A Pastor's Cancer Diary

April 21, 2026 - I Rang the Bell Yesterday

2026-04-21T16:03:00.002-04:00

Yesterday, I rang the bell.

Anyone who's experienced protracted cancer therapy, like chemo or radiation, knows what that means. It means the series of treatments has ended.

This was my first time ringing the bell. When I had chemotherapy for non-Hodgkin lymphoma years ago, I was the last person in the infusion suite (my drip was VERY slow, taking more than 6 hours). By that late hour it was just me and a weary nurse who was probably eager to get home after a long day, so I didn't know such jubilation was even an option.

Yesterday it was still just me representing my tribe, but there were other Johns Hopkins patients and staffers hanging around the radiation oncology suite. So there were a few others to cheer and applaud.

The pealing bell serves as inspiration to the other patients, reminding them there's an end in sight. I was happy to take the rubber mallet in hand.

My radiation technician Kaitlyn told me I could hit the bell with either the mallet head or the wooden handle. The handle is harder, she pointed out, so it makes a louder sound.

I went for the handle.

I've still got a lot ahead of me. After my bell-ringing, I met with Marsha, the very helpful nurse in Dr. Quon's office, who reminded me of something I'd already heard: that the side effects of radiation continue to get progressively worse for a while after treatments have ended.

A day after my final tanning session in the Weinberg Building basement, I have no reason to doubt her. The painful radiation burns (like a severe sunburn) circling my neck, as well as my continued swallowing difficulties, are an indication of that. But it's a milestone, and I'm happy to have passed it by.

Marsha gave me a long list of step-down protocols regarding medications as well as a series of exercises to begin once I'm healed up, to keep my facial and neck muscles limber.

She told me I've been a model patient, keeping careful track of the intricate instructions related to medication dosages and homecare procedures. "I didn't have to yell at you once -- and some patients I have to yell at a lot," she said with a smile. (Marsha's such a kind person, I can't imagine her yelling at anyone, but I suppose it's in the eye of the beholder.)

I told her that's no great distinction in my case. It's just that I've been a cancer patient so long, I've long since gone pro.

I won't see Dr. Quon again for six weeks. My follow-up with Dr. Mady, the surgeon, is not until September.

Once I feel a little better, I'll check back with Dr. Hillel to see what can be done to improve my voice -- such as vocal cord implant surgery or speech therapy.

One thing at a time. Healing is on the agenda just now.

In the treatment room where Marsha and I met, there's a framed collection of "Words of Wisdom from Head and Neck Cancer Survivors." Here are a few highlights:

Accept all the help you can.

This is your JOB now!!

Your caregiver is your hero.

Don't hold back the tears. They will wash you. They will cleanse you.

Strength doesn't come from what you can do. It comes from overcoming the things you thought you couldn't do.

Believe!! in your treatment plan.

Cancer teaches you not to sweat the small stuff.

Great things never came from comfort.

You'll meet some wonderful people.

PERSEVERE.

Take it from those anonymous sages of the radiation suite. They know.

March 24, 2026 -- Another Day, Another Beam

2026-03-24T19:43:00.001-04:00

Hello, friends. I don't have any medical news to report. But I did think some of you may be interested in knowing what it feels like to get radiation beam therapy,

The short answer is: nothing. Going under the radiation therapy device is much like getting an x-ray. In many cases, I'm told, it is an x-ray. The radiation beams are delivered in far higher concentrations, though, than any you or I ever received to check for pneumonia or a broken arm.

Whether my particular treatment is souped-up x-rays or some other kind of radiation such as proton therapy, I couldn't tell you. That's above my pay grade.

Stuart, a friend from our church -- a nuclear physicist who travels all over the world consulting on the installation of machines like the one used on me -- could no doubt explain it to me. Maybe I'll ask him about it the next time I see him.

What I do know is that, through some high-tech wizardry, the radiation beam is carefully shaped to wrap around my larynx and esophagus -- focusing on tissues right around those vital structures, where microscopic thyroid-cancer cells may linger like stubborn members of the Nazi Party pretending to be French peasants. This is after Dr. Lelia Mady, my surgeon, has already removed all the tumors she could see -- both through computer imagery and through her eyeglass-magnifying gizmo ("eyeglass-magnifying gizmo" is a technical term).

Cancer cells are fast-growing, and radiation beams tend to fry fast-growing cells before any other kind. That's the theory behind radiation therapy, and is the effect Dr. Harry Quon, my radiation oncologist, is counting on. He's very familiar with the just-enough-and-no-more sort of calculations that tell him when, exactly, to instruct the members of his team sitting in the radiation-room cockpit to cease fire. (Pro tip: it's not "when you see the whites of their eyes." It's more like "survival of the driest.")

The only hitch is that there are other fast-growing cells in the neck area that aren't cancerous. These tend to be moist tissues like mucous membranes, salivary glands and the cells that line the esophagus. That's why I've been experiencing certain well-predicted side effects like dry mouth and a severe throat pain. These symptoms are being treated with medications, including some pretty hefty doses of pain medicine. I've been told the side effects are likely to get progressively worse as the weeks go on. The hope is that these collaterally-damaged cells will recover in time, although no one's issued any promises on that score.

When I was a kid, I knew a man who'd been treated for thyroid cancer. He used to walk around with a little brown bottle in his hip pocket, from which he'd tipple from time to time. He frequently assured anyone in the vicinity that it was only water in the bottle, and that he had to keep his mouth moist to compensate for underperforming salivary glands. That was decades before today's highly-targeted, computer-guided radiation therapies, so I'm hopeful his fate won't be mine. (Even if it is, "hydrating" is a well-accepted thing these days, so I don't imagine it would be all that awkward.)

Here's what happens on my daily trips to the radiation suite. It's remarkably consistent from day to day. In fact, it calls to mind that old Bill Murray movie, Groundhog Day. Show up at exactly the same time, at exactly the same place and go through exactly the same routine in the presence of the same people. Unlike the movie, there's no life lesson to be learned from all the repetition -- or if there is, I haven't picked up on it yet.

I make the 10-minute drive to the Johns Hopkins main hospital, pull into a basement parking garage underneath the Sidney Kimmel Cancer Center, and aim for a row of reserved parking places marked "Radiation Oncology Patients." (It's an exclusive club I belong to.) I ride the elevator down to the members-only level, the second sub-basement where radiation oncology machines are safely housed. I've even got a frequent-traveler card that lets me skip the line at check-in. I just wave it under the scanner, give a friendly nod to the receptionist and make my own way back into the radiation-treatment area.

Before I enter the waiting room, I step into a little changing-room cubicle, where I remove my shirt and don a hospital gown that's waiting for me there. Other patients have to remove more clothing than that, but since the focus is on my neck, that's all that's required of me.

I take my place in the waiting room. My fellow patients are mostly the same people I see every day. We're on the same schedule. Like daily commuters on our way into the city, we recognize and nod to each other.

The day of my first treatment, I heard a bell ring somewhere off in the distance, like an old-fashioned ship's bell. I smiled to myself when I heard it. I learned, back in my chemo days, that in Cancer World this is the universal sign that an oncology patient has gotten his or her wings (has completed the treatment series, in other words). I haven't heard the bell ring since, but with extended treatment schedules like the ones we're all on, I suppose that takes time.

When it's my turn, a technician steps in and asks for my frequent-traveler card. He or she goes back to the treatment area, and a few minutes later beckons me to come on back. In the interval, I presume someone has scanned my card again, so the dosimetrist (technical term: technician who measures out the radiation dose) uses my coordinates and not someone else's. They also double up with the familiar hospital name-and-birthdate check, just to make sure.

Back in the treatment room, a couple nurses or technicians help me up onto the narrow table, on which I lie back with my head on a little plastic headrest. I don't breathe so well lying flat on my back (due to the large abdominal hematoma scar-tissue mass that lifts up my diaphragm, compressing my right lung), so I've pre-arranged for an oxygen tube and nasal cannula. It's a big help, especially after I'm lying there immobilized. Next, they lower the custom-made plastic-mesh mask down over my head and shoulders and use it to literally bolt me down to the table so I can't move my head or neck.

Then, everyone vamooses. It's just me and my machine. Pop music is playing softly through the sound system. Today's selection from the radiation-room jukebox is, surreally, Ghost Riders in the Sky.

Lying there on the table, I can see out through the little holes in my mask. I watch the different parts of the radiation machine slowly rotate around my head. The largest piece, I know, delivers the radiation beam, guided somehow by green laser lines. Another, on the opposite side of my body, receives it. I'm not sure what the other two do, but I think they have something to do with shaping the beam in 3-dimensional space. It's a whole lot more complex than the flat rectangle of photographic film that was the target of my grandfather's diagnostic chest x-ray (did I tell you my grandfather was a doctor?).

That's about it. The machine parts stop whirring and rotating, the heavy lead-lined door to the room opens back up and the team comes back in to unbolt me and set me free. "See you tomorrow," one of them says, cheerily. I haven't heard anyone say "Same bat-time, same bat-channel," yet -- but they're all too young to get the boomer cultural reference.

If everything's running smoothly and there isn't a back-up, I can be in and out of there in 15 minutes.

As for tomorrow -- well, it will be Groundhog Day again, won't it?

