My Breast Cancer

Pain is Gone

2023-07-09T21:42:00.002-07:00

I hope I don't jinx it by saying this, but most, if not all, of my pain is gone. A month ago, I would have said I'm in pain every day, but not anymore. I do still have some soreness and stiffness, but the sharp pains in my hips are gone. The pain was caused by the aromatase inhibitor I was taking.

I just tested it. The bed in the guest room is a bit too high for me, and climbing into it always hurt my hips. It didn't hurt at all this time.

A month ago, my pain peaked. Every movement of my legs and hips hurt to the point where I was in tears. Tylenol did not help. I happened to be chatting with Ate Rose at the time, and she recommended ibuprofen, but I didn't have any. I did have Aleve (naproxen) and took two tablets that night. It made a huge difference! There was still a bit of pain, so I bought some ibuprofen the next morning and took two tablets. I haven't taken any painkillers since then, and it seems that my pain gradually disappeared.

What could have caused the sharp pain to go away? Some things that I did recently:

I had physical therapy for my legs because I had difficulty getting up from a squat or even just lowering myself to the floor. It seems I'm always picking up stuff from the floor and also have to squat to squeegee my shower stall after a shower. The physical therapist said the exercises she gave me would help not just my thighs but also my hip pain.
I've since stopped the PT exercises and switched to doing free weights, especially for my upper legs.
Now that summer's here, I've been eating a lot more fruits, not just in terms of quantity but also variety. This includes a lot of fresh cherries, which have a good anti-inflammatory property.
I drank tart cherry juice but just one bottle over several days. Tart cherry juice is often recommended in the aromatase inhibitor forum I frequent.
For the entire month of June, I took Claritin daily. Claritin has an anti-inflammatory property.
As mentioned above, I took Aleve and ibuprofen but just two doses.

I don't how much the above actions helped. Most possibly helped (I have doubts about Claritin), but maybe something else caused my pain to ease up. I hope it doesn't return.

Osteoporosis or Osteopenia?

2023-06-19T22:16:00.002-07:00

Last week I had a bone density scan at Kaiser. The previous one was two years ago at Stanford. Kaiser's diagnosis is I have osteopenia, not osteoporosis. That's good news. However...

As you can see in the table below, my spine got worse, although my left hip improved. But because Kaiser didn't scan my right hip, I may still have osteoporosis (-2.5 or lower). If Stanford hadn't tested my right hip, they would have also diagnosed me with just osteopenia.

My guess is I still have osteoporosis. It doesn't matter much, I suppose, whether Kaiser thinks I've improved to osteopenia. The treatment is the same. I continue with Zometa, calcium and exercise.

ER Visit

2023-04-20T19:00:00.000-07:00

Summary: Went to the ER due to breathing pain. All tests came back normal.

Back in January, I developed pain on my right side when breathing and with certain movements. I sent a message to my oncologist asking if I should see her or my PCP. Many hours later, I received a reply saying to go to the ER.

I did not want to go to the ER because I've heard you can get stuck there for hours. I called Joy to ask for her opinion. No answer. Called Ate Rose. No answer. Called Emily. She answered! She said I should go because I might have a blood clot. Joy later called back and agreed about going to the ER.

Armed with a book, I drove over to Kaiser. It's less than 2 miles away. I did not have to wait long in the waiting room before I was called in, maybe half an hour. But there was more waiting inside before I saw a doctor. She ordered blood tests and a CT scan.

I was sent back to the waiting room to wait for the CT scan. Three and a half hours later (or maybe it was four; I got so tired of waiting and almost left!), they called me in. The CT scan requires a dye for contrast, delivered via IV. The first nurse attempted to insert the IV and failed. The second nurse took a look at my arm and didn't even try. The third nurse was confident he would succeed, but he was wrong. Finally they brought in an ultrasound to find my vein and got the IV needle in.

Then they moved me to a room and made me wait again! In the meantime, someone came in and did an EKG on me. About three hours later, I was finally taken to the CT scan room. I had asked the doctor, a nurse, and the CT scan technician if the dye would hurt. They all said no. But it hurt! Not as badly as the dye used for MRIs, but it was still painful. In fact, earlier in the evening when the nurse was inserting the IV, I was trembling so badly because I knew the dye would hurt.

