structures. For SBRT, the issue driving the treatment plan is not so much the carotid but the mucosal involvement. His plan would try to minimize the risk of ulceration or necrosis of the tissue around my tumor.

Given the high intensity of the radiation, I wondered how they can be so targeted, particularly as I’m pretty sure I can’t stay completely motionless for the duration of the radiation (around 20 minutes per treatment). Dr. Chua reassured me that the SBRT has ~0.3mm precision, as there are real-time tracking tools to ensure that radiation reaches its intended target.

Despite our growing rapport with Dr. Chua and NCC and our appreciation for his candid and caring demeanor, we all agreed that it’s best to do the treatment at MDACC in Houston. Logistically, it would be much easier than having to travel back to Singapore for a month. In addition, insurance would cover my treatments in the US vs. the out-of-pocket expenses for treatment in Singapore. Also, it seems like Dr. Phan has more experience with SBRT, having done ~30 cases vs. <5 for Dr. Chua. Dr. Chua did not personally know Dr. Phan but was familiar with his work.

Dr. Chua also re-assured us that my care would be a collective effort, so I needn’t worry about going to different centers for treatment and seeing different doctors. He said he’s happy to stay involved and expects the US doctors to be the same.

NCC is the fifth medical center we’ve visited to get expert opinions, after Northwestern Medicine, University of Chicago Medicine, MD Anderson, and Stanford Medicine. Each have been generous with their opinions and care

The care providers in Singapore keep referring to them as Dr. Melvin and Dr. Gopal, i.e. their first names. They were well supported, as during this visit, there were 8-10 more junior doctors and nurses at various points

Other Notes from NCC

Besides the discussion of the medical aspects specific case, there a few other aspects of the visits with NCC and the doctors worth noting, including i) the business / costs of healthcare in the US vs. Singapore, ii) small circle of NPC doctors, and iii) Dr. Chua fandom.

We had talked to Dr. Gopal and Dr. Chua about the cost of healthcare. They were flabbergasted to learn that the cost of an MRI of the head/neck was ~$5000. We told them in our experience that the amount billed was actually closer to $9000 and that even when I asked about a self-pay price for an MRI, I was quoted a price of $7000. They couldn’t believe it! Dr. Chua also asked me about the price of a pembro infusion. I had written about this in a previous blog post, so I knew the answer. In my case, after switching from a 3 week cycle to a 6 week cycle, UCM was billing insurance over $140,000 per infusion. Insurance ends up paying around $48,000 per infusion per their negotiated rate. That is crazy!! I should have asked how much a pembro infusion is in Singapore. The word that the Singapore doctors used to describe the US healthcare system was “perverse.” I can’t think of a more apt description.

To contrast the systems, during our first visit, Dr. Chua asked his team to provide a cost estimate for me to receive SBRT treatments in Singapore. Within 5 hours (at 9pm on a Friday night, no less), I received an email with that estimate - SGD $29,097.99 for 6 treatments of SBRT. I love that the estimate was down to the penny! That translates to ~USD $22k for all the radiation (but excluding consultations, labs and tests). I’ll be monitoring the costs of SBRT in the US and will definitely write about it in the future. Surely, the cost in Singapore will be a fraction of the US costs.

One other notable aspect from our visits with Dr. Chua in particular is how small the circle is of nasopharyngeal cancer doctors. Either that, or he knows everyone. As an aside, the international guidelines for re-irradiation for recurrent NPC cancer has 24 authors - Dr. Chua and Dr. Lin are two of those authors. Dr. Chua mentioned that he is organizing events with Dr. Alexander Pearson at UCM (a colleague of Dr. Rosenberg, my oncologist) and the other PI on the phase 1 trial. Dr. Chua referred the other doctors by their first name, as that’s how he knows them. Dr. Gillison was “Maura” and Dr. Lin was “JC.” In a small way, it made us feel like we were a bit player in their world.

Finally, it’s again worth mentioning our appreciation for Dr. Chua. This started long before our visit, as we’ve heard his name since the first recurrence and seen his publications for conditions particularly relevant to my mine. Not only that, but one of my dear friends insisted that we make attempts to see him. As a doctor, s/he was also extremely helpful in preparing me to ask good questions for the doctors. Because I’ve been able to discuss my case with good friends who are doctors, I think some of their terminology has rubbed off on me. That, plus the fact that I’ve stated my medical history so many times and know it well has nurses and doctors ask me whether I myself am a doctor or in the medical field. That is flattering.

When my friend looked up the good Dr. Chua’s background, s/he was struck by his profile picture. I believe the term “Asian James Bond” was uttered. I said he probably looked like my long lost Singaporean brother. You can decide for yourself in the pictures below. I did warn Dr. Melvin that when he comes back to ASCO in Chicago, he may have a stalker / superfan on his hands.