March 6, 2026 – On the Table

2026-03-06T20:05:00.004-05:00

My machine, "Versa 2"

Today was my third daily radiation treatment – out of 30 or so yet to come. Already there’s a familiarity to it – even as I lie on the table with my head and neck immobilized by a custom-made plastic-mesh mask. Even listening to the nurses and technicians cheerily say “see you tomorrow” when it's over. (Well, they didn’t say it today, because all of us in radiation-land take the weekend off.)

Lots of people, I’m told, dread the mask, but I’ve found it to be OK – once you get used to the idea that the purpose is to keep you from moving while the radiation-beam emitting device is slowly circling your body. I do want to stay absolutely still, believe me – so nothing gets irradiated that’s not meant to get irradiated. The mask is a comfort in that sense. It’s a benevolent imprisonment. It takes the pressure off. All I need do is lie there. The fit is so accurate, it makes me feel enfolded and protected. By what, I’m not quite sure. Maybe God.

Today I found the radiation table to be an excellent place to pray. There are no distractions during those several minutes, other than the whirring and beeping of the machine. You can see the machine going through its motions through the holes in the plastic mesh – kind of like a fencer’s mask, I expect. And once you’re bolted down to the table, there’s nothing you can do about it anyhow.

I just prayed a simple prayer for healing. Because that’s what this is all about. I felt love beaming towards me, along with the protons or whatever else is coming my way, directed at the little sharpied “X” marks on the neck portion of the mask. The technicians in the control room are also using a CT scan built into the machine to image the structures of my neck in real time, so they can precisely direct the beam.

My mask

I’m alone during the 5 minutes or so of therapy, as the nurses or technicians or whoever they are have taken refuge behind thick layers of lead lining the walls of the treatment room. As I entered the room, I noticed a sliding door that’s about the width of five ordinary doors layered together – no doubt, also lined with lead. Once that ponderous door’s slid shut, they can see me through a camera and converse with me by microphone.

Earlier today I had a teleconference appointment with Dr. Douglas Ball, my endocrinologist. Most of my recent consultations have been with people from the fields of surgery or oncology, but I realized Dr. Ball has been closely tracking it all. It’s a team effort. He told me a few things I hadn’t fully comprehended from earlier conversations.

He told me that Dr. Lelia Mady, my surgeon, had interrupted the operation to consult with him by phone. She explained to him how difficult it was to remove all the thyroid-cancer tissue. The only way to be sure of removing it all, she told him, would be to remove a portion of my trachea and esophagus, then pull up on the remaining part of the esophagus to re-attach it. That would result in my stomach being pulled upwards as well. They agreed that this radical approach was not called for, and that it would be better to stop where she was, sew me up and pursue radiation therapy directed at the surface of the trachea and esophagus. The goal, of course, is to irradiate the cancer cells, both those in close proximity to those structures and those that may have infiltrated their upper layers, while not going so deep that the radiation damages healthy tissue. Making sure that doesn’t happen is Dr. Harry Quon’s (my radiation oncologist’s) department – and I feel confident that, in him, I’ve got one of the best in the world looking after that.

Something else Dr. Ball told me also instilled confidence. The meeting of the tumor board that signed off on my neck-surgery plan – in which he participated – consisted of no fewer than 20 Johns Hopkins doctors. That’s a lot of brain power gathered in one place. I’m glad to get the benefit of it.

So now I’ve got a little sabbath ahead of me – Saturday and Sunday without the short daily drive to the Weinberg Building of the Sidney Kimmel Cancer Center at Johns Hopkins. But Monday will come soon enough. And I'll be looking out for the radiation side effects soon to come.

February 22, 2026 - Still an Agent

2026-02-22T16:10:00.000-05:00

For anyone who's keeping track of this cancer journey of mine -- that's (thankfully) been stalled for many years of remission -- I'm now back in the active mode. I'm in the between-time, neck surgery now behind me and radiation therapy due to begin in just over a week.

I've been dutifully loading up on the anti-seizure medicine, gabapentin. Once I reach therapeutic level, it's supposed to have a salutary effect on the pain that often accompanies radiation therapy, building slowly as week succeeds week. The opiates will always be there as a pain-control strategy of last resort, but my radiologist is hopeful we can avoid them as long as possible, in order to stave off addiction.

Today I came across an online essay by a survivor named Hans Casteels. It's about the cancer survivor experience. It sounds true to life. Here's an excerpt:

"Alright, let’s not kid ourselves. The most existentially important thing for a person with cancer is not hope. It is not courage. It is not resilience. It is not even survival, which is awkward, because survival is the thing everyone else becomes absolutely obsessed with, like it is the only metric that matters, the only acceptable outcome, the only box that must be ticked before you are allowed to have an opinion about anything ever again. The real prize, the thing that sits underneath all of that Hallmark vocabulary, is agency. Control. The stubborn, irrational, deeply human insistence that you are still the one holding the pen, even if the paper is on fire and someone in a white coat keeps trying to take it out of your hand.

Cancer does not just attack cells. That is the PR version. Cancer attacks narrative. It storms into your life and immediately rewrites the plot without consulting you. You were minding your own business, worrying about normal things like whether your password was strong enough or whether the pizza place had started using cheaper cheese, and suddenly you are rebranded as 'a cancer patient,' which is a role that comes with a pre written script and very limited creative input...."

I can relate to this. When I pull up on my laptop, these days, a week's worth of online calendar and survey the colored blocks, the majority of them are now medical appointments. And that's before I've entered into the calendar the daily radiology sessions due to begin the first week of March.

Hans continues...

"And somewhere in the middle of all this, something subtle and brutal happens. You stop being a person who has cancer and start being cancer who has a person....

Everyone means well. That is the most sinister part. The system is designed to help you, save you, optimize you, extend you. But in the process, it often forgets to ask the one question that actually matters: what do you want to do with the life you are allegedly trying to preserve? Not 'what treatment do you want,' which is the fake version of agency. That is like asking someone on a sinking ship whether they prefer the red or blue life jacket. The real question is much more uncomfortable, which is why it almost never gets asked: what still makes your life feel like yours?...."

For me, at the moment, it's writing. Not just this blog, but the stuff I'm doing on my Substack, Curated Sermon Illustrations.

Reflecting on that work, I've started calling myself a holy ghostwriter -- tapping my personal sermon-illustrations database to provide a daily dose of metaphor, story, quotation or poetry for the benefit of colleagues still engaged in weekly preaching. It's a practical application of the system I promote in my recently-published book, Illuminating Sermons: Curating Illustrations that Inspire.

Because I can write the daily Substack posts in advance, it's well-suited to navigating the peaks and valleys of the cancer experience. Substack will obediently churn out my pre-written posts on a daily basis, even if I reach the point where the radiation has laid me so low that I don't feel like writing anything for a while.

February 12, 2026 — Radiation on the Horizon

2026-02-12T17:23:00.004-05:00

Today Claire and I went in for a consultation with Dr. Harry Quon, Associate Professor of Radiation Oncology and Molecular Radiation Sciences at Johns Hopkins Medical School. After performing the through-the-nostril scoping of my vocal cord area that I’m beginning to think is obligatory for laryngology patients, he shared some details about what’s ahead for my radiation treatments.

This Tuesday I’ll go in for a preparatory session with him, in which he’ll craft a custom plastic mask that conforms to the shape of my head. They’ll put that device on me each time I come in for a treatment. The purpose of the mask is to immobilize my head during the few minutes the radiation beam is being directed at my neck. Precise targeting of the beam prevents damage to other nearby tissues.

The doctor drew us a little diagram of the human neck. He told us he'll be directing the beam towards the space where the thyroid gland (for people who still have them) wraps around the front of the larynx. The purpose is to stop any thyroid-cancer cells that may still be remaining after the surgery from invading my larynx. The outer surface of the larynx will be irradiated along with other nearby tissue, but Dr. Quon's goal is to make that irradiated area as shallow as possible, so as not to damage the larynx.

With respect to the mask, he asked me if I have any problems with claustrophobia, and I was happy to be able to tell him that I don’t think I do. We’ll see.

Dr. Quon explained that, although the radiation sessions are brief, they’ll have a cumulative effect on me including especially fatigue, but also the likelihood of sunburn-like irritation to the skin of my neck. Some patients experience just redness, others sores and even blisters. Pain can become a growing issue over time, but they have ways of managing that. Some patients experience difficulty swallowing during the last weeks of treatment, but that side effect usually goes away once treatment is ended.

When I next see him, he’ll start me on a medicine called gabapentin. The primary use of gabapentin is as an anti-seizure medication, but that’s not why he wants me to take it. Apparently, it has an off-label prophylactic benefit of preventing nerve pain, if it’s started a couple weeks before radiation treatments begin.

He observed that my surgical incision is healing nicely -- which is good because radiation therapy typically results in a hardening of the skin in areas where the beam is directed. Towards the end of a series of treatments, patients sometimes need a massage-like form of physical therapy focused on breaking up hard masses that form under the skin.

My radiation treatments will probably begin in the first week of March. Fifteen minutes a day, five days a week. I should be able to drive myself there and back, the doctor says.

After the consultation was over, Claire suggested that we walk to one of her favorite places in the hospital, the larger-than-life marble statue of Jesus located in the atrium of the original hospital building. It’s called “Christus Consolator” by some, and “the Divine Healer” by others. Claire has memories of going to see it while visiting the hospital with her mother, who worked there for decades as a nurse. As sculptures go, it’s remarkably beautiful. Its location at what used to be the main entrance must have been quite moving to patients, back in the day. Because most people enter the sprawling hospital complex these days through other entrances, it's no longer something a whole lot of people get to see -- but it’s certainly worth a look.