When the dye was injected, aside from the pain, I had a sensation of warmth in my throat and between my legs. I have heard of this reaction before, as if you were peeing. Strange sensation.

Anyway, all my tests came back normal. Maybe my pain was caused by a muscle sprain or something, although I don't know what I could have done to cause it. I was told to follow-up with my PCP but never did.

I finally went home nine hours after arriving at the ER. The pain went away after a week or two.

Oh, the cost of my ER visit? Only $50. This was with Kaiser, and the cost varies with the health plan.

Cost breakdown:

Item	Cost
ER visit	$2,555
Doctor	$365
CT scan	$400
EKG	$23
Total	$3,343

Cost of Breast Cancer Treatment

2023-04-20T17:51:00.002-07:00

Before I get into the costs, a little explanation of terms:

Billed amount - What the provider usually charges.
Paid by plan - What insurance actually paid. This is substantially lower than the billed rate because there is a discounted rate negotiated between insurance and provider, AKA plan rate.
Paid by me - Difference between plan rate and amount paid by plan.

This is the total cost from the time I was diagnosed until my chemo port was removed:

Billed amount: $2.4M
Paid by plan: $1.1M
Paid by me: $8,600

I didn't actually pay $8,600. I had financial help from Amgen, Genentech and Kaiser. My cost was closer to $4K.

Some notable prices:

Procedure	Cost
Chemo	$440K
Lumpectomy	$46K
Radiation therapy	$100K
Kadcyla	$436K
Chemo port	$27K

Chemo cost is interesting. Some of my infusions were Taxol only, and some were combined with Herceptin and Perjeta which are immunotherapy drugs. The Taxol infusions cost $5K, but when combined with Herceptin and Perjeta, the price shot up to $54K.

Stanford's prices are highly inflated. Some examples:

Item	Billed amt	Paid by plan
Kadcyla (per infusion)	$91,653	$42,160
Office visit	$712	$214
Bone density scan	$1,243	$572

Price comparison among providers:

Procedure	Stanford	Kaiser	PAMF
Kadcyla infusion	$42,160	$11,410
Echocardiogram	$2,843	$962
Biopsy	$8,800		$4,200
MRI	$7,178		$3,374
Physical therapy		$104	$296

In summary, cancer treatment is expensive. Don't get sick without health insurance.

Six-Month Followup

2022-07-29T18:49:00.006-07:00

A year ago I had my last radiation treatment. It seems a long time ago.

On Wednesday I had a follow-up appointment with my oncologist. She's on maternity leave, so I saw a physician's assistant instead. Kaiser seems to use a lot of PAs. I would have preferred to see my oncologist, but the PA I saw seemed knowledgeable and was able to answer all my questions. Everything's normal. No new lumps. My next follow-up appointment is in six months.

The joint pain I was experiencing peaked in May. It's now considerably better although I still get a lot of stiffness after sitting down. My thigh muscles are also weak. I have trouble getting up and down from a crouch. It started in the fall and got worse starting in January. I wasn't sure at first that I was experiencing muscle weakness because there was no reason for it. But it's listed as a side effect of aromatase inhibitors. Going up and down the stairs to strengthen my quads didn't seem to help, but taking the stairs two steps at a time did. I no longer feel I'll one day be stuck on the floor unable to get up.

A new development is occasional nerve pain in my hands and feet (mostly left hand and right foot). The first time I experienced it, it felt like a jolt of electricity in the base of two fingers. So far the pain lasts only a few seconds at a time and doesn't come often. But I'd prefer not to get it at all. I also get pain in my chest, mostly in the area affected by surgery.

After my port was taken out, I got a large area of hard scar tissue. I'm guessing it was about 1.5" diameter. I subconsciously kept massaging the area, and now the hard area is only about half an inch in diameter.

Joint Pain

2022-04-24T21:44:00.001-07:00

For a few months now, I've been experiencing slight hip pain. I also noticed that I'd wake up with pain in my finger joints. A couple of months ago, the pain in my hips got a lot worse. I'd have trouble getting out of bed. Going downstairs, I'd have to do it two-footed. However, the pain would go away after a few minutes of movement.