From his SingHealth profile page

Long lost brothers?

The Path Forward

Overall, the medical visits in Singapore was hugely beneficial. We left feeling like we had a decided on a path forward - SBRT at MD Anderson - and knowing that we can continue to seek their advice on an ongoing basis. The costs to receive all the visits and tests (including two endoscopies, biopsy, blood work, etc.) was well worth it and a bargain, really. We viewed their opinions as worth their weight in gold, but we paid more of a bronze price.

We continued to feel better and get more confident about the path forward in the days after coming back from Singapore. I emailed Dr. Lin, and he also agreed that starting at MDACC now was the best way to proceed. I communicated our plans with the doctors and have been having follow up discussions. They are supportive, which I appreciate.

One (slight, hopefully) complication is that I somehow contracted Covid. While we had some exposure at the airports and flights, none of my family got it. So I might have been exposed in the first few days after returning to Chicago. Because of my positive test, I’ve had to delay the treatment planning sessions at MDACC originally scheduled for 17-20 July. Hopefully this won’t have much impact on the treatment plans. It’s felt like a mild case - some low energy days but close to normal around day 4. I didn’t lose my sense of taste or smell nor did I run a fever. I’ll finish the paxlovid course and hopefully things will continue to get better.

In Conclusion

Once again, if you’ve made it all the way to the end, thank you very much. I’m not sure how much of this much detail is interesting for you, but it does help me to keep my thoughts straight and recorded for reference.

At this point, we need to focus on the treatment and making sure we have everything in place to maximize the chance of success. That will mean we’ll be in Texas for a few weeks and making sure we can be together and supported. Even though this treatment plan has a shorter duration and potentially less faster recovery time vs. the long-course radiation, I’ll probably still take some time to make sure my mind and body aren’t unnecessarily stressed or burdened. There will still be some decisions to make post-SBRT, and that may or may not involve chemo, which could take some physical and mental energy. Once I get more post-SBRT treatment clarity, I can then fully get back into the swing of things. The hope is that this treatment plan will give me decades to enjoy life without side effects. If the tumor is progression free after 18 months, the chances are good that it won’t ever come back. So, a few months of discomfort to gain years of enjoyment is what we’ll do.

Thank you for your love, care and support. We appreciate it.

Maintenance Immunotherapy

As mentioned in my last post, I’m currently on a maintenance immunotherapy program, with infusions of pembrolizumab (Keytruda) every 6 weeks. I’ve had five such infusions - 31 Aug, 14 Oct, 23 Nov (day before Thanksgiving), 13 Jan and 21 Feb. Since I’m now only getting one drug per infusion visit, the appointments are shorter and I am going less frequently. Though I’m getting 2x the amount of the pembro I received during systemic treatment (400mg vs. 200mg), fortunately, the side effects have been minimal. In the few days following an infusion, I might be slightly more fatigued. In addition, the immuno drugs seem to cause some fullness in my right ear but that typically goes away in a few days.

Scans

I am living from scan to scan. My first monitoring scan was on 15 October, with an MRI of my head/neck. Fortunately, that scan showed stability, i.e. no growth or change in the tumor. So that was quite a relief. I was somewhat nervous since one of the oncologists mentioned that sometimes the drugs peak in cycle 4-5, so there could be growth after finishing chemo.

The plan that we had discussed with both the team at MDACC and at UCM was to do close monitoring - scans every 2-3 months for the first year and then longer intervals after that. So, following the October scans, the original schedule was to do a set of scans - MRI head/neck and CT chest - in early January, since we were traveling throughout most of December. Sadly, though not unexpectedly, insurance approvals got in the way again. I first got wind of this when UCM rescheduled my scans from 10 January to 23 January. Long story short, insurance (in this case Aetna as the carrier and Evicore as the benefits manager to handle procedure approvals/authorization) didn’t agree with the plan. They will not approve scans with intervals less than 3 months. So the 23 Jan date should have been fine, but the appeals processes wasn’t handled well, and I was told that UCM could not file another request for a further 45-60 days. As I’m sure anyone who’s dealt with the healthcare system bureaucracy in the US can attest, the system can be maddening. Plus, it consumes a lot of time and effort that most people do not want to provide towards this issue.

The result of all this? I got my CT chest scan on 23 January (that was approved, as I didn’t have one in October) but no MRI. I didn’t officially get confirmation of the MRI denial until I had already finished my CT scan that day and after spending 2 hours on the phone with insurance. And with no MRI approval, I had to get a CT scan of my head/neck instead, which was performed on 2 February.

