Outlier

Every weekend, our family gathers together for a practice Michelle sagely introduced many years ago, the “family meeting.” Recommended by some parenting gurus to help tighten the ties that bind a family with growing kids together, we gather at the dinner table, sing a song, offer appreciations for the helpful or remarkable things each other has done in the past week, and answer questions meant to reveal bits of ourselves from a book appropriately titled, “The Book of Questions.” That might sound a little Kumbaya-esque, and it was frankly painful for many years of coaxing along younger children who struggled to embrace the practice, but we’re all pleased with our weekly meeting now. That our family feels extremely close right now might be 90% due to my cancer, and most of the rest a mix of enviable genetics and superb parenting skills, but that steady score of family meetings bears a bit of the credit, too.

Our family meeting just prior to launching forth to Seattle for my 3 month cancer follow-up included an amusing and somewhat cryptic question: “How would it feel to always describe yourself as ordinary, no better or worse than most others? Would it be a relief or a disappointment to realize it was actually true?” My extraordinarily humble wife started us off by replying that she considered everyone extraordinary, so existing in the eyes of the world as an average being was just right as rain. My turn to answer. I knew a good-natured eye-roll was coming from Michelle, and I was laughing before I was talking (or at least something vaguely akin to laughter from a person whose jaw only opens a couple millimeters), as one of our family tropes is, “Buzz thinks he is so special.” I don’t remember exactly what I said, but true, I had to confess: “That would be terrible! I might not think of myself as a ‘better person’ than anyone else, but I think I’m anything but ordinary and couldn’t stand to be average!”

Karma. Sometimes the greatest gift is to be average.

Aside from a healthy level of self-esteem, I’m also driven by a respect for the value of probabilistic thinking. I might listen to my gut, foster intuition, or look for the odd miracle, but ultimately my left brain runs the show. A cancer diagnosis can wreak havoc on anyone’s sense that “everything’s going to be okay.” It’s helpful for the fortunate ones like me who have a positive prognosis at the time of diagnosis; a roughly 90% cancer-free survival rate at two years is something to hang your hat on while suffering through treatment. So, too, are the numbers I heard about what to expect down the road, that in 3 months most of my treatment-induced ailments — the mucositis pains, taste changes, and so on — would be 80-90% back to baseline.

Those were the averages. To be honest, I did not pay all that much attention to the conversations about what to expect after treatment; I had to assume I would be okay, both because I was a healthy, fit, never-smoker, and because mid-treatment it was too awful to even think about still suffering months down the road. I trusted the probabilities. As my symptoms started getting worse instead of better about two months after treatment and my neck CT came out clean, I figured delayed radiation symptoms must be more common than I realized, and that my University of Washington team would reassure me that I was doing fine and just needed a little more time.

That’s not what happened. Turns out I am an outlier.

When I garbled about my clenched jaw, my swallowing pain, the burning neuropathic pains to my tongue and gums, the reaction from my different medical teams was generally wide eyes and a sympathetic, “I’m so sorry.” I didn’t even need to ask if they saw a lot of people with TMJ issues this soon after treatment; they had nary a Physical Therapist on their staff with TMJ expertise. Describing the neuropathic mouth pains always brought just one response: “Uh, could you try taking more gabapentin?” The source of the swallowing pain, at least, was revealed, when I had my mouth and throat scoped. Watching the screen, somewhat nervously, there appeared tucked to the left of the base of tongue what looked like an ulcerated cauliflower.

First thought: “Oh, God, that’s a new tumor.”

Second: “Hospice time.”

That thought didn’t linger. I’m committed to raising my daughters. If I had to undergo another round of treatment, I would do it, barring a survival rate uncomfortably close to zero. I can say, though, seeing that lesion in my mouth was a hard moment.

Like many people, I have always been uncomfortable with death. I don’t like hearing about childhood figures dying. I do the uncomfortable math when I hear about some obscure historical character accomplishing something great decades ago, wanting to know, while not really wanting to know, if they are probably dead by now. I love life. I don’t like hearing about it ending.

These six months have shifted that discomfort. I’ve had a great life. It’s an absolute drag right now. Something hurts all the time. My jaw or my tongue wakes me up every hour or two. My mouth is dry so I have to squirt some xylitol into my mouth with every wake-up. I can only sleep on my right side so now my right hip is working on a trochanteric bursitis and my right shoulder is asking for a raise. The great pleasure of eating has been reduced to four 600-calorie smoothies per day. I try to avoid phone conversations because talking loudly or clearly hurts my jaw, but any speech is almost always at least mildly uncomfortable. What spontaneity I once knew has been replaced by the need to pack a small apothecary with me whenever I leave the house — what if my mouth gets dry, or the jaw spasms gets bad, or the nerve pain flares? — not to mention two smoothies if I’ll be gone more than five hours. It’s tiring. It’s not fun. My life is a cadence of discomfort: swallow - ouch - swallow - ouch or step on right foot - left foot - jaw pain - right foot - left foot - jaw pain. I would have told you 6 months ago I feel like a 28 year old trapped in a 53 year old’s body. Now? 30 heavy years have dropped onto my chronological age. From the distance, I could pass for an unhealthy 80-something year old, emaciated, walking slowly, grimacing often, complaining about my pain to anyone who will listen.

