I’m entering hospice. It’s time, and realistically past time. The squamous cell carcinoma tumors are growing, and the two doses of spot radiation I got on June 10 and 12 have utterly destroyed whatever quality of life I had. This weekend, a nurse came by and did some planning with Bess and me. Our extensive efforts to find and start another clinical trial have turned out to be futile, and I’ve withdrawn from the next-best potential clinical trial, BGB-A3055 in Dallas, at NEXT Oncology, because there’s no feasible way for me to do it (the people at NEXT, however, are and have been amazing: if you’re looking at clinical trials or live in Dallas, schedule a consult). HonorHealth in Scottsdale, where I live, has a TScan slot, but my physical condition remains terrible for essentially the reasons I’ve written about so extensively that there’s no need to belabor them. My days and nights are filled with unrelenting coughing, hacking, and pain. My whole jaw area is numb, likely from tumor growth. I wonder how much (or many?) of the headache I’m experiencing actually come from tumors, rather than coughing and other problems.
Why hospice? Bess wants the support, after I’m done. There are rules and bureaucracy even in death, and although she admits to being bad at asking for help, she feels overwhelmed now, and certainly will be later. Her bandwidth, she says, is only for me. The details about what comes after are too much, and too distracting.
I’ll keep reading messages until close to the end, though I may not have the strength or presence of mind to reply. I exist in a hazy, druggy fog. I’ve heard Tyler Cowen say in podcasts that he finds the fascination with people’s last words to be overblown, because at the end of life people are rarely at their cognitive peaks and often forget the constraints and desires that drove much of their lives (I’m paraphrasing and have probably gotten some nuance incorrect).
One virtue of a prolonged end is that I feel like I’ve said everything I have to say. I don’ t know that I have a favorite, but I’m fond of “I know what happens to me after I die, but what about those left behind?” Same with “How do we evaluate our lives, at the end? What counts, what matters?” I’m tempted to keep citing others, but if you scroll down into the archives you will find them. I meant to turn these essays into a memoir, but that is a project never to be completed by me. Bess assures me that she’s going to complete the project and do her best to get it published. We’ve created so much together in the process of building our life, and Bess says that doesn’t need to stop just because I’m not physically here, and that putting both our baby and our book into the world gives her immediate future the purpose that she’ll badly need.
Though having my life cut short by cancer is horrible, I’ve still in many ways been lucky. Most people never find the person who completes them, I think, and I have. I’ve been helped so much. Numerous oncologists have gone above and beyond. Many people, friends and strangers, have asked if there is anything they can do to help. The #1 thing is to support Bess and our soon-to-be-born daughter, Athena, whatever “support” may mean—the most obvious way is the Go Fund Me, as any remaining funds will go to Athena. I wish she could grow up with her father, but that is not an option. Being a single mom is hard;[1] growing up without a parent is hard; I cannot see what Athena’s future holds, except that I think and hope it will be bright, even though I will not be in it, save for the ways in which friends and family promise to keep me alive for her.
If you want to donate to research, I don’t know the absolute best place, but one good-seeming choice is the Arc Institute: “Arc researchers pursue both curiosity-driven exploration and goal-oriented research. The institute will initially focus on complex diseases, including neurodegeneration, cancer, and immune dysfunction.” They don’t have a turn-key donation page up yet, however, so send them an email and ask: “Why not?” I also got a lot of care under Dr. Assuntina Sacco at UCSD’s Moores Cancer Center, which does have a turn-key donation page. Let’s make the future better in every way than the past. Donations can be made in memory of someone who has passed.
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.
One friend wrote to me: “You did good—when the time comes, I hope that brings you additional peace.” Many of us don’t get what I’ve had: the opportunity to live a full, generative life with people who I love and who love me back. Yet I was able to have all of it, for a time.
[1] Though if anyone can do it, and find a way to do it successfully, it will be Bess.
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.
Five days ago I wrote about two simultaneous crises: one from swallowing and breathing poorly, and the second from PDL1V no longer holding back the tumors. Despite those beautiful scans in May showing extensive tumor-size reduction, the most recent scans show “Continued neoplastic disease progression throughout the neck as described. Of note tumor results in significant narrowing of the supraglottic airway.”
Sounds bad, is bad.
The installation of a new PEG tube means I can inject food without having to worry so much about how poorly I swallow. The new PEG tube feels like defeat in many ways, but my weight is hovering around 125 lbs and no longer falling hard. I also wound up staying inpatient after the procedures far longer than I should have, which cost weight and muscle mass. I’ve also been ravaged by saliva and mucus production again, which are almost as crazy-making as they were last summer. Still, I’m better able to swallow now than I was then, and the PEG tube means I’m less likely to starve death in the short term.
Secondarily, I wasn’t sure whether I’d have the strength to start a new clinical trial outside the Phoenix area. One challenge Bess I have faced since starting to pursue clinical trials, though, is that Arizona is pretty much a dead zone for the better head and neck cancer clinical trials. There are some at HonorHealth Research in Scottsdale (and the people who work there have, like almost everyone in clinical trials we’ve encountered, been helpful), but their most promising trials were “A Basket Study of Customized Autologous TCR-T Cell Therapies” from a company called TScan and “WTX-330” from Werewolf Therapeutics—and neither have slots available. The TScan trial may work, but, to paraphrase one oncologist we talked to, “We’ve been trying to get customized T-Cell therapies to work in solid tumors for a long time and keep failing.” Eventually someone is likely to succeed, but is this the moment, in a field littered with past failures?
