I’ll admit a disappointing answer up front: I don’t know. Because I’m dying, I’ve been saying goodbye a lot, but even after a bunch of practice I still don’t know how to say it. Humans have to learn how to say all sorts of unpleasant and unhappy things; as I write this, terrorists have broken into Israel and murdered hundreds, if not thousands, of civilians. Someone will have to call their families and say: “Your brother | sister | son | daughter | cousin | friend is dead.” One Israeli 13-year old’s whole family was murdered. Someone had to tell him. And then time continues its perpetual beat, and the people who’d been living and animate will transition from the small percentage of humans who are alive to the much larger percentage who are not. I get the relative luxury of saying goodbye, of thinking about how it should be done.

I wrote in “How do we evaluate our lives, at the end? What counts, what matters?“:

One estimate finds that about 117 billion anatomically modern humans have ever been born; I don’t know how accurate the “117 billion” number really is, but it seems reasonable enough, and about 8 billion people live now; in other words, around 7% of the humans who have ever lived are living now. I’ve had the privilege to be one. At current levels of technology, however, the gift must be given back, sooner or later, willingly or unwillingly, and sadly it seems that I will be made to give it back before my time. I have learned much, experienced much, made many mistakes, enjoyed my triumphs, suffered my defeats, and, most vitally, experienced love. So many people live who never get that last one, and I have been lucky enough to. The cliche goes: “Don’t be sad because it’s over; be happy that it happened.” That is what I’m trying to do, at some moments more successfully than others. I try to focus on those ways I am so lucky and blessed, but I am often failing.

Despite not knowing how to tell people I’m dying, I feel like I have to, because the alternative is worse; I’ve heard of cancer patients who tell no one, and then the shock strikes their friends and family at the end. All else equal, I prefer to do it via essay: one gets a fullness and richness that speech or text message seem to lack. There’s a consistency, too, when sharing the same document with friends and family, in that everyone I love understands what I’m thinking and feeling. Probably I should read these essays aloud and upload them. Overall, I’ve learned to do it plainly and straightforwardly, if possible. It’s a stunning blow to most people who know me, but it’s better delivered with minimal rhetorical cover. Then there is time for the rest. I’ve told many people that I’m dying and yet I still feel like I’m no good at it.

I may have learned this “do it now, and fast” lesson from Bess: she told a story called “How to say it,” in which she describes her (sadly extensive) experience in telling people grisly news: your abdominal pain isn’t gas, it’s cancer; the cancer you thought you’d defeated is back and has metastasized everywhere; the infection that was in your bladder is now in your blood; there is nothing more medicine can effectively do for you other than refer you to palliative care; and, most notably, with declaring death:

I take your family to a quiet room, with Kleenex. Then I say the word “dead.” Not “expired,” because you were a person, not milk. And not “passed on,” because families always want to believe you were just transferred to another hospital. “Dead.” I have to say it.

That’s all they really taught us in medical school about how to deliver bad news. A one-hour lecture. So we learned by watching our teaching physicians. We were their constant audience in a sort of theater of the bereaved: lurking near doorways and family rooms and the hospital’s ER, noting how soft they made their voices, when they patted someone on the back, how much technical jargon did they use before getting to the word “dead.”

When you train to become a doctor, they don’t really teach you about death. They tell you how to prevent it, how to fight it, how to say it—but not how to face it.

Doctors are often the border agents of life and death. A lot of modern, industrialized people, like yours truly, don’t have a lot of direct experience with birth and death. Fertility rates are tragically low (housing prices and exclusionary zoning stifle them), and most of us avoid death where we can. My family is tiny, so I missed the passing of elderly relatives when I was young. Bess is an emergency medicine doctor, though, and so she often has to say it. The word “dead” is key. She doesn’t take on the emotional challenge of the dying, though, because to do so would render her ineffective at preventing premature death as best she can:

The first time I had to be the one to break bad news to a family, I was in my last year of residency training. I remember having to do it in the patient’s room, because his adult daughter refused to leave his bedside. So I said, “I’m sorry. He’s dead. We did everything we could.” Then I was supposed to give her a few moments alone, but I was paralyzed. Rooted to the spot by a feeling of failure and loss. When I looked at the bed, I was imagining what it would be like if that was my father. My supervisor must have realized what was happening, because she grabbed me by the arm and dragged me out the door.