Here’s a write-up on the statue I found online:

“Baltimore society was shocked when the university opened in 1876 with no religious affiliation, as was customary for the time, prompting several news publications to question what kind of university it would become. At the hospital’s opening 13 years later, university President Daniel Gilman avoided any similar criticism by asking for ‘some friend of this hospital’ to fund the installation of a replica of the Christus Consolator statue in Copenhagen.

A close friend of Mr. Johns Hopkins, [local philanthropist William Wallace] Spence donated the funds to complete the statue — referenced by many as the “Divine Healer” — and it was unveiled on Oct. 14, 1896.”

It seemed a fitting detour to make as we’re on the threshold of this new healing adventure.

February 9, 2026 — Surgery Recap

2026-02-09T20:38:00.001-05:00

Today, Claire and I went in for a consultation with my surgeon, Dr. Lelia Mady. We’d received a brief report from her on January 21, the day of the surgery, but this was a time to get more details.

Dr. Mady explained that she found the surgery to be more difficult than expected, due to extensive scar tissue in my neck from my two previous thyroid-cancer surgeries. Her written report references “numerous challenges which increased the complexity, time, and risk of the procedures.” Her report also refers to “prior endocrine oncologic surgery as well as chemotherapy, radioactive iodine, and revision neck surgery which produced a tremendous amount of fibrosis in the neck and subsequent loss of normal tissue planes. The patient also had exceptionally challenging tumors involving multiple anatomically complex subsites of the neck. All of these factors together made the dissection and identification of critical structures more challenging than normal.”

She removed a large thyroid cancer tumor that had so thoroughly enveloped my recurrent laryngeal nerve (the one whose dysfunction has caused the paralysis of my left vocal cord) that it was impossible to save the nerve. Dr. Mady said she couldn’t even see the nerve, and it was probably removed along with the tumor. Bottom line is that there’s no hope of restoring healthy functioning of the paralyzed left vocal cord.

She explained that it was difficult to separate the tumor from my carotid artery — which the tumor had also wrapped around — but that she was eventually able to do that without damaging the artery.

She found thyroid cancer tumors that were in direct contact with the larynx, trachea and esophagus. In order to avoid damaging these essential structures, it was impossible to shave enough marginal tissue from those structures for testing to confirm that all the cancer has been removed. Dr. Mady explained that it’s likely that some microscopic thyroid cancer cells remain. Unless there’s something done to address this problem, there’s the possibility of the cancer invading the larynx, trachea and/or esophagus eventually.

The two treatment choices are watchful waiting and radiation beam therapy. She didn't mention the possibility of my swallowing another radioactive iodine pill, so I suppose that's off the table. Dr. Mady strongly recommends radiation because, if we were to wait and discover that the cancer had subsequently invaded the larynx, trachea and/or the esophagus, I could end up having far more serious problems.

We agreed that radiation is the way to go. She told me I could expect a call from the Johns Hopkins radiation oncology department to schedule an appointment with one of their specialists. I’ll also be having a consultation with Dr. Douglas Ball, my endocrinologist.

Dr. Mady shared a little about what to expect from the radiation treatments. For a period of 5 or 6 weeks, I’ll go in daily to the Sidney Kimmel Comprehensive Cancer Center in the Weinberg Building at the Johns Hopkins Hospital main campus for brief, daily radiation treatments to my neck. There are potential side effects from the radiation that the radiation oncologist will explain to me, including toughening of the tissues in my neck and superficial, sunburn-like burns to the exterior of my neck. They’ll need to monitor my carotid arteries carefully to make sure they retain their flexibility. For all the downsides of this approach, she thinks radiation therapy does offer the best hope of stopping the cancer’s advance.

Not the news we’d hoped for, but it’s not a huge surprise. I’ll await a call from the radiation oncology department to schedule that consultation and get the radiation therapy appointments onto the calendar.

It’s fortunate that we live here in Baltimore City, just a ten-minute drive away from this world-class cancer treatment facility. I know I’ll be receiving the best care available.

More to come, as I learn more about what’s ahead...

February 7, 2026 — Normal Inspiration

2026-02-07T23:52:00.007-05:00

It’s time for an update.

On February 3, I went in to see Dr. Alexander Hillel at the Johns Hopkins Medicine Greenspring Campus — in Timonium, just north of the city — for the injection into my paralyzed left vocal cord. It was not the most pleasant procedure, to say the least. I was conscious the whole time, so I’d be able to move my vocal cords on command.

I was seated in something like a dentist’s chair. Dr. Hillel’s resident inserted the tiny camera, at the end of a fiber-optic tube, into my nostril and down into the back of my throat. Then, Dr. Hillel sprayed lidocaine anesthetic into my throat — bitter-tasting stuff that caused me to gag. (From what I’d read during some internet research I’d done a little earlier, I’d learned that the gagging is part of the procedure — that reflex spreads the lidocaine all over the vocal cords and surrounding tissues.)

After waiting a few moments for the anesthetic to do its numbing work, Dr. Hillel had me stick my tongue out. He grasped it firmly using a square of gauze and pulled it straight out. Holding my tongue in one hand and a special curved hypodermic needle in the other, and guided by the tiny camera, he asked me to say “eee-eee-eee” to close the vocal cords as much as possible. Then he injected the collagen-like material into my vocal cord in a matter of seconds.

The pain was well-controlled, and it was all over very quickly. (This is where you want a highly experienced doctor doing this procedure — I expect Dr. Hillel has done hundreds of them.)

The doctor asked me if I wanted to see a video replay. He showed me on a screen exactly what he’d seen as he performed the injection. I could see the needle penetrate my vocal cord, causing it to plump up before my very eyes.

Curing the paralysis was not the purpose of the procedure. That will only happen if the damaged nerve eventually recovers, which is anything but certain. The reason for plumping up the paralyzed vocal cord is to move its leading edge to the center of the voicebox, so the healthy vocal cord is able to touch it. It’s the opening and closing of the vocal cords, and their vibration in sync with one another, that causes speech.

It’s kind of like a pair of theater curtains in a traditional proscenium arch. The curtains open and close as a stagehand pulls on a rope. In the closed position, the two curtains meet neatly in the center. But if one of the curtains is damaged, and the pull-rope controlling it is stuck in the half-open position, the curtains can’t do their job.

An obvious solution would be to repair the jammed control mechanism (which is analogous to restoring the nerve controlling the vocal cord). But that’s easier said than done. The only other option, in this analogy, is to sew some more fabric onto the curtain’s leading edge, extending it to the center, so the functioning curtain can meet it.

After a few minutes of observation — to make sure my airway remained open — I was cleared for Claire to drive me back home. I was warned to expect a sore throat, once the anesthetic wore off, and to rest my voice for the next day or so.

The result is that I can now speak without the laryngitis-like breathiness I’ve had ever since my neck surgery. My voice still sounds kind of gravelly — but clearly the vocal cords are now meeting in the middle, because I can produce enough volume for someone to hear me from more than a few paces away.

This is considered a temporary solution. The body will absorb the filler material eventually, probably after a few months, and the breathy voice will return. We’ll reassess options at that time. Another temporary injection is a possibility, as is a permanent vocal cord implant — a more involved surgical procedure, done through a small incision in the neck rather than by going down the throat.

As I met Dr. Hillel that day, he drew my attention to a framed poster on the procedure-room wall, with photos of vocal cords in various medical scenarios. One of the photos depicted a single paralyzed vocal cord, my situation. The first photo of the display, though, was captioned, “Normal inspiration.”

For a preacher, “inspiration” has a different meaning, having to do with the presence of the Holy Spirit. The Greek word for “spirit” also means “breath” — so, in medical terms, normal inspiration has no theological significance. It simply means the air is moving through the vocal cords normally.

I’m glad to know I left that procedure-room more inspired than when I went in.

On Monday, Claire and I have a consultation with Dr. Mady, my surgeon. I'm expecting she'll interpret for us what the detailed pathology reports — which are now in — are saying. We may also discuss next steps for dealing with the thyroid cancer. Further watchful waiting is always a possibility, as is a repeat of the radioactive-iodine pill I last swallowed in 2011. Targeted radiation-beam therapy may also be in my future, assuming they can find something large enough to target.

January 30, 2026 - Laryngologist

2026-01-30T10:48:00.008-05:00

It’s been a busy couple of days with things medical, so let me bring you up to date.

Yesterday morning, Claire and I went to one of Dr. Mady’s offices, to have a nurse remove the surgical drain. I felt much better instantly, having gotten rid of that little soft-plastic millstone around the neck.

The removal itself went very smoothly, but the nurse was concerned about the amount of swelling and inflammation both above and below the surgical dressing that formed a tight collar on the front side of my neck. She called in one of Dr. Mady’s residents who happened to be on site. She took a look at it and suggested we drive immediately from the Johns Hopkins Medicine Greenspring location, north of Baltimore, to the outpatient center at the main Johns Hopkins Hospital. Dr. Mady was seeing patients there that day, she explained, and she thought she’d want to see me immediately.

