i. Aren’t we clever?

Bess and I felt so very smart. In April, we congratulated ourselves for navigating the healthcare system to get two doses of spot radiation that, in conjunction with clinical trial drug PDL1V, likely shrunk, and perhaps temporarily eliminated, the squamous cell carcinoma tumors in my neck that have been strangling me to death for the last year. Between bad scans in March 2024 and entering the PDL1V trial on April 15, two new tumors erupted from the left side of my jaw. Their size made me doubt whether PDL1V would have enough time to work at all, and so we sought adjunct radiation in the hopes of buying more time. Moreover, some evidence shows that the chemo part of PDL1V may make tumors more susceptible to radiation.

Clinical trials prefer that patients get only the treatment offered by the trial. Still, many allow exceptions for things like spot radiation, in order to help patients improve their quality of life and live long enough to see whether the trial drug is working. So Bess and I coordinated between the Mayo Clinic-Phoenix, which, if I have a primary care site, is it, and START-Utah, where PDL1V was being offered, to get up to five doses of spot radiation on the most ominous appearing neck tumors. This is where having lung mets comes in handy: because there were non-neck markers of disease, and the study could measure those as well.

I got a radiation dose on April 20, and another on April 22, but the PDL1V and the radiation together made me so sick that I quit after the two radiation doses. Yet those two treatments were enough: we almost immediately saw liquefied tumor begin draining through a fistula in my skin. The bulky noose of my other, deeper tumors visibly shrank from where they’d been pressing outwards on my neck’s vital structures. It was an incredible reversal. My breathing improved. I could eat most blended foods by mouth, even slightly spicy ones. Bess and I took walks in the evening, anticipating that maybe I’d live long enough to meet our daughter when she arrives in October.

A month of unanticipated optimism culminated in Bess and I traveling to Berkeley for the Manifest conference. We walked miles a day, enjoyed the cooler weather, and met with other internet writing wonks. I met people with whom I’d been trading e-mails and DMs for years. I hoped I was introducing Bess to the weirdos and writers who are her people. In-person access to the world of generative ideas and arguments is slim in Arizona, but now she knows how to find her people remotely. The future seemed to be opening a crack.

If some is good, more must be better, right? I thought about whether radiation and PDL1V together might be able to eliminate the tumors in my neck, so we arranged my remaining sessions of spot radiation. We returned from Berkeley on June 10 and drove straight to Mayo. Maybe I’d get two or three more doses of radiation, another few rounds of PDL1V to really put the screws to the leftover cancer cells, and then I’d enter a future of maintenance immunotherapy. It felt as if we’d not only found, but forged, the secret key that would open the door to the rest of our lives together.

It was my last physically functional day.

ii. Gambled and lost                             

I woke up the morning of June 11 to a bedside trash can filled with blood-tinged tissues. I was breathing, the blood was very light, and it seemed plausible that it was just tissue irritation from the combination of frequent spitting and radiation. I’d just fried my mucosa with a high-powered laser the day before. Bess agreed. I felt terribly off, and like I should quit, but I didn’t. he blood in my throat didn’t return, so, on June 12, I got a second dose of radiation, expecting results and side effects similar to those I’d had in April.

But I crossed some invisible threshold on June 12 that, between then and now, has sent me close to my own death. I rapidly went from being able to eat entirely by mouth on June 9, to aspirating and choking so badly when trying to get food down that I’d likely have taken a couple hundred mg of Oxy out of frustration and misery had I not promised Bess I’d tell her prior to self-termination. The decision about death was almost made for me one afternoon while Bess was at work, when a food slurry sealed off my inflamed airway so that I started to black out before clearing it at the last moment.

I started a course of steroids, which didn’t ameliorate any symptoms. My voice completely disappeared. I lost the little range of motion I had left in my neck. My body produced a constant sticky mucus, coating my mouth and throat all the time. The unpredictability of the misery was, at first, as bad as the symptoms. I’d be sitting doing nothing and with no warning, I‘d start coughing and couldn’t breathe.  I’d try to breathe against a mucous-blocked airway, but no oxygen was getting past the goo.As I tried to draw breath in, slime was drawn further into my neck and lungs, prolonging the hacking-choking process. Later, the unpredictability gave way to an expectation of near-constant mucus plugs. I couldn’t go more than an hour without one. The noose once again tightened around my neck.

Much in cancer treatment is a controlled gamble, and the latest gamble generated extensive, probably permanent, losses, and those losses have shrunk my world into claustrophobia. I can’t tilt my head far enough back to eat any more. I can’t really sleep any more, because something about the radiation seems to have turned on the mucus-slime-saliva-goo function and unleashed a torrent of liquid and semi-liquid that slides into my airway the moment I tilt back even slightly, awakening me via asphyxiation The fall from June 9 to now has been horrible.

I’ve written about how important agenticness is, especially in the setting of complex healthcare, because, outside of you and your family, no one else is going to care—really care—about what you do and how you do it. Bess wrote “Please be dying, but not too quickly: a clinical trial story” to help people better advocate for themselves and navigate the clinical trial system that has kept me alive for the last year. An underlying theme in our writing is “do more, and don’t expect doctors or other healthcare people to do it for you.” Sometimes, however, that principle can get taken too far, as has happened to me.

