On Wednesday at Mayo I got unscheduled CT scans, and they show that the squamous cell carcinoma tumors in both my neck and lungs are (mostly) smaller, relative to August 13. There are some new tumors in the lungs,* which is obviously not ideal, but the shrinkage of most tumors is really good. Two tumors in my neck appear somewhat larger, but that could be secondary to the biopsies performed on those tumors as part of the UCSD petosemtamab clinical trial, since biopsies can cause an inflammatory response that can’t be distinguished from new tumor burden via CT.

One other significant piece of evidence supports the theory: that I remain headache-free is a mark in the “this is likely inflammation” column. Regular readers may recall that I didn’t have any treatment for most of September, due to the six-week washout period 🤮 required for the petosemtamab trial, and by the end of that washout period I was getting ominous headaches that later resolved without intervention, apart from the petosemtamab. 

Bess sent a CD containing the CT scan data files to UCSD, because I assume Dr. Sacco, my oncologist there, will want the UCSD radiologists to look at them too.** It’s conceivable that the UCSD radiologists will have a materially different read than the Mayo ones, but I’d guess differences will be small. Considering how many of my guesses about the cancer have been wrong, I should probably quit guessing, but I’m still doing it. If my cancer were a prediction market using real money, I’d be broke by now from getting so much wrong.

“But Jake,” you might ask after reading the preceding paragraphs, “you said previously that your CT scans are scheduled for today? What gives?” 

I’m glad you ask, or might ask, or accept me putting words in your mouth for purposes rhetorical: on Wednesday morning I woke up and, per the usual, trundled half-asleep to the kitchen. As I’ve done hundreds of times since the May surgery that took my tongue, I drank some water and expelled the mucus plugs in my throat. I grabbed the faucet to wash away the results, but said results woke me right up because I saw something bizarre: the mucus plugs were…red. Red? Why red? Is that blood? Sure looks like blood. Looks like blood came out of my throat. There more where that came from? What’s the cause? 

I called to my personal physician: “Can you come look at something?” Much later, Bess said that “Can you come look at something?” has become her least-favorite query, especially if it’s coming from the bathroom or, now, the kitchen, because it usually means something confusing or bad (or both) is on my body, in my body, or coming out of my body. In the moment, Bess examined the bottom of the sink and said, authoritatively, indeed with all the authority that comes from medical school and a decade and a half in medicine: “That looks like blood.” I concurred, though without her authority. If you’re the sort of person who wants to see for yourself, scroll to the very bottom of this essay for the pictures. They’re deliberately way down there so that people who don’t want to see them are less likely to.

She dropped immediately into doctor mode and started quizzing me, to the point that I felt like I was a multiple-choice medical exam. I told her: no pain, no trouble breathing, no idea apart from the obvious where it’s coming from. She used a phone light to look in my mouth. Nothing. For the first time in a while, she didn’t poke anything with or without warning me first. Possibly, because she was afraid of irritating whatever was the source of this morning’s exciting new symptom. I spit some more, hacking much more gently this time, and we didn’t see much that was bloody, but we didn’t have a cause. I tasted a little blood in the back of my throat. I’ve probably not become a vampire with an insatiable desire for humans, unless the vampire part of my nature also includes amnesia (Bess’s reports of fang marks on her upper arm are patently false: fake news, nothing to see here). 

What to do? We planned to go to the ER, because active bleeding in the throat is not good. I’ve not been to medical school except through proximity, but “active bleeding in the throat is not good” was my expert medical opinion. As we got ready, Bess thought to call the Mayo ear, nose, and throat (ENT) department, because the likely outcome of the ER visit would be an ENT consult, in which an ENT resident comes down to the ER and does a “scope.” A “scope” means spraying some numbing medication into the nose and then sliding a tiny camera up there and then snaking it down the throat. If you’ve cleared a drain, the action is not dissimilar. It’s not a fun, comfortable process, but I’ve now had it done a bunch of times and it’s not the worst procedure either. 