So that’s what we did. Dr. Mady saw me just after noon. She and her resident carefully removed the tightly-stretched dressing. Then they gently poked and prodded my swollen neck. She explained that she wanted to try to remove some of the accumulated fluid. They numbed my skin with lidocaine and Dr. Mady used an ultrasound machine to guide the needle insertion. She wasn’t able to remove much fluid, but she said every bit helps. She also prescribed an antibiotic for the infection.

Having heard me speak with my hoarse, breathy voice — now over a week following the surgery — Dr. Mady asked if I’d be willing to see a laryngologist sooner than my February 3 scheduled appointment with Dr Hillel.

So, first thing this morning, while it was still dark, I drove back through the ice-choked Baltimore streets to that same location, for an appointment with Dr. Anirudh Saraswathula. He used the same sort of through-the-nose camera device Dr. Mady had used, pre-surgery, to examine my vocal cords. I could see on the screen the same problem she’d identified earlier: my paralyzed left vocal cord remains rigid, while the right vocal cord moves freely. (Take a look at this image of someone else’s vocal cords I found online; it looks very similar to what I saw on the screen.)

Speech happens when the vocal cords move back and forth, opening to let air through and then closing to cut off the air flow. My problem is that, because the paralyzed vocal cord is stuck in the open position, the two vocal cords no longer meet in the middle. The air passing through the now-constant opening between them is what gives my voice its breathy character.

Dr. Saraswathula explained that, based on what he’d read in my chart about my surgery, the thyroid-cancer tumor had been “deeply involved” with the nerve. Dr. Mady saved the nerve, but it remains to be seen how much it will recover from the damage the tumor did to it. That process of recovery will take several months at least, and it’s impossible to say how much (or, indeed, if any) improvement in my voice will occur.

He suggested, and I agreed to, a procedure whereby a bulkening agent — similar, he said, to what fashion models use to enlarge their lips — will be injected into my paralyzed vocal cord, so the gap between the two will close when the healthy vocal cord moves towards it. The effect will last several months. This won’t interfere with whatever nerve recovery may naturally take place during that time, and may help me speak more clearly in the meantime. If it turns out, down the road, that there’s little or no lasting improvement to my recurrent laryngeal nerve’s function, they’ll then have the option of inserting a permanent implant into the paralyzed vocal cord.

I'll be awake for that procedure, which takes place through the mouth with the vocal cords numbed by lidocaine spray. It will be helpful for me to be awake, so the doctor will be able to observe the vocal cords as I speak.

So, that’s what’s ahead. My appointment with Dr. Hillel at the Greenspring location is still on the books for February 3. Dr. Saraswathula will consult with Dr. Hillel to see if perhaps that doctor could give me the temporary injection in the office that same day.

He also suggested I see a speech therapist. So that will be in my future as well.

January 24, 2026 - Softspoken

2026-01-24T11:21:00.001-05:00

I've been home from Johns Hopkins Hospital for a couple of days now. It's a slow recovery from surgery, but that's what we expected. I was discharged with a surgical drain still in, so Claire and I are dealing with that at home. So far, so good with keeping it emptied and logging how much fluid it produces.

Once the drain is no longer draining, the plan is for us to stop by Dr. Leila Mady's office so a nurse can remove it. With a big multi-day snowstorm on the horizon, and with that office being closed over the weekend, that could be delayed a bit.

I've got an appointment to see Dr. Alexander Hillel, a Johns Hopkins laryngologist, in early February, and to have a follow-up visit with Dr. Mady a few days after that.

I didn't even know there was such a thing as a laryngologist until now. Dr. Mady is an otolaryngologist (what they used to call an ear, nose and throat surgeon), and Dr. Hillel is even more specialized than that. The Johns Hopkins Medicine website says he focuses on "the medical and surgical management of patients who have scar tissue blocking their larynx and/or trachea, a condition called laryngotracheal stenosis." There's going to be a three-way conversation among those two specialists and Dr. Douglas Ball, my endocrinologist, about interventions to prevent the further spread of thyroid cancer, while preserving what's left of my ability to speak.

Before I was discharged from the hospital, Dr. Mady stopped by my room to share a post-game analysis. She told me she removed three small thyroid cancer tumors, including the one that evidently crushed my recurrent laryngeal nerve -- the tiny nerve that controls my paralyzed vocal cord. She wasn't able to get to all the thyroid-cancer tissue because the most troublesome tumor was located right up against the larynx (the "voicebox" that contains the vocal cords), not far from the trachea (windpipe). She's not sure whether the thyroid cancer has actually invaded either of those vital structures, but she couldn't remove any marginal tissue for biopsy, to rule that out.

It remains to be seen whether the damaged nerve can recover any of its function. At the moment, my voice is a little worse than it was pre-surgery. It's got a whispery quality, as before, but now I have the sensation that, after speaking a few words, I'm running out of air. I'm not actually running out of air (my breathing isn't any worse than before). It has to do with the way my vocal cords modify the airflow for speech. I've lost my "outdoor voice," the ability to project -- ironic, for someone like myself who used to teach public speaking to seminary students.

It's looking more and more like my decision to focus my professional efforts on writing -- sharing preaching material with colleagues on my new Substack, Curated Sermon Illustrations -- has been the right call. (Does that make me a holy ghostwriter?)

Possible future medical interventions, Dr. Mady tells me, include (1) an injection of collagen or similar material to bulk up my paralyzed vocal cord so it can mirror the vibrations of my healthy vocal cord, (2) targeted radiation therapy, (3) a possible repeat of the radioactive iodine pill I swallowed back in 2011, not long after my thyroid was removed, or (4) a relatively new chemotherapy medication. Speech therapy may also be worth a try.

But at the moment, job one is recovery from surgery, which starts with waiting out the imminent snowmageddon. I've been binge-watching old episodes of The West Wing on Netflix and wishing Martin Sheen could really be President.

January 16, 2026 - Surgery: What's Ahead

2026-01-16T23:07:00.002-05:00

Yesterday Claire and I spoke via teleconference with Dr. Leila Mady, who’s going to perform my neck surgery at the main Johns Hopkins Hospital on January 21. Her answers to my questions were reassuring and to the point.

I asked if my incision would be the same size and in the same location as my previous two neck surgeries (my 2011 total thyroidectomy and my 2018 neck dissection with lymph node removal). Yes, her aim is to trace the same incision line as the previous surgeries — although, if she encounters a lot of scar tissue, that may not be possible.

The new incision will likely be smaller and more central in location — so the best case scenario is that it will follow part of the existing scar line and will require no surgical drains (as my neck dissection surgery did, which was what kept me in the hospital for several days afterwards).

I asked about pathology — whether there would be on-the-spot analysis of tissue samples or whether I would have to wait for results. The answer to that one is “both.” A pathologist will examine a “frozen section” under a microscope while I’m still on the operating table. The pathologist won’t be in the operating room, but will be nearby — two floors removed, in the same building on the sprawling hospital campus. Additional tissue samples will be subject to a more detailed analysis. Those results will take a week or more to come back.

Will Dr. Mady remove any marginal tissue, beyond the tumor itself? That depends on what she finds, and what the frozen-section pathology test reveals. She explained that her goal is to get all the thyroid cancer tissue she can find, but this tumor is located right up against the larynx. There’s not much she can do to remove marginal tissue on that side, for fear of damaging the larynx.

How long will the surgery last? Two to three hours, most likely — which includes the entire time I’ll be in the operating room, but excludes recovery-room time.

How long will it take for me to recover? Due to my respiratory issues, I’ll probably stay in the hospital overnight, but if all is well the next day, I’ll be able to go home then. My recovery will continue at home for a couple weeks after that, with a prohibition on lifting anything heavier than five pounds.

I asked if I could expect to regain any of the vocal capacity I’ve lost (currently I have a laryngitis-like hoarseness that prevents me from doing much public speaking). Dr. Mady was a little more encouraging than she was the first time I asked her that question. There’s no way to tell until afterwards if my voice quality will improve, she explained. If the tumor comes out easily, it may be that the nerve that controls my vocal cord can be preserved. In that case, it’s possible I could eventually see some improved speaking ability.

I also learned there’s another treatment that could improve my speaking. After I’m fully recovered from the surgery, I could undergo a procedure called vocal fold injection augmentation (“vocal fold” is another word for vocal cord). In that procedure, Dr. Mady would insert a needle into my neck, under local anesthesia, to bulk up the paralyzed vocal cord with a filler substance (fat, collagen or something similar). During that procedure, she would keep an eye on the vocal cord through a special scope, so she can precisely guide the needle. The added bulk would reposition the affected vocal cord so it’s closer to the middle of the voice box. There it could pick up some vibrations from the healthy vocal cord, improving speech quality.

So that’s the road ahead. I’m feeling pretty good about it (there’s something to be said for being an operating-room veteran). There’s no question but that the tumor must come out, to avoid further damage to other structures in my neck, like the larynx or trachea. I know that post-surgery improvement in speaking ability after this kind of surgery is uncommon but not unheard of. I’m not counting on any improvement, but if that should happen, I’ll rejoice.

December 21, 2025 -- A Date for Surgery

2025-12-21T18:48:00.001-05:00

This past Friday, December 19th, I learned that the tumor board at Johns Hopkins Hospital is recommending that I proceed with surgery. This is to remove the recurrent thyroid cancer tumor that's causing paralysis of one of my vocal cords. Typically, that happens because the growing tumor is exerting pressure on the laryngeal nerve. That nerve controls movements of the vocal cord.