“Don’t you ever do that again,” she said. “Don’t pretend that grief is yours when it’s not. One day, you’ll be where she is. But if it’s not the person you love on the table, say you’re sorry, mean it, and then you have to walk away.”

Her emergency medicine attending physician was right, and now Bess is, in a sense, where that patient’s family was. At work, she’s learned to deliver the bad news calmly but firmly, stamp out any ill-conceived hope born of desperation, and offer to get social work or the chaplain in to help the family. Then she goes onto the next patient, who might have come in for something as minor as an ingrown toenail. Their grief can’t be hers. Patients who get bad news about cancers get passed to oncologists, who have to be tragically familiar with saying goodbye. Lots of doctors have to figure out how to say it.

I like the way Dr. Hinni did it: when I got the horrible news about the recurrence, Bess or I texted him with the news. Telling him seemed polite: he’d done so much impressive work on me, and so we thought he’d want to know how the story turns out. We messaged him on Friday, July 21, and the first chemo round was scheduled for Monday, July 24. Our friend Fiona flew into town for it. Dr. Hinni must either not have been operating that day or had a relatively minor operation—I was once, in October 2022, a relatively minor operation by his standards—because he stopped by in the afternoon. I was snowed under by anti-nausea drugs and so was asleep when he got to the infusion center; I woke up and said hi. He may have been holding Bess’s hand. He came over and held my hand and said he was sorry. I understood: he’d done everything he could.

I asked a futile question I was pretty sure I already knew the answer to: “I assume there’s nothing else to do surgically, right?” My neck already felt like I was in a tight noose. The first surgery and then the radiation had taken so much out of me. The second surgery felt like it had taken whatever margin was left. Dr. Hinni confirmed that, no, he couldn’t do anything more: any attempt to remove the tumors would likely spread them further. He understood, and I understood. I don’t know how long he’s been a surgeon, but I have to think he’s in his 50s, and thus he’s seen a lot of patients whose cases didn’t go the way he’d like. Beyond the confirmation of the obvious and the statement that he’s sorry, there wasn’t much to say. There was the comfort of a hand being held, and the sense of tragedy, and then he wished us well and went out into the world, to help those who can still be surgically helped.

There’s something to the low-speech approach.

“Words are inadequate” many friends and acquaintances have (correctly) said to me; they know I’m a writer, but I don’t think that’s why they say they don’t have the words. I agree with them about how there are no words, apart from the simple and elemental ones, like “I love you” or “I know I will be gone, but I will also miss you.” The big elemental feelings don’t handle contractions, I guess. Maybe that’s one way to say goodbye: with fewer contractions, and more feeling in the voice. “Feeling in the voice” is hard for me, because, without my tongue, I sound like a goose being strangled whenever I speak, or a trumpet manipulated by a poor musician.

Bess claims that I actually have more vocal modulation now than I did before, an assertion I’m extremely skeptical of. She says—and I mostly deny—that I had a tendency to be monotone, responding often to her sharing of exciting news with the reply, “great,” said in a tone similar to that of someone learning their sexual prowess is best described as “resoundingly okay.” Bess further claims she could identify my emotional timbre based on other cues, but that vocal tone was never my primary form of emotional conveyance.* Yet back when I still had a tongue and read novels to her at night to help her sleep, the voices that I gave to the characters often made her laugh. (“Yes, but you made their voices purposefully different than your personal default,” she protests when she reads this.)