I felt like I was 80 years old. I thought for sure I had arthritis. Then I found an article saying that up to 50% of women on aromatase inhibitors (AI) experience joint pain. They can also experience muscle pain. Several months ago, possibly around the time I started taking AI, I noticed I had difficulty getting up from a crouched position. It's not clear to me whether it's due to pain or weakness in my thigh muscles.

About a week ago, the joint pain started easing up a bit. I can get up from bed almost like a normal person and don't have to walk two-footed down the stairs anymore. But it still hurts climbing into bed and getting in and out of my car. For the first couple of minutes afterward, I walk funny. Getting up from a crouched position, like when putting on my shoes, is still difficult. And sometimes when I wake up in the middle of the night, my left hip hurts when I move my legs.

According to the article I read, the pain goes away for most women by 18 months. I'm only 8 months into my AI therapy, and I'm supposed to take the pill (anastrozole) for five years.

Shoulder Still Frozen

2022-04-09T10:51:00.002-07:00

Had my fifth physical therapy session on Tuesday. There's been no improvement in sideways motion of my shoulder, so I decided to stop the sessions. I'm hoping my shoulder will suddenly go back to normal this summer when it will have been two years since my frozen shoulder started. If not, I'll either request PT or see an orthopedist again. I had an x-ray done in February and saw an orthopedist then, but nothing out of the ordinary was found.

Lingering Side Effects

2022-03-26T12:02:00.000-07:00

It's been almost six weeks since my last Kadcyla infusion, but I still have some lingering side effects.

Runny nose. My nose has always been runny, but it got worse with chemo and Kadcyla. It has eased up now but is still worse than normal. Occasionally I get a little bleeding.
Split nails. My nails have gotten brittle and split quite often. I think I even lost the nail in my little toe but didn't notice till it had grown back. I bought a bottle of nail treatment with keratin that's applied like nail polish. It even smells like nail polish. It flakes off easily though, and I have to reapply it every couple of days.
Acid reflux. I had been taking omeprazole (Prilosec) daily for a year and decided to stop a few weeks after my last Kadcyla. But I still get acid reflux, and now I burp a lot. So I'm back on omeprazole for a while.
Bleeding gums. Not sure if Kadcyla is to blame for this. In the past when I'd notice bleeding, it goes away after a day or two. But for the past year, it happens quite often and in more than one location, and it takes a while to go away.
Styes. I got a lot of styes from chemo and Kadcyla. I thought it had stopped, but I got another one a couple of weeks ago. Again, I don't know if Kadcyla is to blame for the latest stye.

I used to get fatigue after every infusion. At least it's gone now.

Port Removal

2022-03-12T21:44:00.000-08:00

On February 28, my port was removed. They refer to the removal as a procedure, not minor surgery. But it was done in a surgical room by a PA, and I was prepped as if for surgery, complete with heart rate monitor and continuous blood pressure monitor. The only difference from surgery is that it was done under local anesthesia.

Lidocaine injections are very painful, so I applied EMLA cream to my port area two hours before the procedure, hoping it would help with the pain. I thought it did initially, but at one point I went, "Ow!" when the PA injected the lidocaine too fast.

The procedure was like this except it took much longer, maybe 15-20 minutes. Because I've had the port for 15 months, a lot of tissue had grown around it, and the PA took her time removing it to avoid breaking the port.

I was nervous about the procedure and cried a bit at the beginning. Then I spent the rest of the time trembling in fear. A sheet was placed over my head, so I couldn't see what was happening, but I knew what was happening (thanks to the video 😛), and it scared me. If the PA noticed my shaking, she didn't say anything.

To close me up, she put in "a couple" of internal stitches. I think it was more like half a dozen. Then she applied glue on my skin. No bandage needed.

I didn't have much pain afterward. I took Tylenol at first, but in the evening, Tylenol wasn't helping, so I took Advil instead. One more Tylenol the next morning, and that was it. No more pain after 24 hours.

Last Infusion

2022-02-27T17:12:00.000-08:00

My last infusion was on February 14. Just like traditional chemo, the side effects from Kadcyla are cumulative. I was mostly tired and slept a lot for the next week or so. The last couple of days I've been burping a lot too even though I still take omeprazole (Prilosec) daily.