We ignored a key tenet in many things in life: “More is not always better,” and yet, like a fool, I succumbed to “more is better syndrome.” We both did.

Intoxicated by the possibility of a future, we missed the red flag warnings of the past.

iii. Red flags

There were and are good reasons to think radiation would not be sufficient to eliminate all tumor.

1. Gross tumors in me have already been eliminated twice: once in Oct. 2022 (followed by radiation), again in May 2023 (pre -and post-ceded by pembrolizumab (“Keyruda”—a PD-1 drug)). The cancer returned both times. Cancer cells in this HNSCC are obviously not limited to the visible tumors; a Signatera circulating tumor DNA (ctDNA) test in June 2023 showed some tumor DNA, and by July 2023 we found gross tumor again. For me, gross tumors are not the whole story. One of the pathologic features of my tumor is “perineural invasion,” which means that microscopic tumor has taken up residence within, and is able to travel along, the nerves. If microscopic cancer cells are in my nerves, it’s not only possible, but probable, that they’ve ridden that highway to other parts of my body, awaiting the right tumor microenvironment that will allow them to erupt.

Seagen PDL1V works differently than Keytruda; though it also binds to PD-1, it delivers a chemo payload. But it’s still another PD-1 drug. There was and is a reasonable chance it can’t eliminate all the cancer cells. Which is what happened to me.

2. I was listening to a podcast with Eric Topol and a cancer guy, who says: “Thinking about cancer rather than just sort of a single group of chaotically proliferating cells to a vision of cancer interacting both locally within a microenvironment but more distantly across organs and how organs communicate with the cancer through neuronal networks, for example, I think is going to be the next big challenge by setting the field over the next decade or two.” 

That’s vital. Given point #1, it’s pretty clear that my cancer is not just “of the tongue” or now “in the neck.” It’s distributed. More radiation into specific places in the neck wasn’t likely to get me to the complete response I’d imagined. I’d injected the full dose of hopium. I was blinded by optimism.

3. On June 18 Bess and I saw the new Mayo head and neck onc, Dr. Chintakuntlawar. He is cognizant of what’s going on, unlike Mayo’s previous head and neck oncologist, a doctor named Savvides who was an excellent counter-example to Mayo’s tagline that “the needs of the patient comes first.” Dr. C observed that that PDL1V is an experimental immunotherapy, so there’s little to no data. In other cancers, something like 30 – 50% of cancers recur when patients discontinue immunotherapies. When those people get back on the same immunotherapy, it often fails. Stop the immunotherapy and die.

None of these lines of evidence is final or dispositive, but, taken together, I wish I’d not been so enthralled at the possibility of complete response. Like Gandalf too-slowly realizing the nature of Saruman, we overestimated the likelihood that something being good once would continue being good. The same agenticness that has kept me alive for the last year became the thing that is killing me.

But every decision we’ve made has been a gamble. Every study drug is potentially debilitating. Every next step a potential dead end. I could’ve had an allergic reaction Petosemtamab, the first study drug I took, and anaphylaxed back in September, dropping dead on the spot.

Repeatedly dodging bad outcomes might have made me recklessly think the dice would keep rolling in my favor. Bess says that she thought of the common risks that came with radiation, but focused on how spectacular the reward for those risks might be. She also says she never anticipated the risks being so rapid and horrific, so singularly destructive. She was thinking of the potential of future necrosis to my jaw bone, not the wholesale, immediate ruination of my quality of life. The risks of doing anything experimental can be severe. The risks of doing nothing certainly are. That doesn’t make bearing the weight of the decision any easier. The whiplash of my change in fortunes is difficult to express.

iv. Troubleshooting

Since June 12, we’ve been trying desperately to troubleshoot my ever-worsening complications. Because of the constant aspiration whenever I tried to eat, I began dropping weight. At first, most of that loss seemed to be from water, so Bess gave me IV fluids at home (one bonus of living with an ER doc who has a medical supply account). Something about PDL1V seemed to perpetually dehydrate me, though I don’t understand why, or where all the infused water goes. As my swallow worsened, it became obvious that I couldn’t literally inhale nutrition as a means of survival; I was becoming grossly malnourished. 

In June, I went to Mayo for a swallow study performed by heroic speech pathologist Jessica Gregor, and, if I went slowly, my swallow appeared okay, which was at odds with how I felt. There was, however, what appeared to be “webbing” in the throat; the webbing is scar tissue that creates perforate barriers in my esophagus. Perhaps the webbing slowed the funnel, so liquid backs up, and then I aspirate. Maybe my acute symptoms, though horrible, might be secondary to early radiation damage and inflammation, and not permanent? The gastroenterologist, Dr. Bering, scheduled me for an esophageal dilation for July 1, in the hopes that it would solve the aspiration problems and prevent me from needing the awful PEG tube replaced.