The point is, even today Bess hears subtleties in my voice that I feel are overshadowed by the struggle of enunciating the phonemes themselves, especially with no tongue to help me phonate. Bess hears me more than anyone else and understands the sounds I emit better than anyone else, through pure exposure. Much like parents can understand the seemingly unintelligible squawks of their toddlers via practice and exposure, Bess will translate what I’m saying to those who can’t make out the syllables I’m trying to pronounce. How are they supposed to understand my tone when they can hardly understand my words, garbled by a lack of tongue? Somehow, Bess can. Further complicating the difficulty of saying goodbye is the physical challenge of speaking.

There’s the difficulty of how to find the right words to say goodbye and the things that I don’t want to leave unsaid before the end. Maybe my struggle with physical speech is one reason I feel like I get closer to the core of what I’m trying to say when I write the email updates to friends and family—or these essays. I don’t have to stop to repeat myself, or have Bess explain what I said, or manage the frustrations of premonitory small talk (a while ago, I declared a “moratorium on banality”). Speaking is also physically painful, and although I have a “use it or lose it” approach, there’s still an opportunity cost to conversation. Writing the right words also means that the people they’re intended for can read them now, and again later, whether I’m here or not. They’re less ephemeral than a chat, though I’m aware too that they often don’t generate the same feeling as spoken speech. Yet some written words generate a lot of feeling; for example, Bess has a little shoebox in which she’s kept every card and note I’ve ever written for her. I imagine she’ll go back to those in the years to come when she wants to feel my love for her. She’ll probably re-read these essays too, as they’re a kind of summa of my life and feelings and sensibility. Textually, there will always be a chance to have another goodbye, in a way that spoken words can’t achieve (unless they’re recorded, I guess). My words might be inadequate, but having them is still better than not—both for me and for those who I leave behind.

There are other ways I’ve tried to say goodbye: I’ve been making videos for Bess. She’s given me a list of things she things she thinks she’ll need to hear (figuring out what those things might be is a harder project than she anticipated), so that she can pull up one of the short videos I’ve made for her on the topic and listen to it when she needs to hear me and hear me telling her she can do it. I’ve made videos for when she’s feeling lonely, or when she needs encouragement, or when she can’t sleep.

My siblings asked for a copy of my signature, and then tattooed it on their forearms so that I’m somewhat literally “signing off.” Rachel and Sam say this way, I’ll always quite literally be with them.** And this month, Bess and I are (hopefully successfully) making embryos for IVF so that, while I am taking leave of this life, we’re also making a new one and sending the beauty of human consciousness into the future. This is a particularly hard way to say goodbye, but it’s also a hopeful one. There’s a future to look forward to, even if I’m not in it in the way that Bess and I anticipated, or hoped.

There are probably more ways to say goodbye that I haven’t tried, or thought of, and I’m open to hearing what people need. If friends and family have something in particular that would satisfy them, and I can manage it, I’ll do it. Saying goodbye isn’t something that I have to figure out solely by myself, even though I’m the one going. I said in the essay about psychedelics easing the path to the other side that I find myself comforting others about my impending demise more than I get comfort from them. Goodbye could be the opposite: I take more than give. Goodbye is relational. It’s something that is figured out between myself and the person—or people— I’m saying it to. Death is forever, but the memory of me and of saying goodbye will live on as long as the people I have known and love do.

So that’s my take on how to say goodbye: I said I don’t know at the start this essay, and I still don’t (really) know at the end. If you know, let me know. I’ll be here for a bit, but soon I’ll be saying those truly final goodbyes and then it will be too late. So don’t wait: I don’t have time. Could be that you don’t, either. None of us do, not really, which is why you should do the thing you’ve always wanted to do while you can (provided it doesn’t harm other people or have significant negatives). On July 21, I didn’t know whether I had only weeks left to live, and so maybe I jumped the starter gun on saying goodbye. But I wanted to tell the people who are important to me what I felt while I could. Tell people you love that you love them. Encourage them to live in blessedness and to live generative lives. Doing so won’t take many words, but “I love you” is what matters, in death as in life.

