No sane person wants their tongue removed, but having it out and not being able to swallow has particularly awful resonances for me: I’ve been into food and cooking since I was a teenager, and “going out to dinner” was the most common form of going out for Bess and me. “Having friends over for dinner” was our most common form of socializing. I chronically experimented with new food and gadgets in the kitchen. What can I make with fish sauce? Is the sous vide machine worth it? Can an air fryer replace the oven for many dishes? Will the capers in cauliflower piccata alienate our guests?
After the surgery, the questions changed. Would I meaningfully survive at all? In that first week after the surgery, I felt I should be dead. What would happen to me? Would any semblance of normal life be achievable?
I like to eat—or, rather, liked to eat—and, at current levels of technology, everyone needs food. So why not combine what I like to do, what everyone needs to do, and what I can afford to do? “Come over for dinner” is low stakes: eat for an hour and discuss the projects we’re working on, the things we’ve learned lately, or the ideas we’ve been having. Then go somewhere else, or do something else, or finish the work.
Most people experience diminishing marginal returns from hanging out: the first hour might be great, the second okay, and the third drags. How many times have you wanted to leave some event that was good for a while but ceased being so, yet you felt socially obligated to? For this reason, a time constraint, true or not, improves a lot of meetings: “Let’s go for that walk at 3:00, but I have to run by 4:00.” A lot of us aren’t that interesting, or don’t vibe as well with one another as we could or should, or aren’t working on projects that are fun to share.
Things are past the optimal point when phones come out and videos or whatever start being passed back and forth. For some reason, a lot of people want to fill the time they have with hanging out, but my ideal is different: we should hang out for the right amount of time—which is, I think, usually the length of a long meal—and that’s typically not all day, even if theoretically all day is available. Because the ice cream is there doesn’t mean all of it should be eaten; because the day is there doesn’t mean the whole thing should be spent.[1]
That a lot of us aren’t maximally interesting is a weakness mostly ignored in David Brooks’ book How to Know a Person: The Art of Seeing Others Deeply and Being Deeply Seen, as I describe in “The quality of your life is the quality of the people you get to know.” Yet Brooks says some people are better at eliciting the best in others, and that we can consciously improve our ability to elicit the best. I want to think I am one of those people, and that the act of feeding people interesting things helps to bring out the best in them, but, if I’m being honest or realistic, I’m likely not.
Since finding out that the petosemtamab / MCLA-158 clinical trial drug I’m receiving has been shrinking my tumors, I’ve been considering a question that, as of July 21, I’d banished from my mind: What if things go right? Plus: What if I unexpectedly survive for an extended period of time? “Extended” as in, conceivably years (plural). Although it’s improbable that I’ll get what’s called in the clinical-trial business “complete response,” or total elimination, published phase 1 trial data shows that petosemtamab is effective for about six months for the median person suffering head and neck cancer.
After petosemtamab stops being effective, however, I’ll be able to switch to another clinical trial drug, with a different mechanism of action, and, as I wrote in “Tentative, fluttering optimism: The R & D ferment in head and neck cancer treatment,” there are at least three and probably more than half a dozen treatments that’ve shown some success. In July, I didn’t realize that there were any apart from Keytruda, which I’d already failed, and my primary oncologist then either didn’t know anything about the clinical-trial successes in his field (which is bad) or didn’t tell me about them (which might be worse).
In July, I assumed that I’d live weeks to months, and that short lifespan projection wasn’t unreasonable: the squamous cell carcinoma that started in my tongue has been relentlessly fast and aggressive. Extensive radiation therapy barely slowed it, and throughout May the tumor recurred so rapidly and grew so unexpectedly that, instead of losing half my tongue (as was anticipated), I lost all of it. The May 25 salvage surgery, combined with Keytruda, could have been curative, but, well, we know how that turned out: the cancer was back and bigger than ever in under two months. There were four tumors in my neck and multiple “nodules” presumed to be cancer in my lungs. Pessimism was warranted: Chemo is only palliative for what I have, and Keytruda only works for 20 – 30% of patients, me not among them.
Bess responded to the ill news by spending almost every waking hour for six weeks after my metastatic recurrence learning about the clinical trial system; the result is her epic tale and guide, “Please be dying, but not too quickly: A three-part, very deep dive into the insanity that is the ‘modern’ clinical trial system.” She turned out to be more helpful, and infinitely more interested, than some of the head and neck oncologists we talked to, some of whom had never heard of petosemtamab or BCA-101, two of the most promising HNSCC treatments. While Bess mastered the clinical trial system, I got two rounds of chemotherapy, which, on top of a continuing recovery from the brutal surgery, made me feel barely alive. Despite making me feel abysmal, those chemo rounds bought some time and, thanks to Bess’s efforts, I enrolled in the petosemtamab trial at UCSD.