As of right now (and highly subject to change), there’s a slot for Beigene’s BGB-A3055 in Dallas, Texas, and multiple sources report seeing some success with BGB-A3055 in head and neck cancer patients. Given how resistant head and neck cancers are, even “some success” is uncommon and attractive. Even a few days ago, I didn’t think I’d have the strength to fly for a new treatment, but dosing would start in early August, and by then I hope to be physically capable.
In early April, before starting PDL1V treatment, I was teetering on the edge of terminating treatment and exiting. Despite how rough early treatment turned out to be, continuing was the right decision. Once foreclosed, treatment options will not readily open again, and my tumors are so aggressive that “too late for real treatment” will become reality rapidly. If the exhaustion becomes too great, exit is always available, in a drawer, quietly lying in a pill bottle.
The story for now goes on; things have stabilized some, for now. Eating and sleeping might improve. If the mucus improves, I’ll probably be able to breathe and thus sleep more easily. Being able to think and write again would be nice.
I’ve been silent because I’ve been so very sick: swallowing has gotten much harder, and aspiration of food or liquid much more common, to the point that on July 1 I got a new PEG tube put in. Given how much removing the previous tube felt like a triumph, the new installation, although it’s keeping me alive, hurts. Literally and figuratively. Other physical problems I might write more about later are bedeviling me too—to the point that I wonder how much time I have left.
Being physically sick is one crisis; the second is that recent scans show that Seagen’s PDL1V is not holding back the tumors any more. I have to either switch trials, which I’m not sure I have the energy to do, or accept the end. Bess and I are working on a possible trial switch. But I’m swamped by headaches and fatigue. I don’t wake up properly. Foggy-headedness never abates. It may be that I’ve written my last essay (Bess saw this over my shoulder and she says she thinks I’ve not, but she’s an optimist about my longevity and writing abilities). I finished “Uncomfortable truth: How close is ‘positivity culture’ to delusion and denial?” a month ago. I meant to turn the last year’s writing into a memoir, like I’ve meant to do many other things, but cancer treatment is a more-than-full-time job, and now physical problems are knocking off a bunch of IQ points. I don’t know how many watts the brain typically consumes, but I feel like I need more, and the energetic processes that normally sustain and propel me are dysregulated.
Another recovery for a period of time is possible. If I don’t get there, thanks for reading. I still don’t know how to say goodbye, except by example.
“Positivity culture” is tricky to define but easy to feel, especially for someone like me, whose fatal cancer diagnosis elicits many responses rooted in the desire to evade the discomfort of imminent mortality or to seek false control because true control is out of reach. I notice positivity culture in responses from friends, family, strangers, and strangers on the Internet who say “look at the bright side” or “other people have it worse” or “you are lucky in some ways.” It’s the people who say I should stifle or cut off “negativity.” Though those people are not wholly wrong, they’re also missing a lot.
Positivity culture is adjacent to therapy culture, which I’m also ambivalent about: therapy is useful to some people in some circumstances, but for many it’s become a crutch and, often, a form of narcissistic dysfunction that denies true obligation to other people, as therapy itself becomes a replacement for authentic relationships and family. Real friendships and relationships aren’t about what happens when things are happy and convenient; they’re about what happens during difficulty, strife, and inconvenience. Who are you when things get hard? “Plenty of People Could Quit Therapy Right Now: Except in rare cases, treatment shouldn’t last forever” says:
There’s reason to believe that talk therapy in the absence of acute symptoms may sometimes cause harm. Excessive self-focus—easily facilitated in a setting in which you’re literally paying to talk about your feelings—can increase your anxiety, especially when it substitutes for tangible actions.
Therapy can promote self-absorbed navel-gazing. It’s like people who read too much and do too little: there’s an optimal amount of reading, which is less than I did in my teens or twenties. Too little, and a person is ignorant and not adequately benefiting from the learning of others. Too much, and a person is inert, without a perspective and drive of his own, too mired in the words of others. Some positive encouragement is good, particularly when depression leads to inaction and further problems. Too much is denial. Balance can be hard, but I see a default to excess, false cheerfulness.
“Why Positivity Culture is A Problem” is stashed behind a paywall now, but its author identifies cultural tendencies similar to those I’ve noticed. Another, congruent view is articulated in “The Opposite of Toxic Positivity: ‘Tragic optimism’ is the search for meaning during the inevitable tragedies of human existence, and is better for us than avoiding darkness and trying to ‘stay positive.’” “Tragic optimism” seems to me close to a stoic attitude, which admits sadness into life without being dominated by sadness. Look, I like optimism. Being around optimists is often more fun than being around dour pessimists. I just don’t want optimism to bleed into folly or inanity. The lines are blurry.
Gratitude is good. Having some perspective is good, even though I’m not sure what “having perspective” means. From a sufficiently cosmic perspective, our lives can look kind of pointless and meaningless, which seems bad, and maybe it’s better to imbue life with a meaning that doesn’t intrinsically exist. Maybe the optimal amount of perspective is as tricky a line as the right amount and kind of positivity.
