Evermore

We all want to heal from our ailments. When a patients sees me about a problem, the usual driver of the interaction is the hope that I will point them towards a solution to their problem, so they can get back to feeling the way they did before.

Of course, a problem lies within this paradigm: we adults fortunate enough to be alive in this earthly realm all are growing older, acquiring DNA damage, absorbing injuries, and slowly losing regenerative capacity. We can’t really go home again, much as we might like. The anti-aging medicine folks — who drive me absolutely crazy, and not just from their inherently absurd chosen name — insist that if we spend enough money, test for every known condition, “self-hack” our genetic variations, work out like a professional athlete, follow a fine-tuned diet, and sprinkle in some resveratrol and rapamycin, we can cheat Father Time. I think some common sense measures done right might enable us to borrow a bit of time; but cheat? Cheating is not allowed.

With that perspective, I’m feeling that siren call to “go home” again. I’m in my house, true, but I’m not quite the same occupant as when I left it in December.

My last treatment was seven weeks ago, so this moment strikes me as a fine time to reflect on what condition my condition is in, given the name of this blog. I’m okay; I could be better, and I could be a lot worse.

The three outcomes I feared most going into my cancer treatment were a dreadful complication from therapy (fairly unlikely and avoided, thankfully); incomplete response requiring a barbaric surgery to carve out the remaining tumors (quite unlikely, and To Be Determined in mid-May with a CT and laryngoscope looking for cancer stragglers); and being so altered by my treatment that I would not feel at all like the person I was on December 18th, 2022. The latter concern struck me as rather likely. Heavy radiation applied to the area between ear and collarbone promises a future fraught with all sorts of potential problems. Systemic cisplatin adds a few more. I was deeply concerned about this possibility — and told myself that it was an absolutely fair trade if it meant I get to watch my children grow up.

These sorts of bargains sound reasonable on the front end of negotiations. I was pretty desperate, after all. Once the deal has gone down, though, it’s easy to get a little greedy. I want none of these problems. I want to “feel like myself” again!

The cisplatin made me most nervous, perhaps unjustifiably. It’s meant merely to “potentiate” the radiation. That said, whenever they got ready to run the stuff into my IV, a second nurse would be called into my room to confirm this was absolutely, positively Robert B Hollander III about to receive this toxin. The nurse handling the precious yellow bag was dressed in a hospital version of a HAZMAT suit, like if, God forbid, they were to even touch the outside of the IV bag with a bare forearm, they would instantly crumple to the floor from florid renal failure. I was told not to share my bathroom with other family members lest they inhale particles of the stuff from my urine. Seriously! Then, after all the confirmations, safety procedures, and warnings, they proceeded to pump the whole bag right into my veins. Seven times. Amazingly, I survived, as did my family.

However, neuropathies appear to be my health Achilles’ heel (well, except for HPV+ cancers, I suppose), and cisplatin is a devious enemy of the nervous system. This, from the Mayo Clinic reader on cisplatin:

“Check with your doctor right away if you are having burning, numbness, tingling, or painful sensations in the arms, hands, legs, or feet. These could be symptoms of a condition called peripheral neuropathy. These symptoms may occur 3 to 8 weeks after the last dose of this medicine.”

Wonderful. How long did I say it’s been since my last treatment?

In any case, so far so good on the neuropathy front. That’s a relief. My tinnitus is no worse, either, another great blessing. I was fully prepared to cheer on my daughters — as they graduated through academic strata, married their loves, maybe even had a child or three — barely able to hear their wedding toasts for the cacauphony in my ears, and unable to take a first dance with feet that felt like blocks of Mauna Loa cave ice. I’m not prepared for that anymore. My feet are fine. My hearing is fine. I don’t want to give these blessings up!