When I met with Dr. Leila Mady, the Johns Hopkins otolaryngologist who will be performing the surgery, she delivered the unwelcome news that this surgery probably won't improve my recently-acquired vocal hoarseness (the laryngeal nerve is a fragile structure and may already be permanently damaged). But the surgery is necessary because the tumor could continue to grow, eventually invading my larynx or trachea.

The surgery is scheduled for a month from now -- Wednesday, January 21st. Between now and then, I get to enjoy Christmas and New Year's with the family. Both our kids, Benjamin and Ania, will be here in Baltimore, as well as Benj's wife Dhana and their infant son Isaac. (Yes, it's baby's first Christmas for our one and only grandchild, who is of course the most photogenic baby in history.) My brothers Jim and Dave will also be here, so we'll have a full house for the big day.

After Christmas, I'll have a number of routine pre-operative tests to go through -- all standard stuff for anyone preparing to go under general anesthesia.

Here's a photo of our Christmas tree where we'll gather on the big day. Hope your holidays are very special, as ours certainly will be this year!

December 11, 2025 – Here We Go Again

2025-12-11T22:35:00.000-05:00

Things have been blessedly quiet on the cancer front for 5 years or so – hence, no blog posts.

Until now.

My non-Hodgkin lymphoma has been quiet for over 15 years, and my last couple of cystoscopies for bladder cancer have shown no recurrence. Not so with my thyroid cancer. After several years of no activity from a number of tiny nodules we’ve known about in my neck, chest and lungs — presumed to be metastasized thyroid cancer — my annual ultrasound and CT scans on November 3rd identified a couple of problematic lymph nodes in my neck that have grown in size. I went in for a needle biopsy on December 2nd. The results came back positive.

Let me back up for a moment and share a little history. I was diagnosed with papillary thyroid cancer (tall cell variant) in 2011, and had my thyroid gland removed shortly thereafter at Memorial Sloan-Kettering Cancer Center in New York City. It may have been a secondary cancer, possibly related to the numerous CT scans and radioactive PET scans I’d undergone as part of my non-Hodgkin lymphoma treatment. That was followed up by a radioactive iodine treatment. In 2018, scans revealed more cancer activity, so I had neck dissection surgery at Memorial Sloan-Kettering. The surgeon removed more than 50 lymph nodes from the left side of my neck.

In 2021, in the normal course of things, I retired from full-time ministry. Claire and I moved to her hometown of Baltimore. I transferred all my medical relationships to Johns Hopkins Medicine. Dr. Douglas Ball became my new endocrinologist, overseeing my watchful-waiting treatment.

Beginning in April, 2024 I started working as Bridge Pastor (essentially a part-time interim pastor) at the church Claire and I have been attending here in Baltimore City — Light Street Presbyterian Church. That work ended about a month ago, when the Light Street congregation welcomed their new pastor, the Rev. Kate Morrison. As negotiated beforehand with Baltimore Presbytery, rather than riding off into the sunset — as most interim pastors do — I returned to our accustomed place in the congregation on Sunday mornings.

For the last several months of my preaching as Bridge Pastor, I was troubled by a persistent hoarseness in my voice. I’d had a cold in early September, so I figured the hoarseness was left over from that. I mentioned it to my primary-care physician here at Johns Hopkins, Dr. Stephanie Nothelle, who prescribed some throat-soothing medicines. We both knew I was about to see Dr. Ball for my annual thyroid-cancer checkup, so we agreed that I would mention the problem to him.

A few days before I went in to see him, I’d read the radiology report on my scans that identified those enlarged lymph nodes. Dr. Ball explained that — considering the location of one of those enlarged nodes directly adjacent to my larynx — it was possible that the tumor was pressing on the nerve that controls one of my vocal cords, causing partial paralysis of that vocal cord.

Dr. Ball referred me to a head-and-neck surgeon, Dr. Leila Mady, in the Johns Hopkins Otolaryngology Department. I had my consultation with her today. She ran a tiny camera up my nostril and down into the interior of my neck (sounds unpleasant, but it was fine), and took a look at the problematic vocal cord. Moments later, she showed me a video of what she’d seen. Dr. Mady had asked me to speak some nonsense syllables during the test — and, sure enough, the video revealed that one of my vocal cords was vibrating normally, but the other was hardly moving at all. Right next to the problematic vocal cord was some swollen tissue that is the cancerous node.

It was an odd experience to look at my own vocal cords for the first time — and not only that, to see them moving.

Dr. Ball had called it exactly right. Paralysis of the vocal cord, caused by thyroid cancer.

The next thing is for Dr. Mady to bring my case before the tumor board at Johns Hopkins that oversees this kind of cancer. They’ll meet a week or two from now. She’ll get back to me with a recommendation about whether surgery or more watchful waiting is the best way to go.

Neck surgery of any kind is difficult, she explained (although I already knew that). There are many important structures in the human neck, all clustered together in a small space. Each time the neck is opened up, surgery becomes more difficult, due to the aftermath of former surgeries. So it’s not something you rush into.

I did ask Dr. Mady her whether she thought I could get my voice back, if the tumor were removed. She delivered the response I’d feared: “probably not.” The nerve that controls the vocal cord is tiny and easily damaged. It’s likely that it’s already damaged beyond recovery. But surgery could prevent further difficulties.

The tumor’s position is problematic. Further expansion could damage the larynx, the trachea, or other structures in the neck. So, there are risks either way — from surgery or from continued watchful waiting.

("Zechariah Writes Down the Name of His Son," detail of fresco by Domenico Ghirlandaio, 1490)

During this season of Advent, one of the lectionary scripture passages is the story of Zechariah, father of John the Baptist (Luke 1:5-25, 57-80). Zechariah was a priest of Israel. The angel Gabriel appears to Zechariah, announcing that his wife Elizabeth, who’d long been childless, was pregnant with John the Baptist. Zechariah asks Gabriel for a sign, which the angel interprets as an expression of doubt. So, he takes away Zechariah’s ability to speak.

Nine months later, at the newborn John the Baptist’s circumcision, Zechariah’s voice suddenly returns — just after he’d written down the name of their infant son. The Song of Zechariah, uttered by him at that moment, is equal parts joy at the birth and joy at his own unexpected recovery.

For a priest — or a preacher — to lose his voice is obviously not a good thing. Needless to say, I’ve been thinking a lot about Zechariah in recent days. My voice isn’t gone completely — just my ability to speak loudly and clearly — but it seems possible, even likely, that my preaching days are over.

Just a month ago, I started a substack, Curated Sermon Illustrations, through which I’ve been sharing a daily sermon illustration for my fellow preachers — not to mention promoting my new book, Illuminating Sermons. I didn’t know, when I started this little retirement project, that I was in the process of losing my preaching voice.

So maybe that’s the way I’ll be preaching in the future — through the voice of colleagues, who borrow what I write there and share it in their own sermons.

June 29, 2019 — That Boulder in the Road

2019-06-29T15:10:00.000-04:00

So, did you hear the one about the two massive boulders that dropped from the sky onto a Colorado highway?

Well, not from the sky exactly. They broke off a nearby mountain and went rolling downhill, completely blocking Colorado Highway 145. No one was hurt. But no one could get through on the road, either, until something was done.

These were no ordinary boulders. They were big. Really big. The largest one was big as a house.

The highway department figured they could dispatch the smaller one — the one weighing 2.3 million pounds — with dynamite. Which they did. Kaboom! Then they bulldozed away the rubble.

The larger of the two boulders — the behemoth weighing 8.5 million pounds — was a different matter. It would have cost nearly a quarter-million dollars to pulverize it. So, State authorities decided to take a different approach. The Governor issued an executive order declaring it to be a monument. They christened it “Memorial Rock.” Then they re-routed the highway around it.

There are at least two different approaches to a cancer diagnosis. Oftentimes, you can blow the tumor up with treatments like chemotherapy or radiation. Bing, bang, boom and you’re done with it. Onward and upward!

Other times, the obstacle is just too dang big. You can build a road around the thing eventually, but it’s always going to be there, a part of your life.

I think it’s creative the way the Colorado Governor declared the mega-boulder to be a memorial. He did it to qualify for some kind of Federal highway funding, but there’s a sort of poetic justice to his proclamation. When something that big drops into the middle of our lives, causing a massive detour, it’s automatically a memorial in and of itself.

So, if you live with cancer, as I do, I suggest you try to make the best of it. Slap a bronze plaque on the thing. Issue a proclamation. Do whatever you have to do to convert your “new normal” into a monument: to something, it matters not what.

Then, the next time you find yourself driving by, give the thing a thumbs-up or a tip of the hat. If nothing else, it’s a memorial to the challenge you rose up to meet, then vanquished.

(Thanks to Sarah Todd, who wrote the story in Quartz that gave me the idea for this.)

May 12, 2019 — No News Is Good News

2019-05-12T18:03:00.000-04:00

I’ve been negligent in not keeping up with new posts to this blog. Medically speaking, that’s a good thing. “No news is good news,” as they say.