I recently read “The Optimists Ended up in Auschwitz.” As you can infer from the title, the people who looked on the bright side didn’t flee Germany in the 1930s, and the people who were less convinced of the goodness of the mob ran, survived, and passed on their genes. Optimism is often but not always warranted, and pessimism exists because bad things do in fact happen, and, if we ignore them, we can die.
Too much catastrophizing seems just as bad as putting a happy spin on everything. If you always, then you stand still as the problem runs over you. When I first had pain on my tongue, I thought I’d bitten it. Bess identified nothing abnormal on the tongue’s surface, and so it seemed reasonable to wait and see if it improved instead of giving into hypochondria and rushing to the hospital like the patients Bess sees in the ER every time they feel a small twitch or twinge. The pain continued, and I saw a strange patch of skin on my tongue, and that stimulated me to act (albeit too slowly). During my most recent infusion of PDL1V, I talked to a guy who said he noticed pimple-size mass erupt on his hip, and over weeks it grew to the size of a saucer. His response to that and other symptoms was apparently to see a chiropractor and acupuncturist. I found his story baffling, though I know from listening to doctors’ stories that denial is powerful.[1]
When someone pitches positivity to me, I know there’s a kind of self-interest lurking in the pitch.[2] Most of us prefer to hang out with someone who’s upbeat to someone who is dour. Yet negative people are often funnier—better able to see life’s absurdities, which is to say human absurdity. I’ve gotten a lot of positive feedback on the humor in my cancer writing, and that humor germinates, I think, in my cantankerous side. It’s not that I actively try to cultivate cantankerousness—I’m no Larry David[3]—but I have to notice the negative, often absurdist facets of the healthcare system. At the same time, emotional honesty compels me to speak, maybe too voluminously, about the pain of premature death for those left behind. That pain just sucks. There’s no compensating wisdom. Occasionally, the more things suck, the better fodder they are for dark humor. That’s sometimes life. Bess reassures me that, when I think some of the things coming out of my mouth—or usually, keyboard— are “too dark,” I should just ask her to repeat some of what emergency healthcare workers say on a near-daily basis and I’ll be in excellent company.
In the U.S., we’re bad at dealing with things that just suck. Pain and adversity often teach nothing except how to access the angry, petty aspects of our natures. A friend recommended It’sOK That You’re Not OK: Meeting Grief and Loss in a Culture That Doesn’t Understand by Megan Devine; the book is useful, though it should really be a 5,000- or 10,000-word article.[4] It starts: “The way we deal with grief in our culture is broken.” How so? Devine says: “Platitudes and advice, even when said with good intentions, came across as dismissive, reducing such great pain to greeting card one-liners.” The intentions are good, but they misfire because “Our culture sees grief as a kind of malady: a terrifying, messy emotion that needs to be cleaned up and put behind us as soon as possible.” Sometimes life is terrifying and messy—themes Bess often describes in her work as an ER doc[5]— and Devine argues that grief often can’t be assuaged, except perhaps by time; although “most people approach grief as a problem to be solved,” grief is often not solvable at all, let alone in the short term. The perspective that grief, an inevitable part of the human experience for everyone except sociopaths, is a “problem” is itself a large part of the problem. Get a fundamental cultural supposition wrong and everything that follows is going to feel wrong.
Instead, Devine says grief is deeply felt, and often continues to be felt for longer than it “should be” (however long that is), and often the best thing for friends and family to do is nothing but sit and be present. I guess they can stand and be present, too. Most of us are uncomfortable and impatient with grief, so the advice to buck up, move past it, stay positive, etc., is really about making the person speaking feel better—not the griever. According to Devine, “Even our clinicians are trained to see grief as a disorder rather than a natural response to deep loss.” The commonplaces people say are detrimental, not helpful, in Devine’s model: “Platitudes and cheerleading solve nothing. In fact, this kind of support only makes you feel like no one in the world understands.” Is it true support? When friends and family inadvertently reach for clichés, the effect is the opposite.
Sometimes things happen for no discernible reason. Sometimes things happen and there is nothing to be learned from them. I for one think I’ve learned nothing from having cancer or losing my tongue, apart from the obvious, like “both suck.” Neither has made me stronger, better, more empathetic, or anything else positive. I’m not a better person. I don’t appreciate life more. People have told me my writing about my experience is helping other people, which is good, but writing about my illness has taught me that I’d prefer to be writing about something else in order to help people. It’s all bad, no good. I’d prefer not to have whatever wisdom pain might impart. Devine says: “As a culture, we don’t want to hear that there are things that can’t be fixed. As a culture, we don’t want to hear that there is some pain that never gets redeemed.” Instead, we want people to be positive and look on the bright side, even when both are lies.
Devine says that “Talking with people in new grief is tricky. During the first year, it’s so tempting to say that things get better.” There’s sometimes some truth to this: things are better for me right, now, today, than they were in June to August 2023. But they’re forever going to be worse than they were before cancer. To claim otherwise is not to put a positive spin on things; it’s to be willfully delusional. Positivity easily shades into delusion. “There are some events that happen in life that cause people to cross a threshold that forever changes them, whether they seek out their transformation or not.” I like that Devine is willing to imply that transformation can be bad. Sometimes there isn’t compensation for suffering. Sometimes suffering is, tautologically, just suffering. Not everything is meaningful and trying to impose meaning on it—or trying to impose meaning on it for the person experiencing it, so that you can feel that, should the same happen to you, it would be meaningful and not just arbitrary and terrifying—can backfire.