Before we left for the ER, Bess got an ENT appointment with a PA at 11:00 a.m. Great: easier than the ER—cuts out the middleman. I sent a Mayo portal message to Dr. Hinni’s account, which is usually monitored by a nurse. Dr. Hinni is the surgeon who led both my surgeries; coincidentally, I’d seen him Monday for a routine follow-up. He’d looked around in my mouth with a little mirror and said I look great. It must be disappointing to be a doctor, doing all this great work, only to have the great work you’ve done up and die on you. Maybe it’s like carving pumpkins or ice sculptures, knowing that the work is doomed to transience. Anyway, the hoi polloi like yours truly use the Mayo portal, but Bess is among the exalted elect who work for Mayo, and on whom the Mayo light shines down always, so she sought her favorite backdoor: she checked Microsoft Teams, that blesséd communication tool of Mayo insiders, and saw that Dr. Hinni’s PA, Tony Mendez, was online, so she shot him a message, along with the photos showing what had come out of me. 

Tony replied within a few minutes saying we could come right in, but Bess didn’t see that message, so we went in for the 11:00 a.m. appointment. Fortunately, Tony was available then, which matters for continuity of care and speed of care, since he’s already familiar with me and my many maladies. We’d have a lot less catch-up with him than with someone new. 

Tony scoped me, as expected, and the scope didn’t show much; he didn’t even spot the fangs that I of course don’t have. He saw some granulation tissue in one or two spots, which indicates something healing or scabbing over. Granulation tissue is relatively good, Tony explained, because tumors don’t granulate over. Tumors just cause more problems, and it didn’t immediately appear like a tumor was pushing into my throat. It does not take advanced degrees to know that is good.

He pressed firmly on each of the tumors on either side of my neck without warning (what is it with medicals poking you without telling you first?) while the scope was in my throat, and he was relieved to see that the necrotic tumor tissue that’s been draining out of the left side of my neck since the events narrated in “What in the hole is this? A medical mystery story” wasn’t draining inward. One side of the throat showed some peculiar ridges that could be the result of a tumor pressing in, but that could also be from any number of other things, including a problematic hyoid bone. A hyoid bone horn could be poking in. That day I learned that not only rhinoceroses, Satan, and brass instrument sections have horns: the hyoid bone does too. 

Not finding active bleeding was good, but Tony was concerned that an artery could be leaking blood. The lingual artery ends prematurely and was cauterized as part of the massive May 25 surgery, so it was a prime candidate. In medicine there’s a term called a “sentinel bleed,” which basically means a relatively small bleed from a vessel that precedes a massive, very dangerous bleed from that same vessel. It’s like noticing a small leak in a submarine and going, “That leak is not likely to stay small.” It’s like hearing the floor creak in a horror movie moments before the jump shot of the monster bursting forth from the closet. It’s like all sorts of terrible metaphors—the sound of shattering glass, a strange flash of light, the sudden smelling of toast— that would make you say “huh, that’s strange” before everything collapses.

Anyhow, metaphors aside, sentinel bleeds can happen with aneurysms in particular: a little blood in the brain causes a headache, and that precedes the fatal aneurysm. If you ever suddenly feel “the worst headache of your life,” get you to an ER ASAP and tell the triage nurse “I’m feeling the worst headache of my life,” cause it might herald an aneurysm.

In my case, Tony wanted to check for bleeding with a contrast-enhanced CT scan, that would make the vessels light up and reveal any leaks or signs of a tumor eroding into the vessel. He didn’t think that such a bleed was likely, but it was possible, and fatal if it occurs. Catching it would allow emergency surgery to tie off or attempt to cauterize the vessel, or, more likely, to give interventional radiology a chance to perform an “embolization,” in which they use a catheter to seal off the vessel with a coil or some kind of plugging material (I am told that “spackle” is not the correct term). Even so, the surgery or embolization could fail because tissue behaves badly secondary to radiation and tumors. If I were bleeding and elected for surgery, I might still die, but I’d have a shot. Bess and I told Tony that on Monday, Nov. 20 (that is, today), I was supposed to get some CT scans anyway, so he threw the chest and abdomen CTs on too. Why get contrast injected twice in a ~five-day span?  

So Bess and I walked to scheduling, where a nice woman named Jenny mounted a spirited effort to get me a CT scan slot. Mayo is good at many things, but getting scans done expeditiously is often not one. Jenny wore bright blue contact lenses over her brown eyes, which gave her a kind of uncanny-valley-meets-mystical appearance, and it felt a little like she’d been hired direct from Arrakis to work the Mayo front desk. She sent me to have my creatinine—a measure of kidney function—drawn by the lab, since healthy creatine levels are a requirement for receiving the IV contrast I’d require for the scans.