Maybe goodbye is not really something that’s said, but something that’s done, and I’m trying to do goodbye, which seems to be done most often speechlessly, sitting with people, our thoughts on one another but few words coming out, because those words don’t work. I’m reminded of a scene when, at the end of The Lord of the Rings, the elves are passing out of Middle-earth forever, and with them will go Gandalf and many fair things and the memories of the Elder Days; after the fall of Sauron, Celeborn and Galadriel are traveling with some of the remaining Fellowship members:

They had journeyed thus far by the west-ways, for they had much to speak of with Elrond and with Gandalf, and here they lingered still in converse with their friends. Often long after the hobbits were wrapped in sleep they would sit together under the stars, recalling the ages that were gone and all their joys and labours in the world, or holding council, concerning the days to come. If any wanderer had chanced to pass, little would he have seen or heard, and it would have seemed to him only that he saw grey figures, carved in stone, memorials of forgotten things now lost in unpeopled lands. For they did not move or speak with mouth, looking from mind to mind; and only their shining eyes stirred and kindled as their thoughts went to and fro.

I’m not a grey figure carved in stone or a memorial of forgotten things now lost in unpeopled lands, but this part of my life feels a lot like a living memorial to the rest of it. Though Bess and I are, hopefully, starting vital new works, there’s a strong sense that I have far more past than future. A miracle is possible, but I’m assuming I’ll remain in line with the statistics describing my disease progression. And so I’m trying to say goodbye, even if that speech is often done not by speaking from the mouth, but by being with friends and family and each of us looking from mind to mind, and wishing that the end were not here so prematurely.

Sometimes words work, as when Bess and I sealed our covenant with “I do” before the night of the total glossectomy surgery that she justifiably thought might take me from her forever. It didn’t, though, and that’s why we’re in what soccer fans call “added time.” Or, as I’ve been calling it, our “bonus time.” Time I’m using as best I can, despite the sense that the words “as best I can” still aren’t adequate, and the cruelty of premature departure cannot be assuaged.

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* Often I show affection via cooking: that I can’t eat anything apart from blended slurries hurts particularly in my case.

** My brother, Sam, wrote this:

The location itself was also deliberate, at least for me. Those who survived the Holocaust often pointed to their arms when saying “never forget.”

When people see my right arm, they often ask: “What’s the meaning behind those tattoos?” And I tell them: one of them is the Tree of Life encircling the world, and the other is the Seed of Life from sacred geometry/eastern mysticism. The theme of my tattoos on my right arm was always supposed to be representative of life. But there is no life without death, and now I have your signature there too.

When people ask me, “what’s that scribble on your forearm?” I can now answer: my brother’s signature. And then I will tell them about you, who you are (were), who you aspired to be.

I guess it’s my way to never forget.

The characteristic petosemtamab rash covers my face; a tumor is visibly erupting on my neck.

I stand on the scale and it flashes 137.8 lbs, which elicits cursing because 137.8 lbs is dangerously low and I’ve been trying, futilely, to gain. Though I’m dying at an accelerated rate from metastatic squamous cell carcinoma of the tongue, inadequate calorie intake risks accelerating the death timeline, which makes the day-by-day eating stakes high. Most of us eat in ways that are optimized for pleasure and convenience, not longevity, and we eat too much food because it’s delicious. When we down that extra bowl of pasta and grab that cookie, we don’t think those choices will be fatal soon. For me, though, there’s a tight feedback loop between missing scheduled calorie intake and hitting a dangerously low weight that leads to body shutdown.

I have to remind myself that missing meal injections—most calories are infused into my body via a peg tube that inserts directly into my stomach—will quickly become a serious problem. Chemotherapy especially leads people to under-eat, and, while I don’t have more chemo immediately scheduled, I’d be surprised if I’m totally done with chemo. Surgeries and chemotherapy have, together, severed much of the mind-body connection between food and me, and the results are weird, since I don’t feel hunger despite losing weight. Most of us, I think, live within some kind of tolerable harmony with our bodies, as I did prior to losing my tongue and neck lymph nodes and much else; instead of fighting some external foe, I feel like I’m constantly fighting myself—and losing.