Similar to the scans results from October, I had elevated anxiety around the scans and was relieved to hear that the scans continue to show stability, i.e. no suspected growth or recurrence. My anxiety for these Jan/Feb scans is related to the ear fullness that started in mid-December. After flying from Maui to SFO on 16 Dec, my ears, particularly the right one, were full for a few days and then have intermittently full since then. I tried to clear the fullness through the valsalva technique, but to no avail. The first few days were especially concerning since ear fullness is the symptom that resulted in the first cancer diagnosis in 2018. So I spent much of the Christmas and New Year’s holiday worried that cancer may be returning. Unfortunately, I didn’t feel as upbeat as I would have hoped and the concern took me out of the moment. That is, I wasn’t as present for all the time when I was with family, as my mind was running through different scenarios.

The ear fullness did get better but didn’t resolve fully. After the first 2-3 days, when the right ear was full most of the time, I had days when I would wake up with clear (normal) hearing. I hoped that this would have meant the issue was temporary. However, the fullness would return later in the day, but then resolve without any intervention on my part. This continued for the remainder of the time in California. After flying back to Chicago, the issue also persisted. In addition, the tinnitus (ringing) also came back and seemed to be a little more noticeable than before. That being said, it could have been at the same level as before, but I may have had a heightened sensitivity to it.

I had emailed the care team at UCM. Since the fullness was intermittent, they did not think it was likely caused by the recurrence of cancer. However, with the scans pushed back (from 10 Jan to 23 Jan), I would have to wait longer to get confirmation. So on the day of my infusion appointment (13 January), I requested to see someone from the ENT department. The PA and NP I saw gave a very logical explanation of what may have caused the fullness. First, when she did the exam, there was “excessive” ear wax, so much that she could not see the ear drum. After removing the ear wax, her exam and the audiologist exam didn’t reveal anything concerning, with results similar to previous exams. The cause of the fullness and tinnitus, they believe, was water being trapped in the ear canal due to the excessive wax, combined with the pressure changes from the multiple flights caused sensitivity to an already damaged area. We went snorkeling in Maui three times, so I suppose it’s not surprising that water could have gotten trapped. It was the first time I’ve been swimming or underwater since the treatment. This visit definitely reduced some, though not all, of my anxiety. I will have to try to keep my ears cleaner in the future, though.

After my CT chest on 23 January, I had an appointment to see Dr. Roxbury, my ENT, on 25 January. In addition to the standard exam, he also did an endoscopy. He also assured me that everything looked normal. So again my anxiety was reduced. But I was still wanting / needing the scan confirm. That didn’t happen until more than a week later, on 2 February.

While the technologies between a CT and an MRI are quite different, I was assured that the CT could detect if there were any changes to the nasopharynx and if there was a growth. The scan did not show any. In the future, I am expecting to return the original plan - MRI head/neck and CT chest but every 3 months. I suppose one benefit of the CT scan is that it’s much easier for me as the patient. The scan itself is quite shorter - probably only 10-15 minutes for a CT vs. ~45min for an MRI.

Signatera Blood Test

In addition to the scan, I had some blood tests done with Signatera, which would compare my blood against the DNA of the tumor. The first test came back negative and so did the follow up. After that, the medical team at UCM decided not to continue with the testing. The rationale being that since my first result was negative, further tests wouldn’t offer much clinical value. That is, the test is either not sensitive enough to produce a result or there is no tumor remaining. So the only result from the test that would have validity would be if it came back positive as an early sign of recurrence. But is something we’ll be monitoring with the scans.

Side Effects and Other Issues

I have been trying to adapt the “new new normal” of increased anxiety. This isn’t an everyday issue, but it does crop up from time to time, especially around episodes where I am a little sick or have concerns. Any sort of illness makes me question whether it is a normal illness, related to immunotherapy treatment, related to a long-term side effect of radiation, or the recurrence of cancer. So every minor issue, no matter if it it has reasonable explanation, makes me worried, at least until it completely goes away. Even when I get a headache, I can’t rule out that it’s not the tumor returning and pushing against a nerve in my head. Only when I wake up the next day without any pain and without any pain killers do I feel more comfortable that it’s not tumor-related.

In the past few months, another issue that’s come up is the muscle spasm / seizures / cramp the right side of my mouth and tongue. I was freaked out the first few times it happened. This usually occurs while I’m eating and it results a temporary lack of ability to swallow or talk normally. It goes away after a few minutes and seems to return to normal, but we are still not sure what is causing this. I did see the speech pathologist about the issue, and the recommendation is to continue to do the exercises. But this may end up being a long-term issue I’ll have to deal with. It was quite concerning at first, but now it doesn’t really cause me much worry.

Thank you again for reading all the way through this medical-related post. I can’t complain about my health. I can still enjoy all the flavors and have no restrictions on my activity and energy levels. Hopefully my next posts will illustrate what I mean and provide more visual evidence.