The only available CT appointment was initially 5:10 p.m., but Bess worked the system some by intimating, vociferously but not inaccurately, that, if I needed emergency surgery, it would be best to find out during business hours. Jenny got the Mayo Scottsdale campus to slide me in. Score! We drove over. I wanted to stop on the way at J L Patisserie for snacks,*** but J L was barely yet distinctly too far out of the way. At Mayo Scottsdale I got into the CT area quickly, although the IV necessary to deliver contrast had me crying and whimpering from the pain of needle insertion. My veins are by now well scarred: they may be prominent, but they’re horribly damaged, like some political figures. Anyway, the IV did its job and I got scanned. 

The first paragraphs of this essay relay what the scans found, since that’s the most important thing and in almost all writing, you should start with the most important thing.  People are TERRIBLE at this. I remember this conversation between Tyler Cowen and Dave Barry on the subject: 

BARRY: There are certain fundamental things that businesspeople have trouble with [in their writing].

COWEN: What’s the main thing they get wrong from the business mentality?

BARRY: OK, the most consistent mistake . . . not mistake, but inefficiency of business writing — and it was very consistent — is the absolute refusal on the part of the writer to tell you right away what message he or she is trying to deliver. I used to say to them, “The most important thing you have to say should be in the first sentence.” And “Oh, no, you can’t. I’m an engineer. We did a 10-year study, this is way too complicated.”

And inevitably, they were wrong. Inevitably, if they really thought about it, they were able to, in one sentence, summarize why it was really important. But they refused to do that because the way they found out was by spending 10 years of study and all this data and everything, and that’s the way they wanted everyone to look at what they did. They wanted their supervisors to go plowing through all they had done to come to this brilliant conclusion that they had come to.

Today’s top takeaway, for example, is that the tumors in my body are mostly smaller, so I lead with it. The tumors-being-smaller thing is good from a longevity perspective and alleviates some immediate logistical challenges because I’ll continue petosemtamab for two additional months, barring the unexpected. Being ill admittedly means expecting the unexpected; I didn’t have “hacking up some blood from my throat” on my expectations list for last week. The good news about the CT scans is more important than the fact that we got the results of the CT scans while we were in the parking lot of a juice place called Kaleidoscope, picking up a cherry smoothie whose cherry pieces Bess thought looked a little too much like the blood I’d brought up that morning. She thought the observation a little gross, but interesting from a thematic perspective (ER doctors routinely compare foods to things they’ve seen at work, which does not always make them popular dinner guests). 

After Bess and I got home, Tony called us to say that he showed the CT scans to Dr. Hinni, and together they traced the arteries in the neck and concluded that there don’t appear to be any bleeds there, or any tumor eroding or compressing the vessels. Great news! The radiologist, Tony, and Hinni have all looked carefully at my insides, from the outside, and concluded that important parts of my insides are likely to stay in their proper channels.

So what happened? We’ll never know for sure. Some causes could include that 1. I’ve been hacking too hard in attempts to expel mucus, or 2. the petosemtamab is affecting the skin inside my throat as well as the skin on my body, or 3. granulation tissue (which can show up even months after surgery, particularly in people who have already been messed up by radiation). Whatever the cause or causes, if the bleeding doesn’t seriously recur, then the blood I hacked up somewhat random episode in an illness that’s been a relentless parade of boredom and pain, punctuated by terrifying and annoying episodes.

Instead of doing the writing Bess and I were supposed do on Wednesday, we spent a bunch of time in the hospital. To be sure, I don’t want to sound ungrateful for that, and not dying was and is good. Things went about as well and as fast as they could have, given the circumstances. We both got lucky, and the system worked. Tony was great! As he’s been since we met him. And yet we were still gone for like six hours, taking care of business—the business, that is, of healthcare. “The more things go wrong, the more things going wrong,” which went up last week, is highly congruent with the recent episode.