I was also given a dose Zometa. No side effects unlike the first time.

Tomorrow they will remove my port. Dreading the procedure. I hope it's not painful.

Busy January

2022-02-06T22:54:00.000-08:00

I suppose I should update. Due to omicron, I put myself on lockdown for the month of January except for doctor's visits. Unfortunately I had many appointments in January:

2 blood draws
2 infusions
1 oncologist visit
1 echocardiogram
1 pap smear (cancelled after I checked in)
1 ultrasound
1 mammogram

In addition, there were also five other visits: twice to PAMF and twice to Stanford to get CDs of the mammograms and ultrasounds done at those facilities, and one visit to Kaiser to deliver the CDs. Even though all three facilities use Epic Systems for their medical records, they don't share the mammo & ultrasound files because they're too big.

I was due for a follow-up screening mammo in January, but it got changed to a 3D diagnostic mammo and ultrasound because I was concerned about recent skin changes on my breast -- darkened and scaly skin. They may be delayed effects of radiation. I also noticed a lump below my incision. It may be just scar tissue. The tests didn't show anything of concern.

After my last infusion, I felt very slight nausea off and on for two days. I always get Zofran before the infusion. It was only recently that I started feeling some nausea. It's happened only one other time, I believe in December.

That was #13 out of 14 infusions. Just one more left.

Billing Woes

2021-12-24T10:06:00.001-08:00

Back in October, around the time that Pa died, Stanford sent me a bill for $324.52. This was odd because I had already paid my max out-of-pocket for the year. When I looked into the claim, it showed an NPI number (National Provider Identifier) for a doctor I've never heard of and was out of network. That's why Cigna only partially covered the claim.

My doctor's name is Jennifer L. Caswell-Jin. The doctor on the claim is Jennifer L. McNally. Same first name and middle initial. I remember having to make several phone calls to Stanford and Cigna and spending a lot of time on hold. Stanford finally agreed to review the claim. I believe I also asked Dr. Caswell about Dr. McNally, and she had never heard of her.

Stanford never got back to me, and the bill disappeared from my account, so I thought they fixed the problem and resubmitted the claim to Cigna. But this morning I received an email about the bill. It's back on my account. Stanford's billing department is closed today for the holidays. I called Cigna (and got a poor Filipina working on Christmas Day). They confirmed that the claim was not resubmitted.

I will have to try Stanford again on Monday. They'd better be open then. If they still give me problems, I can call Cigna and request a 3-way call with Stanford.

Update: The problem was on Cigna's end and has been resolved.

Kaiser Switchover Complete

2021-12-01T23:48:00.000-08:00

My insurance coverage with Kaiser started on Nov. 1. I selected Dr. Zhuo as my PCP because I liked her profile on the website. I had a phone visit with her on Nov. 8. She referred me to the oncologist recommended by someone in my support group. I had a video visit with Dr. Chuang on Nov. 17.

That same day I also had a video visit with an endocrinologist, Dr. Vu. Unfortunately I could not get an appointment with Dr. Joan Lo in Oakland, the endocrinologist recommended by my Stanford endocrinologist. Dr. Vu said I could continue with the 3 mg Zometa dosage I received at Stanford.

On Nov. 21 I went to Kaiser Santa Clara for a blood draw. Unlike at Stanford, Kaiser does not do the blood draw on the same day as the infusion. That means I have to get poked with a needle twice as often.

My infusion was the next day. The infusion center has only a few private rooms. Most have beds, but those are given only to patients that need a bed. Only two rooms are available to healthier patients. I was lucky and got a private room, but it was tiny and had a reclining chair instead of a bed. I prefer a bed because it makes it more convenient when applying ice packs to my hands and feet to avoid neuropathy.

Overall the transition to Kaiser went smoothly, and my infusion was delayed by only five days. I was expecting a two-week delay. It's nice that Kaiser is only 5 minutes away, and they don't charge for parking.

Goodbye, Pa

2021-11-20T22:18:00.000-08:00

Pa passed away on October 15, Ma's birthday. Even though he had been in declining health, it was still unexpected. At least he died peacefully.

