A Good Man Is Hard to Find

The past two weeks have been quite a fortnight here on the Hollander ranch. Not in a “my sister won a Pulitzer Prize” or even “I gained 5 pounds” positive sort of way. Not that at all.

It started with a tooth cleaning two weeks ago. Really, before then. I’d been noticing that my temperomandibular joint (TMJ) issues which date back 40 years had started to kick up a bit. No surprise, really, or great cause for concern, since many a time since my treatment started and I chewed my food, relentlessly, only on the less ulcerated right side, trying to get it small enough to swallow without ripping off bits of my palate, I’ve thought: “Surely, this is going to activate my TMJ issues eventually.”

That began to happen about a month ago. Some clicking and discomfort, especially when I started to chew my meals. Annoying? Yes. Worrisome? Not really.

Then, around the first of the month, just as my oral mucosa finally began to heal enough to, say, have a sip of coffee without a moderate sting, I began to notice a new discomfort every time I swallowed. Not just when I swallowed harshly textured foods, either; it happened when I swallowed anything at all. Saliva, water — anything. It lacked the burning quality I had gotten used to from the mucositis. The feeling was more like… like… something was in the soft tissues of my throat, around the left back of my tongue, rather like, I don’t know, an enlarged lymph node or a tumor(!!!).

This was disconcerting. A few days later, I noticed a feeling of fullness and discomfort tucked inside the angle of my left jaw. It was a bit tender, and made turning my head to the left noticeably unpleasant. Then it started waking me up once or twice at night, throbbing, despite popping a 100mg celebrex at bedtime.

I am capable of a lot of rationalizing when the sun is in the sky. Surely, whether he was making it up or not, when my Radiation Oncologist told me the odds of a clean CT in May were “99.99%,” it’s because there was almost no way I could have a growing tumor in April, while the rest of my mouth is still reeling from the effects of all that radiation. However, that’s daytime mind. When nighttime mind gets woken by pain that feels more or less exactly like you would expect a tumor to exact, it tends to spin. Rapidly. I began to get anxious.

None of this was helped at all by my virtuous decision to get my teeth cleaned two weeks ago. Clearly, it was The Right Thing To Do, since radiation therapy is notorious for damaging the dentition, and my daily work trying to reduce my trismus (the inability to open my mouth very wide) had led to the modest achievement of being able to insert two whole fingers between my upper and lower incisors, with a couple millimeters to spare! I dragged myself in to the dentist and had a surprisingly tolerable hour with my mouth mostly wide open.

By the next couple days, I was a bit concerned when my trismus was a hair worse and my TMJ pain more than a little disruptive to meals. Within the week, though, my two fingers were down to one, and, sadly, meals were once again miserable.

This was bad enough on its own merits, just as I was celebrating an impending end to the avoidance of all things tart, spicy, and beer-like. What really got me was the fear that perhaps the trigger to my TMJ pain was not too much right-sided chewing exacerbated by a visit to the dentist, but rather a recurrence of the tumor which had been sitting in my middle pterygoid muscle for several months last autumn. Coupled with that sense of fullness inside my jaw, and the new discomfort swallowing, my mental fortitude began to wobble.

At times, I felt like I was prosecution, defense, star witness, judge and jury at a trial determining my mortal fate. Many a down moment was spent with mental interludes of this nature:

Prosecution: “Dr. Hollander, may I safely assert that you are a fan of Occam’s Razor, the principle by which the simplest explanation for a natural phenomenon is most likely to be true?”

Star Witness: “You may.”

Prosecution: “So, if I were to posit that you have jaw muscle pain from TMJ, pain swallowing from a new ulceration that does not feel like your old ulcerations and began just as your mucositis was actually healing, and a marked discomfort and sense of a mass inside of your left jaw that possibly could be ascribed to lymphedema from fibrosing lymphatic ducts, would you characterize that explanation of your new symptoms as ‘parsimonious?’”

Star Witness: “I would not.”

Prosecution: “Might there be a single, unifying explanation for all these new symptoms of yours, which began right around the time your radiation side effects began to fade away?”

Star Witness: “Well… I suppose… it could be that —” [interruption from across the court]

Defense: “Objection! Judge, the defense attorney is leading the witness. We all know he recently had a locally advanced cancer in his oral cavity. We are not disputing that fact. However, he was told by a highly reputable in-field expert that there was a 99.99% percent chance his next CT scan would not show evidence of cancer, and his oncology team has reassured him that this is probably all post-radiation fibrosis and not a tumor recurrence.”

Prosecution: “I see. And Dr. Hollander, this 99.99% figure, it was based on an actual physical exam and radiologic neck images at the conclusion of your treatment?”

Star Witness: “Uh, no, it was not. He said it was just the nature of these cancers.”

Prosecution: “And based on your understanding of the efficacy of chemoradiation for locally advanced HPV+ oral cancer, do you find that figure of 99.99% reasonable, given the 10% or so mortality rate of this condition at 1 year?”

Star Witness: “It did - uh - it did seem rather aggressively reassuring, I grant you.”

Prosecution: “And I don’t suppose your radiation oncologist led you to expect that, 8 weeks after treatment ended, you would shift from slowly improving week-by-week, to rapidly worsening over a two week period?”