Being sad or unhappy or similar is telling us something. Sometimes it’s telling us to change. Sometimes it’s telling us something else, I think. Sometimes the feeling is just wrong, as is our potentially myopic interpretation of a situation, and, when a feeling is wrong, that’s when positivity culture may help. But negativity isn’t always wrong or pathological, and improvements come from realizing something is not going right and then fixing it. Or recognizing that something can’t be fixed, and the time is now to sit with the unhappiness.
To reiterate, I’m not against positivity and, like most people, I’d prefer most of the time to be around positive people than negative ones. But I also prefer to be around truthful, accurate people more than the delusionally optimistic, and though I can’t firmly mark the line between them, I know it when I see it. I appreciate what the friends who tell me to excise the negative are saying, even when I don’t follow their suggestions. Sliding into darkness and then the void is easy. Many aspects of my life do in fact suck, particularly compared to my life before the cancer diagnosis. Perhaps paradoxically, part of what’s allowed me to keep going is to acknowledge and be honest about what is going wrong, while trying to focus on the things that remain that are going right: mostly my relationships with other people, Bess, and still being able to write and contribute. Seeing that there are things to live for doesn’t negate or cushion the blows from the things that make living awful and hard, but neither do the things that have made me consider auto-termination negate the things that are still good.
The worst parts of the positivity people are the ones who reject sickness, setback, and ailment altogether—the “fair-weather friends” of cliché. The people who are “friends” with you, but when something slightly inconvenient comes along, they don’t want to hear about it—they’re obviously not friends, not in any significant sense of the word.
Sitting with someone who is ill, talking about it frankly, and the new challenges and fears it creates, puts the sitter in a position of closeness with the ill person, and therefore closeness with that person’s illness or loss. “If it’s happening to this guy, it could happen to me,” those clinging to the security blanket of positivity culture seem to be thinking. But, even for those who aren’t made uncomfortable by the thought of their own fragility, listening to someone’s personal experience with illness establishes a kind and depth of intimacy most people just aren’t really interested in. We’re a culture of surface, not depth. We more frequently say, “Hey, how’re you doing?” to people while we’re actively in transit, unable and unwilling to stop and hear a real answer. “I’m fine,” is rarely the truth, but it’s easy to imagine the discomfort we’d cause by answering, “My marriage is on the rocks and I’m worried about my last performance review, I could really use a friend to talk with over coffee.” We know the person asking doesn’t really want to know. I’m fond of saying in response to “How’re you doing?” that “I’m dying, which is painful and quite bad. How are you?”[6] Positivity culture is often a canned response to deflect and discourage real conversation. It’s a cutoff in the guise of the curative powers of pretend. It’s faux-connection. It’s bullshit. And our conversations are already infused with too much bullshit. I’ve already imposed a moratorium on banalities. Bullshit might be considered banalities’ equally useless relational first cousin.
Everything is not fine, not all the time. Not for me. Not for you. Though the gradations of “not fine” vary, shutting our eyes against the inevitable instead of finding a way to weave it into our lives, use it to forge connections with other equally fragile human beings, and use that knowledge to generate connection, is shutting our eyes against our own humanity. Sometimes a seemingly sunnier, happier perspective is an alienating, temporarily comforting lie.
The Buddhists have a meditation on death called “Maranasati.” You lie there for a while and dwell on the fact that, barring technological innovation like the Singularity, you’re going to bite it one day. You stop deluding yourself that you’re not a part of the human condition. Like many worthwhile things, Maranasati isn’t meant to be comfortable, even if you pay $30 to be led through the meditation in a fancy downtown LA yoga studio smelling of Frankincense and populated by flexible twenty-somethings who inspire thoughts very different than those of meeting your untimely end. Sometimes embracing the uncomfortable brings a paradoxical comfort, and sometimes embracing what appears to be comfort is just wallowing in bullshit.
[3] Larry David, and other comedians, being interesting examples of people who other people like to hang around typically because of their generative negativity.
[4] The excessively length and repetitiveness is a symptom of the publishing industry’s pathologies, but that’s a rant for some other time.
[5] On the flight to Manifest, the nerd conference associated with the Manifold prediction markets, Bess and I sat near a guy who works as some kind of project manager for constructing data centers. He said he likes working on buildings because the process is so much cleaner and neater than working on or with humans. Working in the ER might melt his mind, since so much of it is the antithesis of clean or neat.
[6] Bess has a half-finished essay on this tendency, and the tendency of people not to listen. When I answer in a chirpy voice, “I’m dying, which is pain and quite bad,” some people go, “That’s great man, good to hear it.” Listening is a rare skill.