I feel like I’m losing against my body and slowly losing my ability to live. A year ago I weighed 175, but since that time I’ve been sliding into the abyss of illness. Though I try to get out, each step is like a step into scree, such that even the efforts to get out of the abyss merely causes me to slide further in. It’s a peculiar experience: one day, before the first surgery, I’m healthy, and then there’s a brief interregnum (like, I imagine, a city that knows the war will soon arrive), and then, because of the surgery and recovery time and subsequent treatments, I’m never healthy again. There are a few moments when I seemed to be improving, but never back to the pre-surgery baseline, and my new “baseline” keeps changing for the worse after each major surgery or new treatment. However much I try, cancer and responses to cancer beat me down and make a normal relationship with my body a memory.

I got diagnosed with squamous cell carcinoma of the tongue in Sept. 2022, followed by the removal of the initial 9mm tumor on Oct. 20. Radiation therapy followed in December and January; radiation therapy didn’t work but, predictably, caused unwanted weight loss. That weight loss wasn’t so big a deal until a routine PET scan on April 26, 2023 showed a hot spot in my neck that eventually and tragically led to a total glossectomy (“total glossectomy” is the fancy medical term meaning “removing the whole tongue”). During cancer and similar medical maladies, many if not most people feel their body is betraying them, and I’m not excepted. Until that total glossectomy, I managed to maintain weight effectively enough given the circumstances.

The total glossectomy surgery was an order of magnitude worse than anything I’d ever been through, and I didn’t expect it, either: I thought I would lose half my tongue, not the whole thing. But the tumor had burrowed into the blood vessels in my tongue, meaning that the whole organ had to go. The surgery’s immediate aftermath was and, as of this writing, still is the darkest period of my life; during the first recovery week in the Mayo post-surgery ward, I felt like I should be dead despite being technically, formally alive. The sense of living death made me not want to exist at all. When I went into the hospital on May 25, I was close to 160 lbs, despite that radiation treatment on my head and neck. I apparently did relatively well at radiation (I say, as if it’s some personal virtue rather than random chance): the inside lining of my mouth, tongue, and throat didn’t slough off, and, with enough oxycodone and viscous lidocaine for the mouth, I could eat some chia pudding and some Kodiak cakes dipped in maple syrup. To the surprise of the radiation oncology team, a few solid or solid-ish foods were easier than smoothies, which burned.

Between January and May I tried to eat more than I typically would, and I trained with barbells, yet I didn’t gain much weight. I wasn’t worried, though, because the ear, nose, and throat (ENT) surgeon who performed the October surgery and the radiation oncologist who supervised what you’d expect given his specialty thought I was cured. I assumed they, and the Mayo Clinic tumor board at which my case was discussed, would be right. I’d not read things like this: “Most patients are diagnosed with a locally advanced disease and treated with strategies integrating surgery, chemotherapy, and radiotherapy. About 50% of these patients will experience a recurrence of disease.” I’m not sure what qualifies as “locally advanced,” but, although my tumor showed evidence of “perineural invasion” (meaning: it had invaded nerves in the tongue), it hadn’t spread to lymph nodes in the neck. I was considered stage 2, only because the tumor very slightly extended into the floor of my mouth. Not all news from the first surgery was good, yet my presentation wasn’t as bad many people’s, and I didn’t realize that recurrence is more common than I’d been led to believe.*

By the time I got out of the hospital on June 5, after 11 days and without a tongue, I weighed just 146 lbs. Getting calories in was that hard. For the first days after surgery, a tube went in my nose and into my stomach, and an edible food-like substance called “Nutren” or “Nutren 2.0” could be injected through the nose tube. Being fed through the nose is as comfortable as it sounds, and injecting food that way reliably triggered nausea, even with zofran, so I didn’t get many calories. Imagine the feeling of swallowing nasal backdrip as the only way to access nutrients and you’ll have a sense of the “nasogastric tube” diet experience. Early on, too, I was just barely hanging on, and food injections weren’t a top priority. Maybe a week after the surgery I got a PEG (percutaneous endoscopic gastrostomy) tube placed in my stomach, but the nausea persisted—I think I’d gotten out of the practice of eating.