Actually, that statement’s not entirely correct. I have had several pieces of good news since my neck-dissection surgery at the end of November. I’ve had follow-up consultations with Dr. Boyle, my surgeon; with Dr. Sherman, my medical oncologist; with Dr. Fish, my endocrinologist; and with Dr. Hamilton, who’s following me for my long-quiescent non-Hodgkin lymphoma.

All of them are entirely pleased with my progress. A PET scan on February 26 picked up no trace of cancer in my neck. The surgery was evidently highly successful in removing all the malignancies that could be detected. Dr. Fish’s analysis of my blood work reveals no markers in my blood that would indicate a recurrence.

The PET scan did light up one area in my mediastinum — the area just behind my sternum (breastbone), which I’ve learned is one of the places where recurrent thyroid cancer can travel. But it’s small, has been there for several recent scans and shows no signs of change. It’s not in a location where a needle biopsy is possible, and there’s no other way of sampling the tissue except by means of major surgery, so all the doctors are agreed that “watch and wait” is the way to go on that. The area is small enough, and a PET scan is hard enough to read with precision, that it could fall within the realm of error.

Dr. Sherman tells me there are a number of advanced treatments available, should the anomaly prove to be more than just a smudge on the PET scan image. Some of these are quite advanced: targeted therapies keyed to my DNA. I feel like there’s no sense delving deeply into the treatment particulars before it’s actually needed: things can change, not only with me but also with current research into the most effective approaches. There will be plenty of opportunity to learn more, should it ever be necessary.

I don’t think about my cancer all that often, which is a good thing. I’ve become a real pro at this “watch and wait” stuff. I dutifully report for my lab tests and doctors’ appointments, and take comfort that some very skilled people are watching the results on my behalf.

No news is good news. Really.

December 3, 2018 - The Recreation Floor

2018-12-03T20:15:00.000-05:00

Yesterday and today Claire and I have had the opportunity to explore a part of Memorial Sloan-Kettering we hadn’t encountered during my earlier hospitalizations: the Recreation Floor. It’s not an entire floor of the hospital: just a part of the 15th floor, with a rather nice view of Manhattan skyscrapers.

My first couple of days here have all been about getting mobile again after my neck-dissection surgery - a more scary description than “lymph node removal surgery,” which is the kinder and gentler term I’ve been using. Dr. Boyle stopped by today and explained that he took out more than 50 lymph nodes - I’d only heard about 4 or 5 nodes lighting up on the PET Scan, but I figure the removal of the others was prophylactic. He said the pathologist will have a look at the nodes he removed and will let us know what’s going on with them. That will inform our future discussions about possible further therapy, be it radiation or chemo, or good old watch-and-wait.

The fact that the surgery site has continued to drain fluid into the plastic tube - that feeds a little cup nestled in the chest pocket of my hospital gown - is what’s kept me from going home today as predicted. Everyone’s optimistic that the flow will slow down by tomorrow, so the tube can be removed. I’m more than ready to go home. We’ll see.

That means I’m (1) mobile and (2) not receiving much in the way of active medical treatment, which has made me a good candidate for the Recreation Floor. Claire and I have hung out there twice now. Yesterday there was a group of five earnest Juilliard students putting on a little concert/dance performance, and today there was a guy tickling the ivories on the baby-grand piano (movie themes, jazz standards and the like), who I’m pretty sure was self-appointed but who was mighty good.

There’s a cruise-director sort of person who’s in charge of the Recreation Floor, who sets people up for art projects (decorating tote bags and Japanese lanterns), explains how the coffee machine works and lets everyone know which programmed diversions are coming up next. But most people just hang out, enjoying the cityscape view, reading their email or playing board games.

There are two types of people on the Recreation Floor: those solemnly padding around in hospital gowns (some dragging IV poles behind them), and others in street clothes - undoubtedly friends and family either accompanying their loved ones or taking a break from visiting them. None of us patients looked especially hale or hearty, but we didn’t much care. It just felt good to be out of our rooms.

The Recreation Floor is a gentle reminder of the fact that cancer is something you live with. Amidst all the high-tech medical wizardry around here, it’s nice to know there’s a place for painting Japanese lanterns and watching a talented ballet student demonstrate her grace and balance.

It’s about life. Which is the point of it all, isn’t it?

December 1, 2018 - Recovering

2018-12-01T16:32:00.001-05:00

Surgery is over: and successfully, according to Dr.Boyle. It took about three hours. Recovery is under way.

None of the unfavorable side effects have taken place. My voice is unaffected.

I don’t know whether it’s because surgery to the side of the neck is more difficult than surgery (thyroidectomy) to the front of the neck, or whether it’s because I’m five years older, but I’m finding this recovery slower going than before. I think it’s a little of both. I’m making progress, though.

One difference is that I do have a drain implanted - a plastic tube sticking out of one side of my incision. This was expected. Nurses stop in several times a day to empty the little plastic cup attached to it. Obviously, there’s no going home until the drain is out, but at this point I wouldn’t have the energy to do for myself at home, so it’s just as well.

The care here at Memorial Sloan-Kettering is first rate. All the staff are very attentive.

I do very much appreciate all the prayers and expressions of support.

November 29, 2018 — Back to the Operating Room

2018-11-29T01:29:00.000-05:00

It’s been more than a year since I’ve posted to this blog — which is a good thing. I haven’t had a lot of medical news to report. But now, that situation has changed.

Looking back at my past entries, I see that, on August 9, 2017, my endocrinologist Dr. Stephanie Fish was talking with me about the slowly-growing lymph nodes in my neck. She said at that time that they were big enough to remove surgically, but that I could also wait on the surgery if I preferred.

I chose to wait. She told me I’d probably need surgery within 2-5 years, depending on what happened to the thyroglobulin numbers.

Well, it’s not even two years yet, and the thyroglobulin numbers have climbed at a faster-than-expected rate. In subsequent visits with Dr. Fish and my surgeon, Dr. Jay Boyle, I got the unmistakable impression that — based on those rising numbers, as well as measurements of my lymph nodes taken by ultrasound scan — my doctors were ratcheting up their pro-surgery lobbying efforts.

Part of my hesitation has had to do with non-cancer-related realities of my life. After 27 years serving one congregation, I’m now in the first year of a new pastorate, and loving it (I started on February 1, 2018 as Pastor of the Lamington Presbyterian Church in Bedminster, New Jersey). I’ve been feeling hesitant to break the momentum of this critical first year, and as long as my doctors were at all open to a watchful-waiting approach, I’ve been content to coast along.

Besides, there’s a bit of a risk to this surgery. Although they reassure me that my cancer is slow-moving and my prognosis is good — and that there’s a strong likelihood the surgical solution will be effective — there are structures in the neck that could sustain collateral damage from the surgeon’s scalpel. The principal concern is nerves: especially one that controls the ability to lift the arm higher than the shoulder and another that controls my left vocal cord.

I figure I can live with some decreased mobility of my left arm, should that be the result. The vocal cords are a different matter: I speak for a living. Dr. Boyle tells me some permanent hoarseness of voice is a side-effect in about 25% of cases. (I’m assuming he’s talking about the general average; as a surgeon who narrowly specializes in this type of surgery, his personal average is surely better than that.)

Until about a month ago, I was hoping I could postpone the surgery until early in 2019. Considering the rhythms of parish life, there’s just not a good time for a pastor to take medical leave in the late fall — what with the annual stewardship campaign, and with Advent and Christmas following soon after.

Drs. Fish and Boyle were clearly not pleased with my foot-dragging, so several weeks ago I reluctantly agreed to have the surgery done tomorrow, November 30, at Memorial Hospital of Memorial Sloan-Kettering Cancer Center in Manhattan — the same place where I had my thyroid removed.

What pushed me over the edge was a consultation with a third MSKCC physician, Dr. Eric Sherman, a chemotherapy specialist, that took place on October 26. (Yes, my doctors triple-teamed me; and it worked.) There’s a possibility, I learned from him, that it may be wise to follow the surgery with either some mild radiation treatments — possibly a repeat of the radioactive-iodine pill I took following my thyroidectomy — or some chemotherapy, or both. Dr. Sherman was reassuring in predicting that the chemo I may receive will be nowhere near as potent as the R-CHOP regimen I underwent in 2006 for my non-Hodgkin lymphoma. He didn’t seem to think that either of those treatments will slow me down much. So, I’ll wait and see what recommendation emerges, after the pathologist has a look-see at my tissue samples, post-surgery.

Dr. Sherman also explained a detail to me that I somehow hadn’t picked up from what my other doctors had told me. There’s a sweet spot for lymph-node removal surgery: the nodes have to be big enough to remove easily, but not so large that they become enmeshed with other structures in the neck: that would make collateral damage harder to avoid. I’m in that sweet spot now. Were I to wait much longer, the possibility of limited arm motion or vocal-cord damage would be greater.

So, here I am, on the eve of surgery: fearful of post-operative pain, and anxious about waking up with a hoarse voice that may be more than the typical result of having been intubated in the operating room. They tell me I’ll be in the hospital for at least three nights following surgery, because I’ll have a drain implanted near the incision for that period of time. I’ve never had one of those before, so I don’t know what to expect.

The problem is, I’ve had a long time to think about this, to weigh the relative risks of watchful waiting vs. surgery. Had it been an emergency, I simply wouldn’t have had time to engage in second-guessing as I have.

In 48 hours or so, I suppose I’ll know a lot more.