That night, to celebrate the good news from the scans Bess picked up some takeout from what used to be one of our favorite restaurants, FnB, and the food was…okay. The last bunch of times we’ve either been there (Bess) or gotten takeout from there (me), the food has felt a little phoned in. It’s never been bad, but we find ourselves looking at a dish of, say, shaved kohlrabi, cheddar cheese, lettuce, and horseradish, and we think: “Well shit, we can make that in a few minutes and for a lot less than $20.” The food used to be consistently magical, and in the last, I don’t know, six months, maybe more, it’s been less exciting. By now it’s hit that nexus of “less exciting” and “more expensive” that make us look elsewhere. Bess confirms that, although the months of disappointment with FnB correlate to my months without a tongue, the food quality has declined even when the dishes are eaten with physiologic structures intact. The Arizona challenge remains, however, in that there aren’t a lot of good or even interesting-looking restaurants, let alone really good ones, let alone great ones. I may have spent two months unable to eat via mouth, and now I can only do slurries, but I want to at least try for interesting slurries, while I can.

I have to fly to Houston on Nov. 27 to see MD Anderson on Nov. 28, and then fly home Nov. 29. Today we’re going to San Diego for a petosemtamab infusion, the week after, Houston, the week after that, San Diego again. Being sick is a full-time job—Wednesday’s adventure is thematically consistent with this—except one that you pay for instead of being paid. At least the CT scans indicate that I’ll get to spend more time with Bess, and with you, for which I’m grateful. 

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

* In radiologist-speak: “New areas of nodularity and patchy airspace disease in the lung bases.” It appears that the radiologist caught two new nodules: “New 6 mm nodule in the right lower lobe” and “New nodularity and patchy airspace disease in the posterior left lower lobe.” But if a bunch are also “stable or decreased from prior,” that’s pretty good.

** That the most-efficient way to send medical imaging is still via plastic disc is insane, but that insanity is not today’s topic and it will have to wait for another time. The whole “share medical records via the EHR system” thing still doesn’t work seamlessly, to put it lightly.  

*** Bess says that I am “like a Labrador retriever in human form.” This furthers her argument, I realize. My tail does wag at the prospect of one of their chocolate cookies.

When you’re robust and things go wrong, recovery happens quickly: the hamstring aches for a few days, then returns to functionality. The broken arm is an annoyance, but the cast comes off and it’s not hard to hit the gym and build back strength. The cold or flu might linger, but it dissipates. I used to be robust and, like most robust people, I unconsciously assumed robustness as the natural state of my world. Now I’m not, and the painful premature slide from robustness to fragility is foregrounded every day. After my initial Oct. 20, 2022 surgery, I recovered relatively fast; sure, I woke up with a piece of my tongue gone, but I could swallow watery smoothies the night of. I rapidly got up and walked unaided. Though the surgery aftermath and recovery were uncomfortable, I could perform the bodily functions necessary for discharge from the hospital—namely, peeing. So, I peed the night of, which got marked in my medical chart, and the day after the surgery I got to go home. I achieved independence fast.

Back then I had a lot of physical margin for illness: I lifted weights, I didn’t eat much sugar, I used a Levels Health glucose monitor (rice is much worse for glucose levels than I’d realized). The surgery could have been much harder and thus the subsequent recovery harder, but it wasn’t and my baseline level of health made me better prepared than if I’d ignored nutrition and motion. I had some social margin, too: I was in a relationship with my now-wife, Bess,* who helped tremendously: it’s hard to do life alone, and it’s harder still when sick.

Bess was there when the news came down that the tumor showed bad features, like “perineural invasion” (PNI) and “extension through the base of the mouth into the geniohyoid,” and I got assigned radiation therapy to the head and neck. During the roughest stretch I was taking 10 – 15mg of Oxycodone every three hours, on top of gabapentin,** Tylenol, and ibuprofen. Yet I’d prepped for radiation, too, as best I could: I resumed going to the gym as soon as I could, and I ate as much as I could get down in order to try gaining weight.