Moreover, as mentioned above, CT scans after two months of petosemtamab treatment show that it’s effective: the tumors in my neck and lungs are now, on average, about 12.5% smaller than they were on Sept. 5. I’m still far from doing great, but I’m a little better than I was through the most intense parts of the surgery recovery, then the chemo, and then an indolent infection in a necrotic lymph node on the right side of my neck. I’m better able to take care of myself and Bess is planning to go back to work. The cancer is almost certainly still going to kill me, but we have a legitimate plan for keeping it at bay for as long as possible. How long? I don’t know. Not knowing makes it tough to figure out what to do with the life I have left. When I thought I was going to be gone in weeks to months, I focused on saying goodbye.*
Now what? Focus on saying hello, which is I guess the antonym of saying goodbye? How much should I focus on working for money? If I’m only going to live for six months, the answer is “Not much.” “Six years” yields a different priority and behavior set. The questions are unanswerable, though I have to answer them through my choices, despite them not being deterministic or computable. In the last five months, mere survival has been the desperate goal, and in pursuing that goal I’ve been thankful for and blessed in the generosity of friends, readers, and strangers in contributing to the Go Fund Me that my brother set up, which has let Bess and me focus on physical and medical challenges more than financial ones. I’ve been terribly sick, and lucky for the support, particularly in light of the mystery five-figure bills that are peculiarly not covered by United Healthcare (a topic to be further explored in the future). Because of the Go Fund Me, I’ve not been forced into the brutal, impossible decisions many cancer patients face, and for that I’m grateful. Even so, getting and staying sick for long periods of time is hard; I’m highly pro-vaccine for lots of reasons, the main one being that being sick sucks and being healthy is better. Granted, being sick is better than dying, most of the time.
In some sense everyone’s future is unknowable; lots of friends correctly point out that anyone can die at any time. While that’s obviously true, most of us expect, most of the time, to live into, say, our 70s—and actuarial tables agree. Call it 75 meaningful years. Some people get more, but by 75 a person has to wonder, at current levels of medical technology, how much is left and what the quality of what’s left might be. People in their 30s, unless they have a terminal disease, anticipate and act with decades in mind; most of us are raising families or trying to have kids, building assets, and developing careers. Memento mori, yes, yes, and the knowledge that life is fleeting, should drive us to do things that are meaningful and eschew common bullshit like bad TV or short-form video or petty feuds—all the stuff that life’s too short for. Overall, though, we plan to live more than we plan to die.
[Y]ou are the inverse of what most of us wrestle with day to day. There is a small probability that we could die soon, but we probably won’t. So we have to plan for the future practically and figure out how to live accordingly. Yours is the opposite. You are staring at the likelihood of death but you could live. You have to prepare and plan accordingly, make sense of that philosophically. It must be very strange…though I guess when I think about it like this, it’s pretty strange for all of us.
If things go right, things will also have to change. I won’t be able to pitch clients the way I did back when I had a tongue, for example—I’m hard to understand on the phone. I’m less energetic, and I have hours each day of food and medical care that can’t be ignored. Bess and I have been trying to have a kid; what’s that look like? When I saw the dreaded news in July—”likely multifocal disease recurrence along the flap margins and posterior sternocleidomastoid” and “there are multiple new enhancing masses concerning for multiple areas of disease recurrence predominantly along the inferior margin of the flap, with an additional 1.9 cm necrotic mass between the right internal jugular vein and sternocleidomastoid muscle”—Bess was talking on her phone to a realtor about buying a housing unit.
Everyone faces known unknowns and unknown unknowns, but we plan and execute our lives as best we can, knowing that we’ll likely get our future selves wrong (a topic Bess addresses in “Remembering things that haven’t happened yet: How will I know what I need to hear in a future I can’t anticipate? Who will I be, and what will she want?”). I have a larger number of unknowns, though, relative to the average person my age. I’ve adjusted my life in other ways, too; I’ve not been seeking out new friendships in everyday life to the extent I used to. Part of that is because being hard to understand makes cultivating casual friendships hard. And, if I’m going to die in a couple months, I want to focus exclusively on the people I know and on saying goodbye. If not, then I don’t want to lead a life of loneliness, as so many people do now, often, I think, inadvertently. There’s never a deliberate decision to pursue isolation, just a series of smaller choices that wind up with radical disconnection and the unhappiness that brings. Drift and complacency rule so much of human life, yet no one gets to the end and says, “I wish I’d drifted more. I wish I’d been more complacent.” Hardly anyone regrets energetically pursuing goals, ideas, knowledge, or business, but drift, inertia, complacency—they’re bad. We may not get our future selves right, but we can try to reduce the regrets of our future self.
If things go right, much will change, not only with making new friends and associates, but with maintaining old ones. It’s been hard to keep up, verbally, with friends. Most days I don’t have the energy to go out and do normal things with people. Friendships become attenuated over time as the casual touches—phone calls, coffees, adventures, whatever—slide away. So much of my old life feels like it’s sloughing off. I’ve met new friends through writing online, and some old friends have resurfaced, so the writing has produced some benefits I didn’t anticipate.