Some of the positive news is a tempered, however, by remembering that this is a recurrent cancer and what that means. This hasn't been an easy post to write and it’s a long one, too. There is a lot of detail about the options and considerations around the next phase treatment, so if you want to skip that detail, jump ahead to “Our Treatment Plan” section.

Summary

• Finished the first phase of treatment - the planned 6 three-week cycles of chemotherapy + immunotherapy. The last cycle started 3 August, so technically the cycle finished on 24 August

• Post-chemo MRI scans showed excellent response - there was a near complete response, as there is little, if any, of the original tumor left. There isn’t clarity on a small part of the imaging, so it’s unclear if that is the tumor or inflammation

• Started the next phase of treatment on 31 August. This will consist of maintenance immunotherapy (IO) only, with 6 week cycles. There is no immediate need to get radiation

  • There was not a strong consensus for what this next consolidating phase should entail, so the uncertainty around what to do next and weighing the various options and the reasoning behind them was not easy for us

  • We had in person consultations with MD Anderson and UCM as well as contact with doctors at Stanford and in Taiwan

  • No re-irradiation is a relief, as that means the longer-term side effects of quality of life issues that it could impact shouldn’t be an issue, at least not for now

• The plan is to get scanned regularly - every 9-12 weeks - to monitor the response and check on the whether the tumor is growing. We’ll be living from scan to scan

End of Systemic Treatment

Overall, the first phase - systemic treatment - went about as well as we could have hoped. I tolerated the drugs quite well, with only mild side effects and no negative surprises. As detailed previously, cycle 4 was the most fatigued I felt throughout the treatment, but I felt quite normal in cycles 5 and 6. The blood test results did show some lower counts, so I’ve had to take injections to counteract those impacts, but in terms of day-to-day activity and feeling, I don’t feel it affected me physically.

Including the previous treatment, my body has been through a lot the last 4 years (since the first diagnosis). Here is the list of treatments I’ve received.

• Radiation: 35 fractions (over 7 weeks) of radiation, total of 70 Gr

• Chemotherapy and immunotherapy: 35 infusions so far

  • 3 infusions of cisplatin, as a sensitizer to radiation (weekly) - 2018

  • 2 infusions of carboplatin, as a sensitizer to radiation (weekly) - 2018

  • 3 infusions of carboplatin, as adjuvant chemotherapy (every 4 weeks) - 2018

  • 3 infusions of 5-FU, as adjuvant chemotherapy (every 4 weeks) - 2018

  • 6 infusions of carboplatin, as induction chemotherapy (every 3 weeks) - 2022

  • 11 infusions of gemcitabine, as induction chemotherapy (every 3 weeks) - 2022

  • 6 infusions of pembrolizumab, as induction immunotherapy (every 3 weeks) - 2022

  • 1 infusion (so far) of pembrolizumab, as maintenance immunotherapy (every 6 weeks) - 2022

• Scans and other procedures (so far):

  • MRI: 8 total- 3 at NM, 2 at UCM, 3 at MDACC

  • CT: 5 total

  • PET: 2 total

  • Port implanted and removed

Visit to MD Anderson

After the last infusion of gemcitabine on 10 August, we went to Houston for follow up consultations with the team at MD Anderson. We managed to get Drs. Hanna, Gillison and Phan all scheduled on Tue/Wed, but the trip turned out to be a 5 day trip, from Sun morning through Thu evening. Since I was getting fitted for a stent and fluoride trays in oral oncology, I had to go in for a Covid test on Sunday, roughly 24h before the appt to take impressions of my mouth. That was the only appointment on Sunday - a 5min visit to get a Covid screen.

The MRI scan on Monday was the key. I had gotten a pre-treatment scan at MDACC on 31 March, so this scan would be the comparison to see how the tumor responded. I have no problem getting the MRI scan itself - I’m not claustrophobic, so I’m able to lie still for ~45min while loud magnets spin around me and take images. I usually get into a meditative / semi-conscious state.

Our appointment with Dr. Hanna, the head & neck surgeon, on Tuesday started the good news. The cycle 2 and 4 scans showed good response, so we were guardedly optimistic about the results of this scan. Dr. Hanna called the scans “amazing” and “remarkable.” There was near complete to complete response, as he could only see a little asymmetry between the two sides and it’s not clear whether that was caused by cancer cells or inflammation / scar tissue.  His PA did a visual exam with an endoscopy through my nose and didn’t notice any asymmetry.  In terms of the next phase of treatment, Dr. Hanna definitively ruled out surgery and thought radiation would be the best course of treatment.  He also said it’d be better to start sooner rather than later - within the next 2-3 weeks (by early Sep).