November 8, 2017 — Alcohol and Cancer

2017-11-08T22:24:00.001-05:00

The latest cancer research news is likely to make a lot of people unhappy: drinking alcoholic beverages is now considered a definite risk factor for cancer, particularly cancers of the mouth, throat, voice box, liver and — for women — breasts. Alcohol also plays a lesser role in causing colorectal cancers.

The Cancer Prevention Committee of the American Society of Clinical Oncology (ASCO) has issued a statement of its belief “that a proactive stance by the Society to minimize excessive exposure to alcohol has important implications for cancer prevention.” Although they note that the research on which this advice is based “is still in the formative stages,” they have reached the point where they’ve started to advise people to reduce their alcohol consumption as a cancer-prevention measure.

The New York Times reports that the prevention message is not total abstinence, but rather very limited alcohol consumption: “The message is not, ‘Don’t drink.’ It’s, ‘If you want to reduce your cancer risk, drink less. And if you don’t drink, don’t start,’" said Dr. Noelle LoConte, an associate professor at the University of Wisconsin-Madison and the lead author of the ASCO statement. "‘It’s different than tobacco where we say, “Never smoke. Don’t start.” This is a little more subtle.’”

The Times quotes the researchers’ estimate that “5.5 percent of all new cancers and 5.8 percent of all cancer deaths worldwide could be attributed to alcohol.”

We’ve long been advised that a little wine — particularly red wine, with its antioxidants — is good for health generally, especially cardiovascular health. This latest statement sets up a certain conflict in the minds of those wishing to live healthy lives. Should we drink a little wine from time to time to keep our arteries clear, or should we abstain in order to avoid mouth, throat, voice box or liver cancer?

At the very least, moderation seems advisable. But habitual, heavy drinkers put themselves at significant risk.

August 9, 2017 — On the Back Burner

2017-08-09T11:45:00.001-04:00

I’m overdue posting my latest news, but I’ve been away on vacation, then was occupied with re-entry tasks after returning.

On July 31st Claire and I drove two and a half hours down to Albany from our Adirondacks camp in Jay, boarded a train in Albany and headed into Manhattan. Our destination was Memorial Sloan-Kettering, where I had a long-standing appointment with my endocrinologist, Dr. Stephanie Fish.

Once our vacation plans had fallen into place, I’d tried to postpone the appointment so we wouldn’t have to travel so far. But when I learned that Dr. Fish’s next open appointment slot was in February — you heard it right, FEBRUARY — I cooked up our elaborate travel plan.

I’d had ultrasound testing at the time of my appointment with Dr. Boyle in June, and had gone to the new MSKCC satellite facility in Middletown, NJ for a blood draw just before we left for the North Country. So, this appointment was to hear Dr. Fish’s recommendation on whether or not surgery is called for, to remove the suspicious nodules in my thyroid bed and the lymph nodes on the left side of my neck that have yielded a positive biopsy for thyroid cancer.

Turns out, the answer is neither yes nor no, but “not yet.”

Dr. Fish observed that my thyroglobulin had gone from 1.0 ng/mL in June of 2016 to 5.7 in January, 2017. My latest July 21 blood work had it at 5.2, slightly lower. My June 5 ultrasounds showed no significant growth of the lymph nodes in my neck. The suspicious nodules in my thyroid bed are unchanged in size (these are the ones that could not be successfully biopsied with a needle because they’re too deep). Both my surgeon, Dr. Jay Boyle, and Dr. Fish concur that it's acceptable to continue the watch-and-wait.

Dr. Fish said they’d be willing to proceed with the lymph-node and nodule-removal surgery now if that’s something I want, but I told her I’m content to wait on that. She said she had been expecting — based on the January results — a steady climb in the thyroglobulin level, indicating rapidly advancing disease, but it does seem to have stalled for now.

I asked her what I could expect as far as how long the watch-and-wait strategy will continue, and she predicted I’ll probably need surgery within 2-5 years, depending on what happens to the thyroglobulin numbers. She said her greatest concern is the nodules, because - if they are indeed cancerous - they’re located in a place where, if they did start to grow, they could invade other structures in my neck, such as the larynx and esophagus. The lymph nodes on my neck, on the other hand, are close to the surface and would be less likely to impact other structures.

This whole experience is sort of like being stalked by a vicious sloth. We can see him coming, but there’s no particular hurry to get out of the way.

Bottom line: watch-and-wait continues. Surgery is on the back burner. Follow-up blood work and ultrasounds are scheduled for 6 months from now.

If I wasn’t such a veteran at receiving this sort of news, I’d probably be consumed by anxiety. But I’ve been living with cancer for so long now, it’s not a new thought. Just more of the same.

After a dinner out with my sister-in-law Ramona in Manhattan, Claire and I bade each other farewell for the next week. I boarded an Amtrak train back to Albany, and she a NJ Transit train to our home on the Jersey Shore (she’d run out of vacation days and had to get back to work). I spent the next week getting our house ready for putting it out for rental on AirBnB: a new experiment for us.

July 12, 2017 — A Living Drug

2017-07-12T17:36:00.000-04:00

A hopeful news bulletin today from the New York Times:

“A Food and Drug Administration panel opened a new era in medicine on Wednesday, unanimously recommending that the agency approve the first treatment that genetically alters a patient’s own cells to fight leukemia, transforming them into what scientists call ‘a living drug’ that powerfully bolsters the immune system to shut down the disease.

If the F.D.A. accepts the recommendation, which is likely, the treatment will be the first gene therapy to reach the market. Others are expected...”

This particular treatment focuses on an uncommon form of childhood leukemia, and is earmarked for the 15% of patients who don’t respond to other treatments. Here’s how it works:

“The treatment requires removing millions of a patient’s T-cells — a type of white blood cell — and genetically engineering them to kill cancer cells. The technique employs a disabled form of H.I.V., the virus that causes AIDS, to carry new genetic material into the T-cells to reprogram them. The process turbocharges the T-cells to attack B-cells, a normal part of the immune system that turn malignant in leukemia. The T-cells home in on a protein called CD-19 that is found on the surface of most B-cells.

The altered T-cells — called chimeric antigen receptor cells — are then dripped back into the patient’s veins, where they multiply and start fighting the cancer. Dr. Carl H. June, a leader of the University of Pennsylvania team that developed the treatment, calls the turbocharged cells ‘serial killers.’ A single one can destroy up to 100,000 cancer cells.”

It's fascinating to me that the new treatment uses a stripped-down form of the HIV virus as a pack-mule to carry the re-engineered genetic material back into the patient's cells. There's a kind of poetic justice in using one killer to fight another.

Although the article refers to this treatment as a “drug,” it stretches the usual definition of the word. It’s part drug, part treatment protocol.

Whatever it is, I’m glad to see it’s ready for prime time. It can’t be long before other, similar treatments for a variety of cancers will follow.

June 5, 2017 — Keep Waiting, Keep Watching

2017-06-05T15:56:00.000-04:00

I've just returned from Memorial Sloan-Kettering's satellite facility in Basking Ridge, New Jersey. I had a routine ultrasound followed by a consultation with my surgeon, Dr. Jay Boyle. Routine, yes, but - since I'd had a biopsy of a lymph node on the left side of my neck several months ago that revealed recurrent papillary thyroid cancer - I knew this would be a discussion about treatment options. They're also pretty certain that several small nodules that have been detected in my thyroid bed (where the thyroid used to be) are also cancerous, but those are too inaccessible for a needle biopsy.

I also knew that, because Dr. Boyle saw no need to move my appointment up after news of the biopsy results came in, this is a relatively slow-moving situation.

Bottom line is, we decided to continue watchful waiting for now. I'd told the nurse that was my preference, based on what I knew, and she told Dr. Boyle of my wishes before he came into the room. He's agreeable with that. He said that, as far as he's concerned, we could go either way. He did say that, if we decided on surgery, he'd recommend removing a whole lot of lymph nodes as well as the nodules in the thyroid bed, because it's not easy to keep going back in there and remove a lymph node here, a lymph node there. With each new surgery, there's more potential for damage to the tissues of the neck area. He said that, based on the location of the nodules, surgery would present about a 10% chance of permanent damage to the nerve that controls the vocal cords. I speak for a living, so permanent hoarseness and weakness of voice is not something I'd consider lightly.

I asked him where in the body thyroid cancer usually metastasizes to, and he said the lungs and the bones are the most common. In either of those cases, though, he said it's usually treatable with either further radioactive iodine treatments or beam radiation.

The ultrasound showed no change in the size of the thyroid-bed nodules, nor of the couple of abnormal lymph nodes they've been watching, but it did show a new, very small lymph node in the same area that also looks abnormal. The doctor said he could only barely feel any of those lymph nodes as he palpated my neck.

The other doctor who's involved with this decision is my MSKCC endocrinologist, Dr. Stephanie Fish. Dr. Boyle tried unsuccessfully to get Dr. Fish on the phone to find out why, exactly, she'd ordered the biopsy - because he said that, in his experience, when a doctor orders a lymph node biopsy, it's generally because surgery is a likely outcome (if it turns out there's a malignancy, of course). When I reminded him of my non-Hodgkin lymphoma history, he said that could explain it - there would be a need to determine which of my two kinds of cancer was causing the swelling in the lymph nodes. Different cancer, different treatment protocol. (We now know, of course, it’s the thyroid cancer that’s recurred, not the lymphoma.)