During an education session about the radiation process, Dr. Patel, the radiation oncologist, emphasized the need to conscientiously comply with radiation mitigation strategies and avoid, if possible, hospitalization for radiation side effects. He said something interesting—well, he’s an interesting person who says many interesting things, but this one stood out—the people who wind up hospitalized and struggling are usually the ones who are alone. No one is watching and helping, and they consequently don’t have the strength or ability to mitigate the potentially devastating radiation side-effects. Having stumblingly endured radiation with help, I see how and why someone without help wouldn’t be able to do all that needs to be done. Apparently, there are a lot more of those people than I’d naively thought. The articles and books about the increasingly loneliness and disconnection of Americans are manifested in the healthcare system.

During radiation I suffered from many maladies, but not loneliness or lack of aid. Bess, for example, made me a steady diet of Kodiak Cakes and smoothies. The Kodiak Cakes were the unanticipated, relatively high-protein staple of my diet. Usually I cook, but Bess ensured that I ate even when the thought of food made me feel a range from “ennui” to “dread.” Thanks to Bess and my family, I had not only the physical robustness, but some social and financial robustness, too.

When you’re fragile, one thing going wrong cascades into other things going wrong. That first cancer surgery wasn’t pleasant, and I wouldn’t recommend it to friends, but it was successful, in that Dr. Hinni, the ENT who performed the surgery, got clean margins and removed lymph nodes (none cancerous) from the left side of my neck. The radiation series left me with a literally stiff neck and other weaknesses, but, as I wrote in “Life, swallowing, tasting, and speaking after a total glossectomy (meaning: I have no tongue)” the damage leaned cosmetic more than structural. I tried to recover from the radiation, and I did well enough to teach an English class that began the first week of February, 2023.

In Antifragile: Things That Gain From Disorder, Nassim Taleb claims that “Some things benefit from shocks; they thrive and grow when exposed to volatility, randomness, disorder, and stressors and love adventure, risk, and uncertainty. Yet, in spite of the ubiquity of the phenomenon, there is no word for the exact opposite of fragile.” He’s right in that “Some things benefit from shocks” (emphasis added) but, if the human body benefits from the shock of having part of one’s tongue removed, and then radiation therapy, I’m not aware of it and haven’t experienced any benefit. Some stressors, like the squat and deadlift, are good for the body. Others, like tongue removal or chemotherapy, are not, though they’re better than cancer. Taleb says that “Complex systems are full of interdependencies—hard to detect—and nonlinear responses.” Cancer likely qualifies as the sort of thing that creates a nonlinear, negative response. Friends and acquaintances have expressed shock and worry that I’m the one who got hit with squamous cell carcinoma (SCC) of the tongue: I have no risk factors and a bunch of relatively healthy habits.

After the recurrence and the “salvage surgery” that left me tongue-less, I’ve become fragile. Immediately after the surgery, I couldn’t walk unaided, because a huge piece of muscle and tissue had been removed from my left thigh to create the “flap” of tissue that inertly replaced my tongue. A fall would likely have been fatal. The last essay I wrote, “What in the hole is this? A medical mystery story,” is essentially about the dangerous medical cascades I’m prone to. Someone poor experiences a financial shock as a disaster someone with more money can withstand or even barely notice; someone sick experiences even a minor medical problem as a disaster, because, after a certain critical mass of illness, no setback is actually minor:

As of October 20, I’ve undergone a year of medical harassment / treatment, though I’m unlikely to undergo another. I’ve been conditioned by experience to always expect a new problem. Perhaps the most recent is Augmentin causing a fungal infection in a place where one really does not want a fungal infection.

The preceding paragraph also helps explain why travel is no fun. Friends have asked if I want to do a dream vacation. I see where they’re coming from, but until recently I was relentlessly exhausted by surgery, chemotherapy, and infection. I’m doing somewhat better, but I still feel on the verge of catastrophe. Weight is part of it: I’ve lost around 40 lbs and worry about starvation. That is not a joke. Most of my calories are injected into my peg tube, and I “eat” from pouches of Liquid Hope. The TSA won’t let Liquid Hope pouches through airport security theater, so I have to check them in a bag. If I show up somewhere and my bag—containing the food I have to eat, the syringes I have to use to inject it, and so forth—doesn’t, that’s an immediate crisis. I can’t buy peg-tube food in a grocery store. If I don’t have, or lose, medications like antibiotics when I need them, that’s a crisis. I don’t know what the next potential crisis might be, but I want to avoid it. Acquiring Covid on an airplane or in an airport could result in a crisis.