Wednesday was an important day, as we were scheduled to see Dr. Gillison (medical oncology) and then Dr. Phan (radiation oncology). Dr. Gillison read the MRI similarly to Dr. Hanna, and she estimated a 97-100% response, with the 3% being the unclear part.  According to her note, “He has had an excellent response with one area of slight enhancement that precludes use of "complete response", but could be inflammatory.”

Her recommendation was to do to maintenance immunotherapy - 400mg of pembro every 6 weeks (instead of 200mg every 3 weeks), with imaging every 9 weeks to start (with the intervals lengthening the further out from treatment I go, assuming no issues). Pembro is the same drug I’ve been taking and the increase in dosage should not cause any issues.

She said she would be “shocked” if Dr. Phan recommended radiation, especially since she said they tend to think alike on cases.  Her reasoning was that the risks of doing radiation now would outweigh the benefits, and if the cancer did return / grow, then radiation would no longer be an option.  

She said that she would continue with the maintenance immuno so long as it’s tolerated.  She said the body may at any time show that it can’t take any more, so I’d have to be vigilant - assume all issues may be immuno-related and not caused by something else (her example was that if I had diarrhea and had eaten a burrito beforehand, don’t assume it’s the burrito).  Dr. Gillison said we should celebrate not having to do radiation.  

When I asked her about any more aggressive approaches, such as more chemo (gemcitabine) and she did not recommend any more.  She noted that the studies were only for 6 cycles of chemo and not chemo+immuno afterwards.

Immediately after that appointment, we saw Dr. Phan.  We viewed this recommendation as perhaps the most crucial. We liked him from our previous visit, and it sounded like he had the most tools at his disposal if radiation was indicated. During our consultation, Dr. Phan recommended a stereotactic radiation treatment (SBRT) plan, consisting of 3 fractions and a total of 27 Gr.  It would be done in one week, on M, W, F, with minimal expected side effects during treatment and only mild side effects (swelling, mouth sensitivity, fatigue) for 1-2 weeks after that.  He and his team said that I should be able to eat and drink normally for the most part, both during and after treatment.  He would target that 3% uncertain area with the highest dose and then decrease the dosage around that. This did sound a lot better than my previous radiation (35 fractions, total of 70 Gr), which affected my entire mouth and neck. I lost 40 lbs during that radiation treatment in 2018, so the highly targeted SBRT sounded quite different.  

In terms of the rationale for radiation now vs. saving for later, Dr. Phan said that radiation now would allow him to target more precisely a smaller area and use a lower dose than what the tumor was before and what it might be if it came back.  It wasn’t totally clear whether the radiation field would be the size of the original tumor, which abutted critical structures, or somewhat smaller. He did provide a warning that any surviving cancer cells would be hardy and can grow with a vengeance.  He estimated that in situations like mine - HPV/EBV+ cancer, good response to induction chemo - there could be a 70% chance of cure with the stereotactic treatment plan.

After the initial meeting with him, we started the radiation planning session. This started with making a mask and doing an initial CT scan in the treatment position.  The mask is a piece of molded plastic that would hold me head in place while getting radiated. This was to prepare for more radiation planning scans scheduled for the following day.

After the mask was made, we had some follow up questions and talked with his nurse and Dr. Phan again, particularly since his recommendation was unexpected given what we heard from Dr. Gillison moments before.  First, his nurse said that Dr. Phan would always recommend consolidating radiation except if the tumor had grown and the side effects would be too severe (not the case here).   When I asked Dr. Phan again about the treatment plan, he didn’t realize that Dr. Gillison was recommending maintenance immuno only, with radiation as a “backup” in case the tumor grew.  Dr. Phan then said he was fine with either option - a) maintenance immuno plus radiation as needed or b) radiation now. He said a) may be associated with better quality of life outcomes whereas he thought b) would be for patients who want to hit the cancer hard and minimize the risk of recurrence.  He did note that immuno has the possibility to get better over time, as the body’s cells are better trained to attack the cancer cells.

We also discussed a hybrid idea.  That is, we would start the maintenance immuno and then come back to MDACC 9 weeks later for scans.  After some email discussions the following week, that seems to be plan he is most in favor of.  He seems fine with the risk of the tumor will grow strongly during this maintenance immuno phase.  He noted that the strongest response to chemo/immuno is after 3-4 cycles, so it could come back.  However, my imaging did seem to indicate that the tumor continued to get smaller in cycles 5 and 6, so I’m hoping that is a good sign. Our decision tree is along these lines based on the scan results:

• If the tumor continues to shrink and/or if the imaging makes it clear that the 3% is non-cancerous, then continue with the maintenance immuno only - no radiation

• If there is no change, i.e. the 3% is unclear, then consider the radiation plan

• If the tumor grows, then start the radiation ASAP  

During the visit to MDACC, I still wasn’t certain what the best course of treatment was, so we continued with the radiation planning session on Thursday morning. The original plan was to do 3 scans (MRI, CT, PET) in the treatment position, i.e under the mask and with a stent in place. However, despite the best efforts of MDACC, insurance did not approve the PET scan, so I was not able to get that scan done. Dr. Phan said it would be helpful but wasn’t essential for this part of the treatment planning.