I feared equally the specter of “chemo brain,” the mental fog for which cisplatin is notorious for gifting its recipients, sometimes for years after treatment. I generally tried to shield myself from statements like this, from the NIH on cisplatin:

“Cancer-related cognitive problems are estimated to affect more than half of cancer survivors. There are currently no FDA-approved medications to treat cognitive problems linked to cancer treatment, and research examining the molecular mechanisms responsible for them has been limited.”

While “brain fog,” with its indistinct terminology and New Agey sound, is often derided in this era of pundits trying to wish Long COVID out of existence, it’s real to me. For a few days after my case of Covid-19 last year, I felt like my brain was packed in cotton balls, an unpleasant mix of depression, cognitive impairment, and fatigue. It’s a bad match for a doctor.

Thankfully, my brain has been fine throughout. (Readers who disagree, the Comments section in yours.) Cognitively, I don’t feel slowed down in the slightest. Huge relief! After falling prey to fatigue a bit more easily than usual for the weeks after treatment, that, too, is easing. I’m starting to run and swim for five or ten minutes at a time. My mood is generally fantastic — I mean, I dodged a bullet, right?

Now that I feel better, I increasingly flash back to the way I moved through the world in the weeks before starting treatment, full of appreciation for the smallest blessings. I admit, feeling better also carries with it risks, like taking what is precious for granted, getting caught up in unimportant matters which only feel important, and focusing more on my to-do list than the life around me. More often, though, it’s easy to smell the flowers. The other day I was walking hurriedly out of the house to pick up our girls after a busy morning researching and writing about prostate cancer and responding to messages from patients when it hit me: “This sunlight, these trees, the sound of the birds… how lucky am I to be alive to experience them?” I don’t want to lose this charge. It’s the most valuable of the silver linings from this whole torturous process.

Ach — I just went and broke my code to not use “torture” as a descriptor for my experience. What the radiation did, and does, to my mouth, however, could merit use of the term.

Again, we who are to undergo head and neck cancer radiation therapy are warned of the possible ill fates awaiting us. I’ve avoided many. My taste buds appear to be their old tasteful selves. My swallowing seems fine, at least for now. The fibrosis that can impact the swallowing musculature as well as infiltrate the muscles of the neck over the months and years after treatment thus far has been held at bay by good fortune and/or my mediocre participation in the thrice daily stretching program Speech Therapy laid out for me in a disconcerting pre-treatment session (“Look at this diagram of the swallowing muscles — [draws in where my tumors and lymph nodes are] — where are they going to need to direct radiation? [Shakes head, looks disgusted.] That’s right, every level of the muscles. They’re all going to take a hit.”)

Dry mouth? Yes, I’ve some dry mouth, especially when I get in a pool. I know this condition often worsens with time and can be nearly debilitating for some people, but mine has been mild enough to this point mostly to serve to remind me, “Thank God my palate is not still so denuded that I am drooling and aspirating on my own secretions!” Everything is relative, I suppose; I might find it less amusing when I have to carry a water bottle for a swim race.

What really holds me back from feeling like I am “done” with cancer treatment is that still, 7 weeks out from the end of treatment, my mouth hurts at least a little most of the time I talk, and a fair bit of the time when I eat my very carefully curated diet. Sometimes, especially by the end of the day, or if I dare to eat a muffin with a hint of texture, it hurts a lot! My mouth looks like it should be pretty good; here it is compared to mid-treatment (at bottom):

Somehow, my tongue hurts just as much now as it did when it looked like a snake shedding its skin; and the back of my throat is still nearly as touchy to a mere prickly crumb. So strange. The glacial rate of symptom improvement has had me worried at times. I am exceedingly hungry and terribly anxious to eat normal foods in enormous quantities. I had been assuming that this was just a matter of time until I was back to normal, but a recent conversation with one of my wife’s colleagues, a naturopathic oncologist, was not quite so reassuring. Some folks, she told me, are never able to tolerate all their old foods, or not in every part of their mouth; the damage to the DNA of the epithelial cells can be too severe to properly regenerate its old program.