Star Witness: “Perhaps not in so many words. No. I expected I would continue to improve every week. Possibly I wasn’t paying enough attention to what they were saying?”

Prosecution: “And your radiation oncology team, after reassuring you, did they… do anything else?”

Star Witness: “Well, they did order a CT scan.” [jurors look meaningfully at one another]

Prosecution: “I REST MY CASE.”

Defense: “Request to delay further proceedings until after completion of CT!”

Judge: “GRANTED!”

Yes, many a quiet moment was spent with this loop in my head. Note: prosecution did seem to keep getting the upper hand, although my wife, Michelle, as well as a friend from college days who happened to check in during a good day for the prosecution, admirably swayed me back to the very real possibility that everything was probably okay. Endearingly, they both managed to find the same review article on the horrors of post-radiation adverse events in the months after the completion of treatment in their attempts to “reassure” me.

So, the CT was scheduled for this past Monday. Finally, I had some insight to what I had long wondered about for my patients hopeful that their cancer was in remission: “how much of a mind$%^& is the wait for that follow-up CT?”

I decided that I would take advantage of the four days I had before receiving my sentence by living as fully as I could. That was a challenging goal, especially when discomfort rose, and carried paranoia up with it. Then I had my Flannery O’Connor moment.

I had taken a walk on that Thursday, up the hill above our house. Walking back down towards the distant ocean in the serene late afternoon light, I was thinking of how anxious I was to be back in the company of my daughters on arriving back home. How precious they were to me. That an incoming text, or a chance to squeeze in a few tasks for the clinic, would not waylay me from giving them my full time and attention. It hit me: this is just how I felt after my initial diagnosis! Where had this noble sentiment gone? Washed away, or at least dangerously diluted, by the tides of time; by reassurance that I would be okay after this miserable spell ended; by the desire to be my normal, productive self. I thought, too, about the promises I had made to myself towards Michelle; how she would forever have the benefit of the doubt in any marital territorializing between us, and would always merit my full attention and understanding, for having stood by me the way she did when I most needed her. How was I doing on that count?

A warm flush of shame washed over me. I had blown it. I was so busy just living that I had squandered this once-in-a-lifetime opportunity to dedicate myself to the most important aspects of my life. The only way, apparently, to embody my mission with full commitment again? To face the same threat to my mortality. Enter the memorably dark line of Flannery O’Connor’s succinct masterpiece, “A Good Man is Hard to Find,” the title a nod to the exceedingly popular Bessie Smith song of the era:

Disappointing, if I really need the threat of a conviction in the Court of Ill Health to summon up my best in this world. I hope I am never as ridiculous and petty as the family matriarch of O’Connor’s chilling short story, but I know I can do better.

So… that CT on Monday. I spent a happy Sunday on an outing with my girls to the beach, thinking more about what I had than what I stood to lose. I slept pretty peacefully on Sunday night despite the sense that it might be 50/50 I’d have terrible news by the next sunset. By Monday morning, I was ready to have my day in court and get this over with.

The verdict: cleared of all charges of cancer recurrence. I will caution my readers that the Radiologists on Oahu missed about a third of the positive findings on my initial CT, so this judgment is subject to appeal once I send the images to my oncology team in Seattle. Still — it appears “prior odds” wins the day over my usual intellectual favorite, Occam’s Razor, and my next medical steps will not involve major orofacial surgery with a descending prognosis.

In a perfect world, the reassurance of the negative CT would have closed my brain’s gates of pain to all these tumor-like sensations. Not so, alas. I’m quite uncomfortable in my native state, although 600mg of ibuprofen makes luxurious activities like eating, drinking and talking downright manageable, sometimes even enjoyable. I’m grateful for that ibuprofen, although I hate needing it to be happy, instead of sulky and bitter that I am still suffering as much as I am.

I struggle with that dichotomy right now. With discomfort under control — and it’s not even that bad, at its worst, compared to what many of my patients must contend with every day! — I am often gloriously happy and grateful. When the pain rises enough to grab my attention, my mood instantly slips, and my manner trends short.

I’d like to be a better man. I don’t fully understand why I was not more ecstatic at the sight of that clean CT report. I can guess, though: it’s because a clean CT would not help erase this discomfort, and doubt about how many comfortable days I can expect in my future. It can be daunting.

Meanwhile, I have sought help for my aches and pains. My TMJ progressed to the point that I could barely open my mouth at all by midweek. A dear friend who happens to be an osteopathic physician with substantial experience treating TMJ pain offered to help, with the warning, “You won’t think I’m your friend when I am doing it!” Fair enough - I don’t know if what she did to me would be allowed at Guantanamo Bay or deemed too risky to lead to international tribunals, but I did feel a bit better that day. I employ hot and cold compresses to entice the masseter muscles to cease their spasming. I take all forms of anti-inflammatories. I try to watch my posture. I relax more.

As I write this sentence, my trismus has eased a bit from its nadir, and, ibuprofen on board, I feel mostly fine. I am grateful to not be in the process of queuing up for an exceptionally painful surgery, and the need to ask my family to watch me suffer again. I’m appreciative of all I have which supports me on this earth. I don’t want to require another cancer diagnosis to remember all this. I’d rather handle this on my own.

“Lord, a good man is hard to find You always get another kind…” —Bessie Smith, “A Good Man is Hard to Find”