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.

If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care.

* 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.