Most of the “alternative” cancer care groups are quacks and charlatans pitching dubious diets, but “most” is not “all” and an outfit in Mexico called “The Williams Cancer Institute” caught my attention because they’re offering legitimate treatment—for example, they’ll inject legitimate immunotherapy agents like Opdivo straight into tumors.[1] They’ll also perform Pulsed Electric Field (PEF) ablation, which has some research showing potential efficacy; PEF may stimulate tumor antigen release in a way that allows immunotherapies to identify the tumor antigens and thus attack the tumors themselves. The possibility of tumor response from PEF and immunotherapy is real, as opposed to the “eat our special diet” people, or the “energy” healing people, or the homeopathy people.[2]
In “The financial costs of healthcare costs, or, is keeping me alive worth it?”, I wrote about whether from a society-wide perspective the care I’ve been consuming passes a reasonable cost-benefit analysis. But that essay primarily assumes a system in which health insurance or a public healthcare system is paying—I’ve also faced the question more concretely, because the Williams Institute is in Mexico and all payments are cash. Is $200,000 for treatment that would probably not cure me worthwhile?
Get cancer[1] and you’ll be inundated with advice about food, most wrong and much contradictory: avoid sugar; processed food kills; meat promotes cancer; ketogenic diets are incompatible with cancer; milk is dangerous; milk is healing; cancer is impeded by vegetables; honey is good; tea is safe; coffee is dangerous; tumors like Adderall. I think people latch onto diet-based advice, like they do prayer, as a mechanism of control, even if the mechanism is faulty, in a situation where any control is highly medical and scientific and thus beyond the typical person’s abilities. Today, the most common form of nutrition advice is to avoid sugar, even though no evidence suggests that a low-sugar diet will eliminate or reduce cancer (“cutting out all sugars doesn’t actually fight existing tumors”)[2]. Sure, it’d be nice if one could follow a particular diet advice in order to eliminate tumors. “It’d be nice” is not the same as “it is true.”
There’s a human tendency to crave control even if craving control isn’t well correlated with true control over a chaotic, uncertain world. One sees this, for example, in people who erroneously think driving is safer than flying—a driver has some control, but, on a per-mile basis, flying is way safer. We imagine that that we’ll evade the drunk driver, the woman distracted by her smartphone, the dude yelling at his kids. In reality, we don’t control the cars and distracted drivers around us. By contrast, no amateurs fly large planes, the pilots are sober experts, and the FAA extensively digs into any crash to figure out how to prevent the same thing from happening again.
We collectively (and bizarrely, in my view) accept 40,000+ car fatalities every year in the U.S. alone. To me this is insane, but I’m the weirdo in that most people don’t think statistically and accept the fact that people they know and sometimes will be seriously hurt or killed in car crashes. In Sweden, however, there’s an effort to understand the factors underlying serious car crashes, and, because of that effort, “Today, Sweden has some of the lowest rates of road traffic fatalities in the world.” In the U.S. and much of the world, we tend to blame individual drivers, instead of systems; systems, however, can (and should) be improved. In Sweden, “officials were no longer allowed to design roads for idealised drivers who never became distracted or exceeded the speed limit. They had to make roads for real people who made mistakes.” Drivers still drive, but the roads are built to limit the ability of people to kill and maim one another. Real control happens at the level of the system.
I’m not saying striving for control is bad; given the frantic, relentless efforts Bess and I have put into keeping me alive, it’d be peculiar and hypocritical if I did. Striving for greater control is good, but grasping at illusions is not, particularly if those illusions are deleterious to the desired outcome, like, for me, staying alive via clinical trials. Individuals influence their cancer risks; not smoking, or not smoking much, is an obvious way. And it is true that high sugar intake is a risk factor for developing cancer. Once someone has cancer, though, eating sugar (or not), or eating meat (or not) isn’t going to affect the cancer’s course. What will is the usual: surgery, chemotherapy, radiation therapy, oncology treatments (like the bispecific antibody I got, or the antibody drug conjugate (ADC) I’m on now). I’ve been on a low-sugar diet for more than a decade, and that didn’t stop a squamous cell carcinoma from growing in my tongue. There’s a correlation between a low-sugar diet and avoiding cancer, but it’s far from r = 1.0.
In March I learned that the previous clinical trial I’d been on, petosemtamab, had stopped working, and the tumors in my neck were an average of 20% bigger: a lot of growth in an ominously small space. That news set off a furious, exhausting, consuming effort to find the next clinical trial; pick the right one, and I’d get more time with Bess. Pick wrong, and die. The eventual answer was PDL1V, a Seagen-Pfizer antibody-drug conjugate (ADC) that has caused and is causing a lot of side effects—but it’s also working. On April 4 and 5 I got CT scans to qualify for the PDL1V trial, and the CT scans were ugly: the radiologist reported “Progression of disease including tumor interval enlargement and increased extent” and found “enhancement” or “worsening” in every tumor, as well as some lymph nodes. Two large lumps grew from the left side of my neck and jaw. Every day, I felt worse, and headaches began in the last week of March or first week of April. I wasn’t sure whether I’d make it to the next treatment. In mid-March, Bess and I debated whether I should get a round of systemic chemotherapy in order to increase the probability of me living long enough to reach the next treatment. PDL1V, however, requires no more than two previous lines of systemic therapy, and we learned that Seagen-Pfizer would consider an extra round of chemo, even the same chemo that I received in August and September 2023, as a new “line” of therapy—rendering me ineligible for PDL1V.