I don’t really know where my mouth sits on the healing spectrum. A few weeks ago my progress had so seemingly halted that I sought professional advice and (very sadly) reverted back to a 2 week trial of a soft food only diet, heavy on healthy smoothies. A week into it, I was ready to give up, feeling like the slightest insult brought out all the same inflammation and pain. A few days later, my tongue suddenly started feeling quite better and speaking was almost comfortable, but my swallowing was more cantankerous. The next day, my throat irritation felt quite a bit better, but my tongue lesion decided it was a fine time to play its “drinking any fluid except heavy cream brings immediate searing pain” trick on me, for the first time in weeks. Since then, every day or two seems to bring a flip-flop of symptoms. Sigh. I admit, I expected a more linear course of improvement, and frustrate easily when healing goes sideways.

Some of this might break down as simply as when it doesn’t hurt much to talk, I talk more, and my tongue gets more inflamed; when my throat feels smoother, I tend to eat a rougher diet, and my throat gets inflamed. Some of it, though, might relate to the mysteries of radiation therapy’s damage to the body’s rapidly dividing cells. I struggle to explain why the hair that fell from the “cap line” at the back of my head in mid-treatment, which had started to grow back soon after treatment stopped, suddenly fell out again to an even higher point on my head (I kept thinking, for some reason, of the Franciscan monks’ tonsure hair-do) about 2 weeks ago. Perhaps my oral mucosa are experiencing similar pulses of cell death or inhibited reproduction. I can’t explain it; I’m just ready for it to stop.

I try not to complain, though, or at least not too much. I was prepared for some tough sledding. However, when I made a date for a reunion with my college roommates in late April, “The Plan” was that this was to be a long week-end celebrated with chatter, beer and pizza, not silence, smoothies and chevre. I’m still hopeful. I like beer and pizza, a lot. I didn’t think I signed up for 2 months of the most careful of diets, and a tongue that rebels from the mere act of talking.

I did sign up, though, for all of it. Even if I can’t ever go home again, in the figurative sense, I am at home now, with my family in Hawaii, and I would do well to be more grateful.

At times, I find myself feeling perilously close to my old self, like none of this ever happened. Although I’ve only gained back 3 or 4 of the 25 pounds I lost, I look in the mirror and somehow can almost see my pre-December body. As long as my tongue is sore and swollen, my voice sounds a bit different, but it’s hardly the sound of a stranger; the other night, with my family over dinner, it was almost perfect! (That didn’t last, of course.) For better or worse, my personality, dark sense of humor and all, is fully intact.

Speaking of “dark” and “humor,” I looked in the mirror last week and found a black, almost unshaveably-thick mustache peering back at me. Since I lost my whiskers early in treatment below the mutton-chops line, it rather stood out. I’ve never seen something so ridiculous on my face!

Yesterday I saw a favorite patient who observed that I was “growing” a mustache. “No,” I protested, “I promise I just shaved yesterday!” — which brought squeals of disbelief and laughter. I remember signing a disclosure notice prior to starting chemoradiation, and recall some mention of possible changes to hair in affected regions… but having the facial hair of a swarthy Armenian man transplanted onto my upper lip??? That was not on the list!

So, yes, life goes on in the months after cancer treatment, sometimes absurd, sometimes poignant, sometimes just mundane. I suppose I was not expecting the time after treatment to be an experience all of its own. It’s a slow process, absorbing the changes to what now constitutes my being.

Overall, though, in most important ways I feel very near to the person I was before embarking on this journey. Physically, I can’t help but long to return completely to that baseline; to make this cancer, as two of my oncologists described it, “just a blip” in my lifetime. Spiritually, however, that would be a wasted opportunity.

Maybe I benefit from having a few reminders of this ordeal. If looking a bit different, or having a mouth to lament, turns out to be “evermore,” I can handle it. I don’t have to heal myself back to my pre-cancerous self. I just want to survive; physically weakened, perhaps, by my experience, but stronger in many other ways.