I see Dr. Fish on July 31st. They drew blood today that will provide her with thyroglobulin numbers and other crucial information she needs, prior to that appointment.

It's kind of nerve-wracking to wait all that time, and a little frustrating that the two doctors weren't on the same page prior to my arrival today. Dr. Boyle said he will talk to her, though, and I'm sure he'll call if there's any change.

I'm OK with this outcome. I'd rather not face another surgery at this time, if if can be avoided. With years of watchful waiting for my NHL behind me, I'm comfortable with the "don't shoot till you see the whites of their eyes" approach. Sure, I'll continue to live with uncertainty, but what else is new?

Today's appointment confirms for me how important it is to be go into such meetings well-informed, and to speak up about my own preferences as a patient. Some treatment decisions are less than clear-cut, clinically speaking, which leaves significant room for patient preference to be taken into consideration.

Next appointment with Dr. Boyle is in 6 months. As I've said, I see Dr. Fish in just under 2 months.

May 22, 2017 — Enough with the Battle, Already

2017-05-22T21:58:00.001-04:00

I’ve written before about the many reasons why the familiar military imagery as applied to cancer survivors — her “courageous battle with cancer” — is not the most sensitive choice of words. I’ve seldom seen this topic explored so eloquently nor so concisely as in an article in the most recent issue of The Presbyterian Outlook.

The author is Ashley-Anne Masters, and the article is “Cancer Doesn’t Discriminate Between the Sinners and the Saints” (Presbyterian Outlook issue of May 29, 2017, pp. 48-49). She’s Interim Manager for Spiritual Care and the Heartlight Program at Lurie Children’s Hospital of Chicago:

“One side effect of cancer treatment that's as gross as nausea is the battle imagery. I can't stand hearing that someone who died from cancer ‘lost her battle.’ Anyone who ever endured cancer invading his or her body is anything but a ‘loser.’ The battle imagery is dangerous and painful. It implies that when someone dies of cancer, he died because he didn't fight hard enough. It implies that if someone chooses palliative treatment in the face of terminal diagnosis, she is giving up or not fighting.

It's also an unpleasant side effect for those living with cancer or thriving in remission. We celebrate and are grateful, yet battle imagery can add to a patient's symptoms of survival guilt. It does not mean he isn't (or wasn't) in the fight of his life during treatments. It does not mean she doesn't fear recurrence at annual scans. It does not mean they aren't strong and brave. But saying they ‘won the battle’ when they, too, have lost friends, colleagues and family members to cancer implies that they are somehow superior to the people they miss. Let's assist in savoring their celebrations and milestones. Let's not taint their gratitude and gumption with a prescription for guilt.”

Another reason, of course, why the battle imagery misses the mark — one that Ashley-Anne doesn’t mention, and in fact gets a little bit wrong — is that cancer is actually not an invasive disease, in the same way a bacterial infection is invasive. We don’t “catch” cancer. Cancer cells are manufactured by our very own bodies as a result of genetic mutations. While there’s sometimes an external cause that can be identified — as asbestos exposure is a leading cause of mesothelioma — it’s not the carcinogen that makes people sick, but their own body’s response to the carcinogen.

In cancer, certain cells of our body — for reasons that are often inexplicable — turn against other cells of our body: surrounding, quarantining and devouring them. That’s the true battle of cancer: not patient vs. disease, but cell vs. cell. The patient is the battlefield, not the steadfast soldier.

Visualizing ourselves “battling” cancer means we’re doing battle with our own bodies, and that’s hardly a helpful way of looking at it.

March 24, 2017 - Moving That Fear Threshold

2017-03-24T11:59:00.002-04:00

Today, in the online Cure newsletter, I came across an article by a cancer survivor named Barbara Carlos, who’s noticed a change in the role fear plays in her life, since undergoing cancer treatment:

“I am not sure exactly how or when it started, but somewhere in the midst of chemo, I noticed a change. Things that used to make me crazy no longer bothered me. Other things that I had thought so unimportant that they had been left perking away on the back burner for years suddenly came to a full boil. It was confusing....I kept chugging along, constantly juggling priorities and re-prioritizing them. After a while, I noticed a change in my attitude. I was no longer afraid of the little things in life. I didn’t care if I wore the wrong clothes or said something stupid in a meeting. After my last chemo, I spent a week in the hospital with neutropenia and had another two weeks of bed rest at home. I didn’t physically feel up to doing anything that required more exertion than breathing, but my brain clicked away as I lay there. By the time I started radiation, the transformation was complete. I had become fearless. In spite of the nasty burns on my chest and the pain they generated, radiation was a piece of cake compared to chemo. I had made it through chemo and I was going to make it through radiation just fine. I had faced off the Emperor of All Maladies and won the battle. I felt empowered beyond words and completely confident that I was going to win the war.”

It’s similar to the experience I’ve had, over the 10+ years of my journey with cancer. And, I know from conversations I’ve had with other survivors, that it’s true for many other people as well.

“Whatever doesn’t kill you makes you stronger,” goes the old adage. It’s especially true of cancer.

One of the things we learn as cancer survivors is that our fear threshold is moveable. What moves it is the experience of facing our fears, not running from them. When we face a hitherto unimaginable challenge and move right on through it, we’re strengthened to face other challenges that may lie ahead.

We’re not free of fear as we do so. Fear can’t be so easily banished by positive thinking, nor even by prayer. Most of us don’t pray away our fears: we pray through them.

Often, folks are inclined to match up the word “courageous” with “cancer patient,” but those of us who’ve been through it know it’s not any virtue inherent in ourselves that helps us make this transition. It’s one of those Higher Power things, as our friends in AA would say. When we’re flat on our back on an operating-room gurney, and the anesthesiologist is about to open the valve on the IV line that will send us off into unconsciousness, there’s nothing we can do in that moment to influence the outcome. We’ve got to turn it all over. We have no other choice.

Those of us who are conversant in traditional religious language turn it over to God. Others may go the Higher Power route. But whatever language best captures our experience, there are times when we can sense that fear threshold moving. And the good news is, once it moves forward, it rarely moves back again.

February 9, 2017 — Confirming What We Already Knew

2017-02-09T16:09:00.000-05:00

Three days ago I made the trip to Memorial Sloan-Kettering in Manhattan for a repeat of the biopsy that didn’t work out so well. That was actually two biopsies: one of some lymph nodes in the left side of my neck that have become enlarged, and the other of some small nodules that have developed in my thyroid bed (the area where the thyroid used to be).

I evidently misunderstood what the nurse told me in an earlier phone conversation. Turns out, the lymph-node biopsy was successful after all, yielding enough tissue for analysis. The problem was with the nodes-in-the-thyroid-bed biopsy. This is the one they wanted me to come in to repeat, this time to Manhattan rather than to Basking Ridge.

That didn’t happen, though. The interventional radiologist in New York did an ultrasound of my neck, and after looking at the results she concluded it was too difficult, even risky, to biopsy the nodules. They’re located very deep inside the neck, and they’re surrounded by so many blood vessels that there would be the risk of internal bleeding that could be hard to control. Her largest needle is barely long enough to reach that spot, she explained, and the longer the needle, the harder it is to control its tip precisely. She promised I’d be hearing soon about the results of the lymph node biopsy, once the other doctors have had a chance to confer.

Yesterday, I got a phone call from my endocrinologist, Dr. Stephanie Fish, who ordered the biopsies. She confirmed that there is papillary thyroid cancer in the lymph nodes, the same type that had showed up in nodules on my thyroid gland five years ago.

This is further confirmation of what we already knew — or had at least surmised. Dr. Jay Boyle, the surgeon who removed my thyroid, told me back in July that the nodules were almost certainly a recurrence of thyroid cancer.

But there’s still no particular hurry to do anything about it. The protocol continues to be “watch and wait.” Dr. Fish told me that Dr. Boyle sees no reason to move up the date of my next scheduled appointment with him, which is in June.

I’m OK with this. It’s taken me some years as a cancer survivor to wrap my mind around the concept, but “watch and wait” is not a matter of ignoring the issue. In certain circumstances, it’s a treatment modality in itself.

To paraphrase ol’John Milton, they also heal who only stand and wait.

February 2, 2017 - Again with the Needle

2017-02-02T22:28:00.001-05:00

Late this afternoon, I was a the gym when my mobile phone rang. Caller ID said only "New York City." Realizing it wasn't a local emergency call involving a church member, and not wanting to step off the elliptical trainer, I let it go to voicemail.

When my 30 minutes on the elliptical were ended, I listened to the message. It was from Memorial Sloan-Kettering. Please call back because one of the nurses has a message for you from Dr. Fish.

OK, this is it, I said to myself. My biopsy results.

I called back, and was eventually connected to the right nurse. Yes, she did have my biopsy results: just not the results I expected.

The tissue samples from the lymph nodes were not diagnostic. (In other words, inconclusive.) Dr. Fish wants you to come in - to the main hospital in New York this time - and repeat the biopsy.

That was surprising to me because the needle-wielding doctor at the MSKCC Basking Ridge facility had seemed so confident she'd gotten a good sample.

Someone's going to phone me tomorrow to set up the appointment.

I'd call the news "a kick in the pants" were it not for the fact that getting another needle in the neck sounds worse.

Oh, well. Cancerland is full of surprises.