Right now, from a society-wide perspective, the healthcare I’ve been getting to keep me temporarily alive against a squamous cell carcinoma onslaught probably fails the cost-benefit test.[1] In the short term, resources are finite and the tremendous financial cost of care likely isn’t worth the benefit of my life, relative to the costs of other interventions that would heal people with less serious maladies and longer life expectancies. Probably it sounds strange for me to say: “Keeping me alive isn’t justified,” but I think it worthwhile to be intellectually rigorous and honest even about sensitive matters like the literal monetary value of life. In some abstract metaphysical sense, human life might be beyond value, but we practically put a price tag on lives and risk to life all the time (example: “Studies of real-world situations produce relatively consistent results, suggesting that average Americans value a year of life at $100,000 to $300,000”).
I don’t have a strong view about the particular numbers, but the general principle is sound, and outfits like Givewell.org search “for the charities that save or improve lives the most per dollar.” Givewell’s top charities right now are for malaria prevention (“In 2022, we directed funding to the Malaria Consortium to support this program at an estimated average cost-effectiveness of $5,000 per life saved”) and vitamin A deficiency amelioration (“In 2022, we directed funding to Helen Keller International to support this program at an estimated average cost-effectiveness of $5,000 per life saved”). Unfortunately, “charities” like Greenpeace prefer to murder children by holding up “golden rice” that has vitamin A in it, but you can read more about that terrible choice at the link. Five-thousand dollars is less than the cost of a typical treatment I receive, but the mystery statements I get from my insurance companies indicate that more than $5,000 is being spent on me per month (though the numbers have more than a whiff of the made-up about them).[2] Recurrent / metastatic head and neck squamous cell carcinoma (R / M HNSCC) is incurable, too, so extra dollars don’t buy much time, and the time they do buy is degraded by pain, fatigue, inability to swallow, and so on.
The big caveat to saying that I’m not worth keeping alive, though, outside the value the people who love me claim I provide, is that I’m also generating data for clinical trials helps move the state-of-the-art forward. Participating in the MCLA-158 / petosemtamab trial, for example, yielded one more data point showing that petosemtamab shrinks notoriously hard-to-treat R / M HNSCC. By pursuing treatment through clinical trials, I’m helping others in the future (more on that later). Still, my quality of life is low, and while treatment has been extending my life, it almost certainly won’t lead to remission. Even if a clinical-trial drug somehow leads to complete remission, I’ll never be able to sleep or speak normally again. Life without good speech or sleep or swallowing or chewing is not easy, yet I’m trying to continue to contribute to the human enterprise within the many limitations I’m subject to. A few months ago, my brother casually referred to me being disabled, and I was momentarily confused: Who was he talking about? But he was in fact right: I’m disabled and unlikely to ever be able to think or work in the way I did before losing my tongue, which also lowers the value of any healthcare I receive.[3]
Some of these musings are adapted from Derek Parfit’s Reasons and Persons, and more directly from Peter Singer, who is I think the first to posit hypotheticals along the lines of “You are wearing an expensive suit and shoes worth many thousands of dollars. You see a child drowning in a pond. Would you leap in to save the child, and ruin your suit in the process?” Everyone says yes. But then why not donate the same amount of money to save a child in Somalia, or wherever? Aren’t those two morally and logically equivalent? Yet hardly anyone lives that way, myself included. There is some kind of immediacy bias in the human mind, where something proximate to us registers as more vital than something distant in space and time.
The rejoinder to the idea that one should curtail status consumption to donate to save distant people is usually something like: “They are poor and their healthcare systems work poorly due to social and government dysfunction; fix that dysfunction so that they become rich and the apparent trade-off will go away.” Countries like South Korea and Taiwan used to be desperately poor and now are rich because they adopted smart policies. Nothing is stopping many African countries from doing the same. India abandoned autarky and embraced markets, and now it is far richer than it used to be. Countries like Syria and Iran are not poor due to a lack of donations, they’re poor due to horrific governance by Assad and mad, freedom-hating mullahs.
Hypothetically, even a billionaire would probably hesitate to pay $1 billion for a single extra day of life; the vain and egotistical would prefer to build a monument or something, versus one day more. Most of the world’s poorest people would find a way to pay $1 if it could extend their life by five years. Between those extremes lie real-world tradeoffs, which are of course hardly ever so clean.
Insurance further muddies matters, because if someone else is picking up the tab, most of us want more treatment than we would otherwise. European countries with public health systems solve this problem through committees that decide which treatments are worth it; they also wrangle with drug companies to set price caps (the U.S. is the market in which drug companies make all their money, and consequently the FDA is the limiting factor on new treatments, which is why I complain so much and so vociferously about them). It’s not surprising that I personally would prefer other people pay more for me, and I personally would like to pay lower premiums, while everyone else would like the same for themselves. Moral hazard is operating. The U.S. has mostly chosen a high-cost, high-care regimen, while European countries have mostly chosen a lower-cost, lower-care regimen, which limits care for the walking dead like myself.
Scott Alexander observes that he’s “seen patients with terminal illnesses who are very happy they chose to just let it progress and not spend their last few years in medical trials, and other patients who are very happy that medical trials gave them another year or two with their family and whatever else they were trying to accomplish.” For me, I’m continuing to do clinical trials for the sake of Bess, and spending more time with Bess. Absent her, I’d have taken the opioid road in June 2023. Recovery from the total glossectomy demanded 24/7 care that I wouldn’t have been able to receive from anyone else, and I wouldn’t really have had enough to live for. We humans really live for one another,[4] and without other people and especially love, why bother?