Unfortunately, through June my weight and my symptoms worsened acutely. Day-by-day, I was in denial about how bad things were becoming, and I kept looking for signs that I’d be able to swallow normally again. Still, long before my dilation, it became obvious I’d starve to death before the cancer killed me. A few days before my dilation, Bess called Dr. Bering to let her know the PEG tube I’d been trying to avoid was now necessary to keep me from dying. Could we do both? Incredibly, Dr. Bering was able to setup a PEG tube replacement the same day as the dilation. One single anesthesia session, with two small procedures: outside usual hospital protocol, and yet something the doctors were thankfully willing to do. Because my intubation was difficult, I ended up staying overnight in the ICU.

A bronchoscopy performed that night by one of Bess’s colleagues as a favor revealed a Pseudomonas lung infection that required a course of antibiotics (this seemed like a minor detail at the time: subsequent events show it not to be). Then, because I terrified staff with a choking episode of the sort that had become routine since June 12, I ended up spending another night, then another to trial a CPAP (to say that it didn’t help is an understatement). Somehow a simple overnight from July 1 – 2 turned into July 1 – 4.  

On one hand, this was an incredibly efficient stay: three procedures in one day with one intubation.  On the other, a prolonged admission —really, anything more than a night—comes with further deterioration. My weight continued to drop because I wasn’t able to get adequate tube feeds (hospitals don’t seem to understand how to manage anything that isn’t corn-syrup based Nutren 2.0).

Even now, while I’m getting around 2200 calories a day through the PEG, my weight continues to ominously drop. Maybe the tumors are taking all the calories. Maybe starvation won’t kill me before the cancer does, because the cancer itself is starving me. Either way, this tumor wants to, and almost certainly will, prevail.

v. Resolution

Since that hospital visit, nothing has seemed to stabilize. My body is still a mucous factory. My weight, despite pushing food through the PEG, is still dropping. My voice hasn’t returned. My head and neck hurt all the time, made worse by the incessant cough. I’m still spitting up green, infected-looking sputum.

Since discharge I’ve been on two rounds of steroids, a panoply of pain medications, antibiotics (which we just learned yesterday my pseudomonal infection is resistant to), and all sorts of nebulized medications. Nothing is righting the ship.

Sometimes you try so hard and it doesn’t work. That’s what Bess and I have been doing, and the grimly funny thing is that by trying so hard for the spot radiation, we actually had the exact opposite of the intended impact.

It feels as though the problems have compounded, so that for each that is improved there are still five more to take its place. Every moment is pain, and, despite Bess’s hopes that it will prove otherwise, I don’t foresee my situation turning around. Small improvements, yes, but not enough.

Every day passes in a painful gray blur. I do nothing but survive. I barely even survive, because I’m still losing weight. I’ve barely been able to write. Headaches consume my days. I can’t wake up properly. Foggy-headedness never abates. The mucous—I don’t know how to properly express the relentlessness of the mucous—never abates and constantly threatens to suffocate me. It’s an endless fount of misery that appears to have been switched on by the radiation.

This is probably the last essay, unless something dramatic changes. The human body isn’t designed to survive like this. My whole life is pain and managing goo. That’s it. There is nothing. Nothing except slime, mucus, liquid, coughing, hacking, tissues, and pain. There is no time, space or energy for anything else.

There’s a universe in which this second round of radiation only further beat back the tumors with side effects that were temporarily debilitating, but not permanently so; there’s another one in which the PDL1V kept working for months, so that the decision of what to do next, if anything, was delayed until after Bess gives birth to our daughter; Another, still, where the PDL1V never worked and I switched trials while I still had the strength to do so, and was one of the lucky patients in whom BGG-3055 has worked for almost 8 months. But I’m in this universe instead: the one in which the radiation has so destroyed my small reserves of strength and energy, weight and hope, that the likelihood of having enough energy to make it to a new trial in a week seems impossible. I can’t even walk down the hall without extreme pain and exhaustion. The two months it will take to welcome my daughter into the world may as well be an eternity. Every day is pain. And the reward for surviving the pain, is more pain.

It’s possible that things might still miraculously turn around (and it’s also not always possible to predict what the “right” amount of treatment is). Bess maintains hope enough for both of us, though it’s a frantic, pleading hope that she admits is frequently illogical and based mostly on love and desperation. But she’s laser focused on the slim chance science and physiology may yet come through for me. The limited range of motion in my neck is likely from edema and not irreversible fibrosis (but there’s also new, palpable tumor on my right jaw). The antibiotic for my pseudomonal lung infection may help, and a few days of good sleep and increased calorie intake may, too. They may, but they most likely will not. I’ve seen my predictions and anticipations of doom falsified so far, but this time feels different. Bess, despite her impulse to search for answers to the seemingly unanswerable, feels it, too.

I feel an existential completion. Wanting to stay and being able to stay are not the same things. No matter how agentic I’ve learned to become, not every problem has a solution. Every problem does, however, have a resolution. I think my resolution is close.

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If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care. Anything that remains after I am gone will go to Athena when she is born in October.