His funeral Mass was on November 13. It took a while to do the service because the funeral home was still backlogged from covid. Yesterday we interred his ashes in the same niche holding Ma's ashes. We were afraid it would take weeks to do the cremation and that Kit & David would have to leave before the ashes were ready. The funeral home may have helped expedite the cremation when we explained about Kit & David.

This was the eulogy we included in the program we handed out at the Mass.

Dr. Cipriano Medina de los Reyes, Jr. of Hercules, California passed away peacefully on October 15, 2021, on the birthday of his beloved late wife, Tessie. He is survived by his daughters, Marisa, Lou and Kit, and his grandson, David.

Cipri or Doc, as he was known to his friends, received his medical degree in 1952, got married in 1957, and moved to the US in 1974. In 1982 he settled in California where he had a private practice until he retired last year at age 93.

He was a man of great faith who lived a long fulfilling life. He attended church daily and was active in the Filipino community. His faith was such that after his wife died, he would say, “God has a plan for me.”

Cipri was a man of great creativity with music as his passion. An accomplished piano player, he played the piano daily and loved entertaining guests with his music.

He loved his family, friends, and patients, and he was well loved by everyone who knew him. He was a beloved physician, a devoted father and a faithful husband. He will be sadly missed.

Ma & Pa's wedding picture has always been one of my favorites.

Switching Health Insurance

2021-10-04T14:35:00.001-07:00

When I got laid off in March 2020, I was able to continue my group health insurance with Cigna due to COBRA. I had to pay the full cost ($710 for health, dental and vision; the health insurance part is $640). This year, due to the COBRA premium subsidy of the American Rescue Plan, I did not have to pay the monthly premium from April through September.

COBRA, however, is good for only 18 months. I will have to switch health insurance starting November 1. When I looked at Covered CA (AKA ACA or Obamacare), very few of the plans included Stanford and none included my oncologist. Only a few plans through Blue Shield included PAMF where my PCP is and where I was first diagnosed with cancer. The premiums (over $500/mo) and out-of-pocket maximum (over $8000) are expensive. The best I could find was through Kaiser with a monthly premium of ~$85 and max out-of-pocket (OOP) of $6500. The premium is unusually low because of a subsidy, but the OOP is still high.

My problem is that I've already paid the OOP for Cigna. But because the health plans are by calendar year and my infusions are so expensive, I will have to pay the OOP for Nov-Dec on the new plan. Then I will have to pay the OOP again in January for the 2022 calendar year. $3000 + $6500 + $6500 = $16,000. In addition, my HOA has a special assessment of $6,600 due in January for roof replacement. $16,000 + $6,600 = $22,600. The high cost has been upsetting me for a couple of months.

The good news is that once I submitted my application to Covered CA, a new plan I'm eligible for popped up. It's still with Kaiser but the premium is subsidized and costs only $1/mo, and the OOP is only $1000! This is very welcome news. The subsidy is also through the American Rescue Plan and is supposed to be good till December next year.

Once I get my Kaiser membership card, I will have to find a new PCP and get a referral to an oncologist so that I can continue my treatment with minimal interruption. I also plan to get dental and vision insurance.

Chemo curls

2021-09-06T19:11:00.001-07:00

Hair often grows back curly after chemo. Mine is definitely wavy. This is about five months of growth. The curliness is temporary, lasting 6-12 months, sometimes longer.

I think I have way more white hair now. Looks like I still have dandruff. It's not just my body that's experiencing dry skin but also my head.

Jury Duty

2021-08-25T21:52:00.000-07:00

I received a jury summons. While the court claims to enforce six feet of social distancing, their video about covid precautions shows that the seats in the jury box are not spaced far enough apart.

When I talked to my doctor last week, she said I'm moderately immunocompromised. In my response to the court online, I asked to be excused and uploaded a letter from my doctor. Now I wait to see if they accept or reject my request.

Zometa Side Effects

2021-08-23T13:57:00.000-07:00

At my every-three-weeks infusion Friday, I was given a new drug, Zometa. It has a long list of side effects: dizziness, headache, flu-like symptoms (such as fever, chills, muscle/joint aches), cough, vision problems, diarrhea, constipation, tired feeling, joint or muscle pain.