Crisis, disaster: those are always lurking in my mind, sometimes consciously and sometimes unconsciously, and everything I do or, more often, don’t do is controlled and informed by the disaster worry. The number of things I can do shrinks, and the number I can’t grows. I mourn what I could do in the past and can’t now, though I seek to emphasize the positive aspects of the here and now. Fragility means feeling like my body is betraying me, every day. It’s looking in the mirror and seeing a half-dead ghoul looking back. It’s the cruelty of disfiguration. It’s the choking on food. It’s the full body rash and my skin cracking and peeling from the petosemtamab infusions, it’s the cuts on my thumbs and heels that won’t heal properly. It’s the fear of catching a cold, because I already have so many problems with mucus. It’s the social isolation, “social isolation” being another term for “social fragility,” because speaking is now so hard that casual chat isn’t casual and subsequently doesn’t happen. The words coming out of my mouth trip over each other like drunks incoherently trying and failing to get out of a car successfully.

The sick really inhabit their own—our own—world. Beyond being isolating, it’s the world of missed connections. I read the David Brooks book How to Know a Person: The Art of Seeing Others Deeply and Being Deeply Seen, and it describes the fragility of true, intimate connection and how you can miss a momentary something and inadvertently degrade the moment:

I realized that I have to work on my ability to spot the crucial conversational moments in real time. I have to learn how to ask the questions that will keep us in them, probing for understanding.

It’s easy to miss these moments in conversations with friends, and it’s almost impossible to force them. We can try to set up conditions for the crucial conversations, but truly having those conversations is unpredictable, like good ideas: good ideas sometimes arrive at the most unexpected moments, but the people who are actively seeking them out and trying to harvest them are more likely to find them. My ability to seize the promising conversational moments has been retarded, though not yet entirely eliminated. I’m still trying to have Brooks’ crucial conversations with friends, however much I sense the relentlessly missed connections. I say something that’s too garbled to be understood; my friend stops and asks for clarification; we never quite achieve the right rhythm. Brooks speaks of talking to a dinner partner who said that: “He’d be in the middle of an important meeting with someone and his mind was always going back to reconsider something that had already happened or leaping forward to think about something he had to do later in the day.” Too late, Brooks realizes:

That was an important confession! I should have stopped him to ask him how he had become aware that he had this weakness, had this flaw marred his relationships, how did he hope to address the problem?

The moment is lost to time. For me, fragility means so many of those moments are lost to time, or they never happen due to exhaustion, nausea, and the challenges of speaking at all. I try to compensate via writing, but the writing is still a compensation. Most people don’t like writing and can’t maintain relationships primarily through text. I have a few friends who are like me and can, but I recognize that that ability is rare and weird.

My life feels like it has, and I have, been reduced and reduced and reduced. One friend wrote to me that: “NO, SUFFERING DOES NOT MAKE YOU LESS HUMAN.” He’s probably right, and yet I waver in believing him. Suffering might be the human condition, the link that binds us, but in limiting the way I connect with other humans, it somehow makes me feel both far from everyone else and also further from myself. Maybe my friend is right and being human means being isolated by the unique experience of our own personal decline and mortality. We ultimately face it alone, together.

Still, it’d be nice to feel like the “together” part isn’t being degraded by my deficits. You miss something in the conversation, and that miss degrades the connection a little. The parallel to the body’s fragility is probably obvious, but, to make it explicit, fragility means that missing something might initiate a crisis that ruins your body altogether. It might mean dying. It means losing days and days to medical treatment. A single ER visit for a dislodged PEG tube, the replacement of which takes two minutes now that the tract is fully formed, still somehow eats up at least five hours of a day. That’s five hours I don’t have to spare, but at least the PEG tube replacement is a simple repair (I know: I sound like a bike in the shop). At what point is something beyond repair? At what point am I reaching the point of no return? Do you always know the tipping point? I don’t think I do, not now, but the final tipping point is close, and at some unknown, lurking point soon I’ll fall forever.

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

* She has her own Substack, too, per the link.

** Gabapentin dampens nerve response and consequently has the unfortunate side effect of dampening sexual ability and response to near non-existent, so it’s testament to the discomfort of radiation that I continued to take every dose on a fixed schedule.

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.

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

* 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.