Once I got out of the hospital, the Case Managers at the Mayo Clinic Phoenix, where I was being treated, couldn’t get me the infusion pump I needed, and Bess and I made a critical mistake in not buying one ourselves. For vital equipment, I discovered the hard way that it’s better to buy an extra one than risk not having it. A “Moog Infinity Pump” is the right pump, it turns out, and costs about $600—yet it took us two weeks to get one. The ordeal of getting out of the hospital with a new PEG tube, a tracheostomy tube, and limited preparation for everyday life is too long and elaborate to get into here. But during those two weeks I wasn’t getting enough calories, and I dropped to around 137 lbs. Each drop seemed shocking and dangerous—how much more could lose before I went into organ failure? one pound? two? five?—and yet I remained corporeal. Now I’ve stabilized in that 140 lbs range—still far too light, but, for the time being, slightly functional.

Why can’t I gain weight? Bess speculates that my tumors may be highly catabolic, which means that they’re using a lot of calories and essentially stealing them from the rest of my body: “Cancer-associated malnutrition is driven by reduced dietary intake and by underlying metabolic changes (such as inflammation, anabolic resistance, proteolysis, lipolysis and futile cycling) induced by the tumour and activated immune cells.” So it may be that, just as I’m at war with my body, my body is at a civil war with itself.

I mentioned that the mind-body connection was, if not severed, then attenuated. I don’t or rarely feel hunger. I don’t feel satiation, which is the other side of hunger. In late July I learned to swallow slurries again, which meant I could get some of the pleasure of taste, but everything I swallow has to be mixed with enough water for me to get the food down, and the water reduces calorie density. Sweet food, more than savory food, seems to activate the taste receptors that remain (in the back of my throat, esophagus and hard palate). In the war against the tumors that are extracting calories and nutrients from my fat and muscle and food, I have to inject calories and eat, but it’s an intellectual knowledge, like knowing I need to practice with spaced-repetition software to augment long-term memory, or someone who is wavering on their instrument needing to pick it up and play. The immediate animal sense of hunger is absent.

The food cravings that have characterized my life, and most people’s lives, don’t exist, or barely do; today, when they come on, I have to suppress them. I can’t eat pizza. Bess did pick up a pie from Doughbird and blended it, but the result didn’t satisfy. I can’t handle spicy, so the noodles, buns, and other food at nearby Din Tai Fung in San Diego are probably out. At Taste of the Himalayas, I’ll have to ask for the food not to be spicy. Anything that depends on texture doesn’t work that well. The VitaMix’s real utility is turning things like broccoli and cheddar into the same texture as pudding, once enough water is added to the blending container. Food blended into a slurry is far better than not being able to consume anything by mouth, but it lacks the satisfactions of normal eating. Food has become a major art form in the United States, perhaps taking the place of visual art (which descended into visual noise decades ago: industrial design has supplanted “visual art”) or music (which has become ubiquitous and caught in re-treats), and it was an art form I happily participated in. Now I’m excluded from it, permanently. Not having food cravings that can be satisfied sets me apart from the typical life experience, too. Most Americans are trying to keep their weight stable or lose weight; it’s the cancer patients like me who struggle in the opposite direction.

Most days I feel gnarly, which further discourages me from eating. I want the headaches and exhaustion to go away; the persistent, shooting pain that’s been brewing and expanding in my right ear distracts me even now, as I write this sentence.

I can’t lift weights much any more either. I used to go to the gym a couple times a week, alternating two major lifts with one or two minor lifts. It worked well enough, though I never got really good and have struggles with hamstring, hip, and lower back mobility—too much time sitting and not enough time stretching. Since May, I’ve spent more time in beds and sitting on couches than I ever have before. Keytruda seems to exhaust me. Life seems to exhaust me. Maybe it’s the tumors stealing all those calories that exhausts me. Whatever it is, the burning drive to lift weights has abated, along with the sense of my future.