One of my childhood best friends, Andy, once said in a contemplative high school moment while discussing death, “I can believe that after a while you could just get tired and be ready to go.” I didn’t agree at the time. Now I understand. I understand why one of my patients with a second cancer diagnosis opted for hospice instead of radiation and chemotherapy despite the tumor being readily treatable. We get tired. Sometimes a hospice nurse with a bucketload of morphine and ativan sounds pretty good.

HOLD ON HERE — I’m getting ahead of myself. What was that cauliflower in my mouth? It was not a tumor, thankfully.

Turns out it was an ulceration, radiation-induced necrosis of the soft tissue in the region of my throat that got absolutely blasted by radiation near ground zero for my tonsillar tumor. I was told only 5-10% of patients develop these. I’m one of them.

The treatment? 6 weeks of spending 90 minutes in a hyperbaric oxygen chamber every weekday. Fortunately, I am not claustrophobic. Remarkably, the only true HBO2 chambers on this entire island the size of Connecticut are in the small town that is home to our office, about 5 minutes away.

I read a snippet about hyperbaric oxygen clearing these soft tissue ulcers 80% of the time, even if the epithelium never returns to full health (does that imply an end to my bourbon-drinking career?). I’m sure if I were critiquing the study for my other blog I would destroy it; I doubt there was even a control arm. I don’t care. I need high numbers these days, and will read no more. Maybe all that oxygen will help the clenched muscles of my jaw heal a bit, too. And, to be honest, maybe it’s the gabapentin, maybe it’s time, but those neuropathic pains in my mouth are definitely improving at the moment. The 8 out of 10 tip-of-the-tongue pains that could last for minutes and come on every time I talked or drank water disappeared a couple days ago; maybe they’re gone for good, leaving the milder and more constant tongue and gum pains behind. I generally feel like I just walked out of an overzealous tooth cleaning; it’s not pleasant but it’s manageable.

I’m someone who does better with a plan. I’ve never had much belief in hyperbaric oxygen being the wonder-innovation some proclaim it to be, but I am all-in on it now. 4 weeks, I am told, is when people tend to start to see improvement in their ulceration. That should make swallowing more comfortable. Truly, once I get going on my smoothies, it hardly hurts. If my neuropathic pains continue their downtrend, I will be enormously grateful.

That would leave my TMJ issues. They are awful, and they interfere with almost every aspect of my life. They also should improve with time, especially if I can resist the urge to ever let another healer touch my masseter muscles again. In Seattle a highly-recommended Chinese acupuncturist went right into my jaw muscles with her “large” needles (I did not know they even had “large” acupuncture needles!!!) when I expected the painlessness of the usual finely-honed needles; the situation, with her repeatedly saying, “I’m so sorry, I know this hurts” while twirling needles into my angry muscles makes me think of the Dustin Hoffman-Laurence Olivier dentist scene in Marathon Man.

Ouch. After that, I stopped being able to even squeeze a 200mg ibuprofen between my teeth. One more attempt at a gentle osteopathic adjustment upon my return doubled my pain, and made my trismus negative, something I did not even know was possible (my upper incisors briefly overlapped my my lower incisors no matter how I tried to open my mouth). No, I leave the easing of my TMJ problems to tincture of time, warm compresses, and, of course, that hyperbaric oxygen chamber, which I am quite certain cures TMJ dysfunction 100% of the time.

I’m fairly confident I will get better in the coming months, although that’s a confidence borne only of probabilities. My “gut instinct” swims in the dark waters of seven months of bad news and suffering.

I continue to hope it needn’t matter all that much. After all, during the majority of my waking hours when my discomfort is not-so-bad, I still enjoy my life. Especially on a quick trip to the Las Vegas desert in springtime after our medical tourism in Seattle.

What I realize is that I enjoy my life differently than before, when it was not such an involved affair. Even my relationship to food has shifted. At first, I was full of resentment; how dare circumstances conspire that I cannot eat these wonderful-smelling foods I pass? Now, I harken to a modern Zen saying once recounted to me by that same childhood friend. It ran something like, “When you walk past a nice restaurant, stop and take in the fine foods through the window; then move on.” I appreciate the smells and visual textures of the foods I see in super markets, restaurants, and our own kitchen. I know I cannot eat them (at least not without the help of our immersion blender). But I appreciate that they exist.

Best of all, odds are good that someday I’ll be able to eat them again. Just like an ordinary guy.