The side effect I was most concerned about was dizziness. But my doctor was most concerned about pain. I was given Tylenol before the infusion and directed to take more when I get home. The infusion lasted only 20 minutes. I felt fine in the evening, just a little bit tired.

The next morning I went to the farmers market. After I got home, I felt very tired and had to take a nap. That's when I got the flu-like symptoms. I didn't feel well at all and was shivering even though I didn't really feel cold. I didn't bother taking my temperature because I had taken Tylenol.

In the afternoon I got up to eat and attend my support group session. After the session ended, I went back to bed and slept fitfully till the next morning. At one point I woke up and noticed muscle pain in both arms, joint pain in the fingers of my left hand, and muscle pain in both thighs. Thank goodness I took more Tylenol or the pain would have been worse.

Most of the pain was gone by morning. I still felt tired but was fine after a few hours. The side effects lasted 48 hours. My doctor said they usually last 24-72 hours.

I will get Zometa every six months. The dose I was given was 3 mg, which is what the endocrinologist suggested a couple of weeks ago. The good news is that the side effects usually happen at the first infusion only. But not always. For some patients it happens at every infusion.

Endocrinologist Consult

2021-08-12T00:25:00.000-07:00

My next phase of treatment is to take an aromatase inhibitor (AI) pill daily for 5 years. AI causes bone loss. Since I already have osteoporosis, I will be given an IV infusion of a bisphosphonate called Zometa every 6 months to minimize bone loss. However, side effects of bisphosphonates include atypical femoral fractures (AFF) and osteonecrosis of the jaw.

The risk of AFF is higher for Asian women, and that's what I'm most concerned about. I had a visit with Dr. Deborah Kado at Stanford yesterday. She said I should be more concerned with hip fracture than AFF. She recommended the following. I'll just paste what she entered in the visit notes.

Agree with recommendation for IV Zometa for 3-5 years, particularly if she is to start an AI. Given patient's body size and Asian heritage (that is associated with increased AFF risk per Kaiser Southern California data as well as Canadian data), may consider a slightly decreased dose of 3mg every 6 months instead of 4 mg (though there are no trial data to support this recommendation). Asian treating MD's from Taiwan, Toronto and Japan have recommended decreased bisphosphonate doses in Asian females because of the elevated AFF risk.
Vitamin D3 supplementation, 1,000-2,000 IU daily; may recheck level in about February (target is 30-50ng/mL of Vitamin D 25-hydroxy level
Calcium intake up to 1200 mg daily, preferable through dietary sources (see sources below)
Diet full of daily fresh fruits and vegetables
Work on balance daily, mindful of posture 3 times daily (see handout below)
Visit the dentist regularly, and floss daily
When move to Kaiser (possible plan), recommend Dr. Joan Lo to follow-up on osteoporosis clinical care.

I will probably take a break from Zometa after 5 years. My Vitamin D level last January was 32. The balance recommendation is probably so that I don't fall and break my hip. The dentist is for avoiding osteonecrosis of the jaw. #7 mentions Kaiser because I will have to switch insurance soon. More on that later.

Ring the Bell

2021-07-29T19:20:00.000-07:00

Today was my last day of radiation therapy. There is a tradition of ringing a bell to celebrate the end of treatment. But a survey found that those who rang the bell had more distressful memories of their treatment than those who did not.

I didn't plan to ring the bell but wanted to see if the bell sounds good. I took the clapper and tapped it very lightly against the bell, expecting a soft metallic sound. But it rang so loudly! I tried to stop the ringing, but it turns out it's true that you can't unring a bell.

Radiation Boost

2021-07-28T19:58:00.000-07:00

I'm into the sixth week of my radiation therapy. The final week is a radiation boost targeting the area where my tumor used to be. First they do imaging (one x-ray), then they aim the machine at my breast from two different directions for about 10 seconds each. Just like before, I have to take a deep breath and hold it for those 10 seconds.

This is what my skin looks like under my arm area.