Some of the healthcare I’ve received easily passes the cost-benefit test. Take the R / M HNSCC that’s killing me: I got a partial glossectomy in Oct. 2022. Mine had some high-risk features, but I was assured that, with radiation therapy, it wouldn’t recur (Bess recalls the exact words being, “Don’t worry, this won’t be what kills you”). If it hadn’t recurred, the costly surgery and radiation would’ve led to many more years of positive, fulfilling life. Hardly anyone will find surgery and radiation pleasant, but they left me without substantial, disabling deficits. In retrospect, however, I obviously should’ve been given chemo with the radiation, but at the time I was pleased to not need chemo, and I foolishly didn’t look deeper into the data on recurrence—which is common for HNSCC—and I didn’t seek second opinions. Some of those second opinions might’ve said: “Get the chemotherapy.”
Docs are justifiably reluctant to impose systemic chemo because of the side effects, and they have to weigh present bodily ravages against theoretical future ones when coming up with a treatment plan. But the future of cancer treatment is much less violent. Transgene, for example, has a personalized vaccine that is supposed to prevent HNSCC recurrence: “In the head and neck cancer trial to date, all patients treated with TG4050 have remained disease-free, despite unfavorable systemic immunity and tumor micro-environment before treatment.” That’s a tremendous boon, particularly if it doesn’t involve the deleterious side effects of chemo or radiation. Most of these personalized vaccines have essentially no side effects. Moderna’s mRNA-4157 platform looks great, not only in R / M HNSCC, but in melanoma and lung too. Right now mRNA-4157 is only being tested in the recurrent / metastatic setting, as far as I know, but the logical time to use it is probably when initial surgeries are done: cut the cancer, sequence it, and then vaccinate against it to prevent recurrence. Technology is going to reduce the trade-offs between “painful, difficult treatments with difficult short- and long-term side effects” and “successfully eliminating cancer.”
The future, which I’m distinctly though barely missing, is going to be brighter than the present. I’m reading a biography of Richard Feynman, whose first wife died of tuberculosis (TB) in part because the scientific / medical establishment wasn’t able to get its act together regarding antibiotics: “the first clinical trial of streptomycin” began with only two patients in the fall of 1944, despite TB being a death sentence. And it wasn’t until August 1945 “that the Mayo trial had expanded to as many as thirty patients.” Finally, “In 1947 streptomycin was released to the public”—two years too late for Arline Feynman.
Arline was at the end of the era of deadly bacterial infections; I’m at the end of one era of cancer treatment and the dawn of another, but I’m going to miss surviving because I’m a few years too early, and because the FDA so effectively blocks innovation, even for those of us with terminal illnesses who are happy to trial a new drug when the alternative is certain death. The terminally ill are not incompetent children incapable of understanding risks and giving consent, and the paternalism of the FDA, which intends to protect us from potential pharmaceutical harm, does so by choosing death as the lesser evil for patients like me, instead of giving us the choice to risk theoretical harm in exchange for the possibility of a longer, better life. We should have a meaningful right to try.
Letting patients try isn’t just potentially good for the health of patients, it’s a financially sound decision for everyone: Pharma companies want to sell drugs. Insurance companies could save the extensive costs of ongoing treatments by supporting payment for innovative therapies like cancer vaccines that prevent recurrences. Since 45% of cancer diagnoses are in patients aged 20 – 64 years old, it would benefit the government by having a large chunk of taxpayers able to rejoin the workforce. That’s money in everyone’s pocket. That’s human flourishing, which the FDA is blocking.
There are other substantial, lesser-discussed costs to consider: for example, many trials are only available at a handful of hospital or clinic sites around the country, and finding an appropriate trial, even for patients in large metro areas with research-heavy institutions, means having to travel to the trial. I’ve not only been spending insurance companies’ money (“insurance companies’ money” is another way of saying “almost everyone’s money”); I’ve also had to pay for flights, accommodations, and incidentals to receive any treatment at all via clinical trials. We’d live in a better world if the FDA and drug companies would move to virtual, decentralized clinical trials, in which instead of me expensively shipping myself to a trial site, the drug company ships the drug in question to a local site that passes whatever quality metrics might be necessary, and I get treated locally.
Many potential sites already exist. HonorHealth Research is one, located in the Phoenix area about a fifteen-minute drive from me, and it seems like a reputable place for clinical trials. There’s no reason I can discern for not being able to ship the drug products to HonorHealth, give them specific instructions (“8mg of dexamethasone 1h prior to infusion, 50mg of Benadryl, watch for infusion reactions…”) and then have the doctors and nurses at HonorHealth carry out those instructions. Unfortunately, right now that’s not how the system works, and so I wind up on a lot of airplanes, when a 200ml bag of petosemtamab or PDL1V or whatever could instead be shipped to Phoenix.[5] The carbon footprint of flying me around has to be far greater than that of flying something that is like 1/200th of my mass. America is not easy on the environment and so much superfluous flying makes things harder, despite my subscription to ClimeWorks’ direct air carbon capture service.[6]
Beyond that, not all care is automatically covered by insurance, and Bess and I have to make hard decisions about what might be worthwhile and what might not be. I’m thinking especially of circulating tumor DNA tests, as well as tumor DNA testing; though DNA tests can identify targetable mutations that could guide me to effective treatments, they are considered “not medically necessary” by insurance companies. Not medically necessary for whom?[7]
I don’t know if there’s a takeaway from this essay, other than that life is hard and many decisions aren’t easy. I also appreciate everyone who has donated to the Go Fund Me my brother set up, and which has allowed me to pursue clinical trials and live far longer than I would’ve otherwise. Bess and my family and my friends appreciate that, too! A future in which personalized vaccines prevent the hardship I’ve experienced, and the death I’m to experience shortly, is also good, and the FDA is bad for holding back medical progress and inflicting so much misery on me. We can and should do better, rather than letting poorly structured bureaucratic mandates harm and kill thousands, if not millions, of people like me annually.