Many previous hobbies and interests probably won’t work anymore. Maybe some of my previous hobbies and interests were rooted in young adulthood, and the true adult interests of mature adulthood are coming in but aren’t quite there yet (a lot of people who live in New York can’t or think they can’t afford kids, giving them a Peter Pan quality). Probably I will never do MDMA again, despite its virtues for relationships. Other psychedelics are possible. Probably I will ride electric bikes again. Teaching? Probably not. I miss teaching, but doing it the conventional, legacy way through existing colleges and universities has so little money in it that, despite liking to teach, I’ve been waffling for years about whether it’s worthwhile. And now I’d have to struggle to be understood.
A lot of spontaneous go-places-and-do-things adventures are out: I’m too fragile and too encumbered by the gear necessary to support life. Not everyone agrees. When I said to Bess that something like, say, a week in Italy seems impossible, she surprised me by quickly rattling off a plan to rent a room above a bookshop somewhere in Tuscany and manage PEG tube feedings (I’m supposed to get a “button” PEG tube installed soon, which will sit flush against my stomach and be less of a hassle)—plus, what kind of European conversion plug the VitaMix would require and how to fit in a weekend in Rome, as if she’d been planning a potential trip for the last month, which, who knows, maybe she has. She’s a surprising, energetic woman. A week in Italy still sounds like excessive struggle, but her detailed thoughts demonstrated that having a wife who likes to travel and troubleshoot is useful for more than clinical trials. She’s really telling me, I think, that if I somehow survive this, however improbable survival is, if my life is somehow one day not utterly dominated by treatment needs, we’re not merely going to survive; we’re going to thrive.
The old ways are dead, but have the new ones been born? I’m not sure, but I’m trying to find out.
* For me, although petosemtamab is extremely unlikely to be curative, after it perhaps there will be nt219, which, in a phase 1 study, found that two of four head and neck squamous cell carcinoma (HNSCC) patients saw “partial response.” And after that something else, like Seagen’s SGN-PDL1V (Pfizer just bought Seagen for $43 billion, implying a lot of belief in Seagen’s drug pipeline). Or maybe petosemtamab will turn me into a Keytruda responder.
“There is clearly a universal eligibility to be rational and literate. Sometimes snobbery is forced upon you. So let’s have a period of exaggerated respect for reason; and let’s look down on people who use language without respecting it. Liars and hypocrites and demagogues, of course, but also their fellow travelers in verbal cynicism, inertia, and sloth.”
—Martin Amis, The Rub of Time, a beautiful sentiment, especially the idea of rationality and literacy being universally available but not, as we can see, universally adopted. I want to start citing that one when I hear people denigrate standards. To join the clerisy you need no special degrees and there are no gatekeepers; you only need books, and time, and your mind.
“A novelist talking about the art of the novel is not a professor giving a discourse from his podium. Imagine him rather as a painter welcoming you into his studio, where you are surrounded by his canvases staring at you from where they lean against the walls. He will talk about himself, but even more about other people, about novels of theirs that he loves and that have a secret presence in his own work.”
“When we feel like victims, all our actions and beliefs are legitimized, however questionable they may be. Our opponents or simply our neighbors, stop sharing common ground with us and become our enemies. We stop being aggressors and become defenders. The envy, greed, or resentment that motivates us becomes sanctified, because we tell ourselves we’re acting in self defense. . . . The first step for believing passionately is fear. Fear of losing our identity, our life, our status, or our beliefs.”
That’s a speech given by Andreas Corelli in The Angel’s Game (a great novel, and its English translation came out in 2009).
Oh, and he’s the devil. So we probably ought to be wary of what he says.
Reading such passages is a reminder of why politics in the post-literacy era may not be going so well. It would be hard for a high-literacy person—like most of the “founding fathers” were—to have made some of the recent political choices that voters have made.
“I do not promise happiness, and I don’t know what it is. You New World people are, what is the word, hipped on the idea of happiness, as if it were a constant and measurable thing, and settled and excused everything. If it is anything at all it is a by-product of other conditions of life, and some people whose lives do not appear to be at all enviable, or indeed admirable, are happy. Forget your happiness.”
“Tolstoy had also been in his sixties when he learned how to ride a bicycle. He took his first lesson exactly one month after the death of his and Sonya’s beloved youngest son. Both the bicycle and an introductory lesson were a gift from the Moscow Society of Velocipede-Lovers. One can only guess how Sonya felt, in her mourning, to see her husband teetering along the garden paths. ‘Tolstoy has learned to ride a bicycle,’ Chertkov noted at that time. ‘Is this not inconsistent with Christian ideals?'”
—Elif Batuman, The Possessed, and I can’t help but notice the way many transportation options take on a moral dimension in the eyes of many commentators.
“But if art… is a harmony parallel to nature, as I’ve said, then the exploration of nature should be no less exciting and no less spiritually rewarding than the function of art. I mean, it’s the same field. When one’s bliss is actually science… it has to be. I remember that when I was in prep school, biology was the thing that grabbed me, and now I think of mythology as a function of biology, a statement of the impulse system and the organs. Not something that’s made up in the head. What’s made up in the head is the fiction; what comes out of [the heart] is a myth.”
The Story's Story 