I have grade 2 radiation dermatitis. That's a fancy term for radiation burn. Grading descriptions:

Grade 1 – Faint erythema or desquamation.
Grade 2 – Moderate to brisk erythema or patchy, moist desquamation confined to skin folds and creases. Moderate swelling.
Grade 3 – Confluent, moist desquamation greater than 1.5 cm diameter, which is not confined to the skin folds. Pitting edema (severe swelling).
Grade 4 – Skin necrosis or ulceration of full-thickness dermis (middle layer of skin).

The photo doesn't show the reddest areas. My chest was very red but is starting to fade now. The bottom part of my breast is very dark (hyperpigmentation). I could be back to grade 1 now. My skin is still peeling and itches occasionally but there is very little soreness. I couldn't sleep on my left side because it was painful. I haven't checked lately if it still hurts.

Today was treatment #29 out of 30. One more day left.

Balance Problems

2021-07-28T19:43:00.003-07:00

Lately I've noticed some unexpected stumbling. When I tried checking my balance by standing on one foot and walking heel to toe, I was a bit unsteady. When I tried it with my eyes closed, I couldn't do it at all. I don't know if this balance issue is caused by my cancer treatments. It could simply be due to aging.

I had my physical therapy appointment yesterday and received exercises for both balance and osteoporosis. I've decided not to work on my frozen shoulder anymore. I still can't raise my arm from the side, and there's been no improvement at all since last year. Maybe my shoulder will spontaneously go back to normal by itself in another year or two.

Two Days Off

2021-07-20T18:00:00.000-07:00

Yesterday I mentioned to one of the radiation therapists that the area under my arm has started hurting. She said the skin looks fine but asked if I wanted to see a nurse after my treatment. I said yes.

I waited a while for the nurse and was surprised that it was Dr. Horst who came. She reassured me that my skin looks good but offered to let me take the next two days off from treatment. I accepted. It doesn't hurt that much, but I'm afraid the pain will get worse or I could end up with open sores. The area under my arm is also starting to look burnt. I can't sleep on my left side because then my breast starts hurting. I'm relieved to get a two-day break.

I got clarification about the darkening of the skin on my back. I thought radiation was going through my heart and lungs to reach my back, but I noticed later that it's only the upper part of my back above where my heart is that's getting dark. Dr. Horst said the lymph nodes above my breast are being radiated, and because I have a smaller body, the beam is going all the way to my back. It doesn't go through my heart and lungs.

Crosshairs

2021-07-13T18:14:00.000-07:00

There are three crosshairs drawn on my chest with a Sharpie for alignment with the linear accelerator when I get my radiation treatment. The radiation techs place a clear sticker over the marks to protect them. But every week, usually on the weekend, at least one of the stickers falls off. It loses its stickiness from the water when I shower and the steroid cream and moisturizer I apply three times a day.

To redraw the the crosshair, the techs have to do an x-ray. I was concerned that I'm getting unnecessary x-rays every week. But I was told they have to do these x-rays anyway even if the sticker doesn't fall off. It's so that they can check that the crosshairs are still correct or something. Anyway, I'm no longer worried about the stickers coming off.

My irradiated skin has been red since Friday. Usually the redness goes away within hours of my treatment, but not anymore. The radiation oncologist and radiation techs said my skin looks good despite the redness. I get occasional itching and soreness and have to be more diligent about applying steroid cream and moisturizer.

Today's treatment was the end of the fourth week. Two more weeks to go. I hope my skin doesn't get worse.

Radiation Affecting My Back

2021-07-08T21:24:00.000-07:00

Saw my radiation oncologist today before my treatment. I mentioned to her that my back was turning dark. I wanted reassurance that it's normal. I've been moisturizing not just my front but also my back because I had heard that radiation affects the back also. Scary to think that radiation goes through my chest, then my heart and my lungs to burn the other side.

My sister Kit asked why they don't use a lead apron to protect the rest of my body from radiation. At my dentist they always use a lead apron before doing x-rays. It's because the radiation treatment is more targeted compared to the x-rays done at the dentist. It's actually recommended now not to use a lead apron because it might cause more harm.

Kit also said that topical steroids like the ones I'm using can cause thinning of the skin. I didn't know that. Mometasone furoate and triamcinolone are both class III potent steroids. This article said not to use it for more than three months. I plan to use it for two months (6 weeks radiation plus 2 weeks post-treatment for delayed reactions) and should be good.