I sit too much. A lot of what calories I get in me come via pump, and the pump takes half an hour to an hour to inject food. Sitting seems like the most natural position when this happens. But then I get the muscle, joint, and ligament problems that come from sitting. And my left quadricep hasn’t recovered from being raided for material to make the “flap” that takes the place of my tongue. I’ve tried to lightly jog to make a crosswalk light, and my left leg nearly buckles underneath me. I can’t pant properly through my mouth. Maybe this is a gym-related issue, but my mouth dries out almost instantly when I try to breathe through it. The bodily indignities add up.

The mucus in my throat has been bad enough to make me consider auto-termination. It makes eating worse, because food gets caught in the mucus, which chokes me, sometimes to the point where I actually can’t breathe for an alarming period of time, and then I have to hack the mucus up, and I can see the swallowed food caught in it. No matter how much water I drink, no matter how much I nebulize saline when it comes time to hack up the morning’s mucus, I can still see flecks of whatever I ate the night before in it.

There are a lot of moments in cancer treatment when you don’t know whether you’re experiencing victory or defeat. The weight issue is one of those: I celebrate when I see it peak above 140, and yet I can’t seem to get it sustainably, consistently above there. The tumor seems to increase metabolic demand and thus consume the calories that should be going to the rest of my body.

Despite all I’ve written above, in some ways I was well-prepared for the physical misery of cancer and cancer treatment. For the last 15 years, I’ve eaten minimal sugar or simple carbs like bread. In high school and college I ran; in the last decade, I’ve shifted to lifting weights, though poor mobility meant persistent struggles with the squat and deadlift, however—it turns out that some people, like me, can’t turn decades of time sitting or running into good squat mechanics without mobility training. When real physical adversity came, I could lose a lot of weight and still physically function. As hard as walking was that first month out of surgery, I was better prepared than most people for walking by the physical training preceding surgery. My struggle against my body is brutal, and yet likely easier than the average person’s because of the reserve I built before becoming ill.

I wish I could find some poetic, beautiful way to end this essay—an epiphany, a wrapping up, a hopeful note on the triumph of the human spirit over tumoric adversity. I can’t right now, though, maybe because I’m too tired, too wasted away, and too unlikely to ameliorate either condition before the end. The struggle will go on, but I’m pretty sure there’s no victory for me. At the end of The Lord of the Rings, Frodo is too damaged by the weapons and devices of the enemy to stay in and enjoy the Shire, which he spent six books and 500,000 words attempting to save. He takes ship from the Grey Havens to Valinor, where he can find peace. I don’t live in Middle-earth and for me there no Grey Havens, no ships, no Valinor, and, in all likelihood, no victory over this foe residing in my neck and lungs. That is my burden, and I try not to dwell on aspects of it that will not change, but I also acknowledge the unabating misery that wars with the love for and connection to other people, the things which keep me here even when I long for a peace that I darkly suspect will come only one way.

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* I’m now in a clinical trial that’s testing a bispecific antibody called “petosemtamab.” If you’d like to see a lot of preliminary data on petosemtamab, this presentation from April 2023 offers it: 29 out of 49 patients were still alive after 11.5 months, which is an amazing rate in recurrent / metastatic (R /M) HNSCC. The goal, I think, is to be able to offer petosemtamab, and/or Moderna’s mRNA-4157, before and after the first surgery—upon or close to initial patient presentation. That should reduce recurrence rates, and petosemtamab and mRNA-4157 don’t have the toxicity profile of chemotherapy or radiation, so they should be able to be given even to patients like me, who seemed to be at lower recurrence risk. It’s too late for me, but I hope there are many fewer “total glossectomies” in the future than there are now, thanks to early petosemtamab and/or Keytruda/pembrolizamab.