The process of getting an MRI in the treatment position was a bit more challenging than a regular MRI, I have to say. During the fitting, the oncologist had to shave down the back part of the stent (near the back of my throat) to reduce the gagging effect. I think we got enough, but it’s different between having it in place in a chair for a few minutes vs. 45 minutes, with a mask on top of that. In addition, I was a little stuffy during the scan and I could not cough or blow my nose since I was locked in place and had a stent in my mouth. So, instead of getting to a more meditative state, I had to actively concentrate on nose and mouth breathing techniques to stay still and in position. I’m glad I learned these throughout my yoga practice, as it really helped. Needless to say, I was glad when the MRI was finally completed. That was the last of the appointments at MDACC.

We left MD Anderson a little more hopeful but uncertain. It was great to learn that the tumor continued to respond well to the drugs but whether or not radiation would be needed weighed on us.

Virtual Consultations

After getting back from MDACC, I reached out to other doctors with whom we’d discussed the case. In particular, Dr. Lin in Taiwan and Dr. Colevas at Stanford provided additional information. This was when I first got the sense that MDACC doctors were the most optimistic about longer term outlook.

The consistent recommendation is that I definitely need to be on some form of maintenance immunotherapy program at a minimum. Dr. Colevas was similar to Dr. Gillison in that he recommended maintenance IO with close monitoring, no radiation. On the other hand, Dr. Lin recommended a more aggressive approach - he preferred radiation plus and a maintenance program of immunotherapy and chemotherapy. The addition of chemotherapy to the maintenance program was a new variation to what we had heard previously.

Consultations with UCM

The week after getting back from Houston, we had a series of consultations with my care team at UCM, who we’ve been seeing regularly. We met with Dr Rosenberg (medical oncology, Wed 24 Aug), Dr. Roxbury (ENT surgeon, Thu 25 Aug) and Dr. Haraf (radiation oncologist, Mon 29 Aug). Overall, their approach seemed to be more based in how to manage / control the cancer rather than pursuing treatments with curative intent.

Overall, they too were pleased with the response from the systemic treatment. In our meeting with Dr. Rosenberg, his recommendations were more along the lines of Drs. Lin and Gillison. He gave the options of a) maintenance IO and b) maintenance IO plus gemcitabine (chemo). So in a way, it was evenly split between the options for maintenance therapy. Dr. Rosenberg was guardedly optimistic in that he thinks the time where we have control of the cancer is “not weeks or months but years”…while caveating that “years” can be quite a range.

The visit with Dr. Roxbury was similar to the visit with Dr. Hanna. Both have excellent demeanors, balancing optimism with probability. And in both cases they do believe the risks involved with surgery outweigh the benefits, particularly given the response of the tumor.

Our meeting with Dr. Haraf was enlightening. He was quite straightforward and took time to address the issues, risks and outlook. He seemed less pessimistic than when we met him the first time in March. Again my case is complicated - he said that he could make a recommendation case for and against radiation with equally compelling reasons. While our discussions with Dr. Phan made it seem like the side effects of SBRT would be minimal, Dr. Haraf was more concerned about the longer-term quality of life issues if the radiation field was close to the critical structures of the original tumor. He showed us the radiation field in the 2018 treatment and was wondering how large the field would be in Dr. Phan’s plan. The issue is that even though the tumor looks to have shrank (from the March 2022 size), addressing any remaining microscopic cancer cells (that don’t show up on the MRI) is hard. If this round of radiation focused primarily on the potentially remaining cancer but less on the original boundaries, would that really reduce the possibility that the cancer would come back? That is the hard question.

Another point that Dr. Haraf brought up is that gemcitabine is a huge sensitizer for radiation. That is, gemcitabine would make radiation treatments quite rough, so there would need to be a several week break between taking gem and starting radiation. For that reason, he did not recommend gem+IO as the maintenance course, as radiation is still a possible course of treatment.

We appreciated the discussion and felt more informed about how to proceed. UCM did suggest two other ways to monitor the tumor, and we will plan to pursue those. First, Dr. Haraf emphasized that the PET scan might reveal whether there is remaining cancer in my nasopharynx. If there is, then we should proceed with the radiation plan. Second, Dr. Rosenberg mentioned a blood test developed by Signatera. This is a technology that measures ctDNA (circulating tumor DNA) and MRD (molecular residual disease). The concept is that Signatera will sequence my tumor’s DNA and then develop a custom test to see if that tumor’s DNA is circulating in my blood. If the levels increase, then that (unfortunately) is a sign that the tumor is recurrent/growing. But if it’s initially positive and decreases, then it’s a sign that the maintenance IO is working well. If the first result is negative, then that may mean that there’s no cancer remaining (which would be great). We got the blood drawn for this, but the results won’t return for 5-6 weeks - probably sometime in mid-October.

Our Treatment Plan

Sorry to dump all of this into the blog and if you’ve made it this far, you’ve done really well. In summary, we are pursuing a plan of the maintenance immunotherapy (with pembro, aka Keytruda) only - no chemo (gemcitabine). This will be on a 6 week cycle, so the dose would be double what I had previously been receiving but I wouldn’t have to go in for infusions as frequently. This maintenance therapy will hopefully last 2+ years, which would mean that the cancer hasn’t returned and the immunotherapy wouldn’t have caused any issues. In general, IO is well tolerated, but the doctors said that it could cause issues at any time. The fact that I haven’t experienced any adverse effects so far doesn’t mean that I won’t in the future.

For monitoring, we will plan to get imaging done every 9 weeks, with the first scan likely at MDACC, since they have the most relevant comparison scans, and the changes we are checking on could be minute. In addition, the PET scan and Signatera test may help inform the decision on whether SBRT is needed in the immediate future. Radiation will be required if the tumor starts to grow.

What Does It All Mean?

So while we got the good news that the systemic treatment produced a near complete response, it didn’t feel like a time to celebrate. [The cover image was from dinner the first night we arrived in Houston, before any visits.] Since April, we’ve been so focused on the treatment plan that we didn’t think about the scenarios we had discussed when we first got news of the recurrence. For me, I had mentally blocked out longer term outlook concerns and was focused solely on the getting through the treatments day-to-day and week-to-week. I was at DCAM (the building at UCM) every week for treatments, visits, scans and was taking drugs and shots nearly every day. In addition, we had to be cautious about getting Covid or any other illness that could delay treatment, while balancing that with being physically active and mentally engaged with work, which probably also helped to keep our minds more positively focused. So everyday thoughts were more focused on the treatment and near-term outcomes.

But with that day-to-day treatment phase now completed, we were reminded that the reality of the situation is I have a cancer that is recurrent. It’s already grown or come back once - in fact returning in the center of the radiation field and after being hit with consolidating chemotherapy - proving that it is hardy, and it is likely to mutate again to evade the drugs that have worked previously. The reminder of this status was sort of a rude awakening to the scenarios that I had blocked from my mind for such a long time, or at least since April. Even though we are in a much better position today than at first diagnosis, the prognosis isn’t favorable.

So while we hope that I’m part of the group that can attain long term control / remission - around 20% of the patients who have had a similar response to systemic treatment go 5+ years without progression, based on earlier studies - we will be living from scan to scan. For the next few years, I’ll be going in for scans every 9-12 weeks and anxiously waiting the results, hoping to receive news that the cancer remains under control and that there is no growth or recurrence. During that time, we’ll have to hope that i) the pembro I’m receiving and my body’s response become even more effective at killing whatever cancer is remaining while also not causing any adverse effects and/or ii) advances in treatment therapies, most likely immunotherapy, personalized medicine and/or radiation, will provide for more options in case the cancer comes back. Who knows, maybe the longer end of the curve has >20% survival rate with the current immuno drugs, as the studies were mostly done before these drugs were used for NPC.

In addition to the expected anxiety around the scans results, I’ll likely have more day to day worries. As Dr. Gillison noted, I can’t rule out IO as the cause of any health issues. In other words, if I have a cough or fatigue or skin irritation or hearing changes or tongue sensitivity or intestinal/digestive issues or any other health changes, those could all be caused by the immuno drugs. While I’ll need to be hyper vigilant about monitoring how I feel, at the same time I want to make sure I can continue taking the pembro, as that is my main defense against the cancer. So it’s kind of a catch-22. Any little health issue will now cause greater concern, especially given the increased stakes that it could mean I can no longer stay on immunotherapy. It’ll be a relief to confirm that any health issue is not IO-related.

Part of the rationale behind the varying recommendations from highly skilled and experienced doctors was driven in part by balancing trying to kill the tumor today (curative approach) and minimizing the chance of return vs. saving treatment options for the future, i.e. radiation, different chemo drugs, etc., in case it does come back. They all remind us that this is a complicated case, with no straightforward plan. There are other chemo drugs I haven’t taken, so there is a chance that those drugs the cancer hasn’t been exposed to before can control it, at least for a time. But at that point, that is probably more palliative than curative.

It’s been a lot and not easy to try to process all of this. I have to believe that I’m going to be one of the long-term survivors. I’ll have to do whatever it takes to achieve that, even if it means some loss of quality of life. This may include eating/tasting issues, hearing issues, and other effects. In the best case, I’ll continue to take IO drugs for a few years, nothing will show up on the scans or in the blood tests, and eventually, the doctors (after 5 years) may be able to declare me cancer-free. I have to believe that. Mentally, I want to stay in that place and act as though that is the expected outcome. That being said, I can’t take that for granted, and the times where I consider my mortality can be really challenging. Since you probably know how much of a planner I tend to be, even starting to think about making plans along those lines, what memories I want to still create, what legacy I want to leave behind, especially for Aiday and Charles, is the hardest part.

As I may have mentioned before, this will almost certainly change my outlook and perspective. I’ll have to do a better job of prioritizing what is truly important and meaningful and not get bogged down in things that don’t really matter. We can no longer afford to put off or push back things that we want to do. I’ll have to do a better job of celebrating life and appreciating the little things.

What hasn’t changed between the initial diagnosis and the recurrence is the love and support of Aiday. She’s been with me every step of the way, and I wouldn’t be in as nearly a strong position without her. Her strength and resolve have ensured that I get healthier and make progress. It’s a lot to bear and she is truly a co-survivor. What has changed from 2018 to now is Charles, the most adorable, loving, cutest and entertaining little guy. The chance to watch and influence as he develops is a joy. Growing together as a family is what drives and motivates, especially during those tougher times.

Thank you once again for taking the time to read through this and for your support.

As far as how I’m feeling, fortunately, my fears that the cumulative effects of the drugs would make cycle 5 rougher were not realized. Cycle 5 was more like cycles 1-3 than cycle 4. By that, I mean the nausea and fatigue I experienced in days 3-5 were more similar to the first few cycles than cycle 4. After that, I started to feel better and got back to normal before the day 8 infusion. This was quite a relief, as the fatigue throughout most of cycle 4 was a challenge. My energy and appetite were normal throughout the cycle. I have managed to maintain my weight and eat and taste normally.

There are a few ongoing side effects, though. Again, these are relatively mild and manageable, so overall the treatment is going about as well as can be. First, the fullness in my right ear has persisted. It’s the same feeling as when the pressure doesn’t equalize after a flight. My hearing isn’t equal between my left and right ears. It sometimes feels like I’ve left an AirPod in my right ear but when I reach to take it out, there’s nothing there! I’ve now had this for about a month, so perhaps I’m getting more used to it. I did see Dr. Roxbury, my ENT, who did an exam and did not find anything concerning. He believes, as other doctors have stated, that the Eustachian tube is small and has been through a lot during the treatment. They believe that the ear fullness, especially since it’s only on the right side, is treatment-related and expect it to return to normal eventually.

The second impact is the loss of stamina. Throughout treatment, I’ve been trying to get the gym regularly (though not going as much as I had hoped). The last week or two I’ve noticed that I’m having to take more breaks or do less intensive reps/intervals. It’s still good to do a HIIT or cardio-based class, but I have to regulate my effort. For yoga classes, more gentle / restorative classes may be what I seek the next few weeks.

In addition, the cumulative effects of the drug treatments is reflected in my blood counts. I’ve been taking Zarxio injections to help boost my white blood cell count (WBC) and my absolute neutrophils. This helps to increase my ability to fight infection. These need to be above certain levels in order to receive treatment. I’ve been out of range for other items, as well, but these can’t be managed by drugs or diet / lifestyle. For example, in cycle 6, my carboplatin (chemo drug) dose was reduced because of low platelet counts. All of these impacts are common and not concerning, and they should return to normal post-treatment, according to my care team. I don’t feel any different based on the blood counts. However, I do need to be mindful of them, as I could have elevated risks when they are out of range.

Finally, as the there is only one more infusion left to complete the 6 cycles of systemic treatment, I asked the care team if the alcohol prohibition can be temporarily lifted, at least between the end of this phase and the beginning of whatever the next phase may be. They first asked me whether I had in mind a rager (“boys night out” in their parlance) or a celebratory glass. So I had to downgrade my expectations. I asked if I could have wine / cocktail with dinner. They asked me how much that entails - usually no more than 2 for me. They want me to limit to 1 (for the day, not the hour). They also suggested that it’d be a good wine, so I guess my planned purchase of Two Buck Chuck or the best boxed wine will be be for another time. Any suggestions on what I should drink instead? In Houston, we’ll be ordering cocktails or wine off the menu, but back in Chicago with access to my locker, I’ll have more choices. Champagne? White Burgundy? Dessert Wine?

Hopefully I’ll provide a more timely update next time. We’ll have some news to report from Houston, both the treatment plan and the eating adventures.