[2] I have not yet been eradicated, but neither has malaria, despite the charges. I’d wager that cancer will eradicate me before humans eradicate malaria, alas. There are malaria vaccines rolling out now, which is a tremendous advance in terms of human flourishing, and yet malaria vaccines wind up not dominating the news, which focuses on picayune status fights among political actors.
[3] I’m still dancing for my bread! Hence this new essay.
[4] Which is one of the many problems with pervasive narcissism.
[5] This is likely the FDA’s hand, because any misstep from an “approved” lab or site or infusion center might mean a multi-million dollar loss, as the data is considered unreliable. There are sites that spend years trying to open a study, but are denied, because of a minor squabble with something in their lab that doesn’t meet mystery criteria. Since most hospital-quality labs across the country are capable of performing the same clinical testing, I find it hard to believe that this is actually a clinical concern. Anything that makes the system slower, worse, and more expensive reeks of FDA regulation.
[6] Despite the present precarity of the biosphere, and the fact that we’re blowing by a 1.5 degree C temperature rise from pre-industrial times, I’d like the future of humanity to be positive. Hardly anyone is remotely serious about making happen, however. Indifference and lassitude are human nature, I infer. I’m not exempt.
[7] “Not medically necessary” is sometimes insurance company shorthand for “It’s more cost effective for you to die than for us to pay for this, even if there is established evidence that it could lead to scientifically validated treatment(s) for you.”
When Francis Bacon said the remedy is worse than the disease, he wasn’t thinking of metastatic tongue cancer, where both disease and remedy are horrific in their own nightmarishly unique ways. Right now I’m facing a related dilemma, in that my cancer is aggressive and incurable, but the clinical-trial drug I’m taking is producing side effects that may themselves be deadly. Cancer treatment is of course violent: my tongue was cut out, my tissues burnt with radiation, my veins infused with both well-tested and experimental poisons. Cancer is violent too; the headaches I had before treatment left me with a foot in my own grave on May 24, 2023, the night Bess and I got married, and the night before the total glossectomy. We both knew I might not wake up from the surgery.
Despite the pain and the fatigue and the overall struggle, the choice to endure—to spend time with Bess, and writing, and trying to squeeze what I can out of life—has, well, endured. “Endure” means “enroll in clinical trials,” since the only existing treatments are palliative chemotherapy followed by death. When I was on petosemtamab / MCLA-158, the first clinical-trial drug, I endured full-body skin rashes and “paronychias” (infections and inflammation around the cuticles of the fingers and toes) that made it hard to type and walk. I bled a lot. When petosemtamab stopped working on Mar. 13, Bess and I scrambled madly, and I survived long enough to enroll in the Seagen PDL1V trial. I had high hopes that PDL1V would come with fewer side effects.
PDL1V is an antibody-drug conjugate (ADC), which, according to Seagen, means that the drug “specifically target[s] certain proteins that are found on the surface of tumor cells.” ADCs “recognize and bind tightly to targets expressed in tumors, while limiting binding to normal tissues.” Conventional systemic chemo causes numerous side effects because the chemo hits not only the cancer cells, but also all the other rapidly dividing cells in the body. ADCs are supposed to ameliorate that problem. PDL1V delivers a gnarly chemo agent called MMAE, which Wikipedia says “show[s] potency of up to 200 times that of vinblastine, another antimitotic drug.” I don’t fully understand what that means, although Bess says it basically has to do with a drug’s effects at a certain concentration, meaning that 1mL of MMAE is as powerful as 200mL of vinblastine. It does make MMAE sound like it’ll do bad things to tumors.
The question is, exactly how targeted is PDL1V? While I had fewer side effects from petosemtamab than the average patient, I appear to be on the other end of the curve for PDL1V—meaning it’s targeting the tumor, but it also seems to be targeting parts of me that aren’t tumor, too.
My first PDL1V dose was April 15, and I got through that week okay. Exhaustion and difficulty eating were the most prominent side effects. The second dose was April 22, and, like many ominous problems, the ones from that dose snuck up on me: by Tuesday April 23, I was feeling lightheaded, weak, confused, and generally out of sorts, which isn’t entirely unexpected when starting a new, experimental anti-cancer regimen. I’d seen the PDL1V side-effect list, too—fatigue, nausea, constipation, diarrhea, decreased appetite—a generic list of symptoms, and yet mine were consistent with them. Practically every medication carries a list of similar potential side effects, maybe because a lot of people are tired and have GI problems. Although I knew by Apr. 23 I was doing poorly and not eating enough (which is maybe not surprising given that I was sleeping or dozing for twelve hours a day), I checked my weight and discovered that I’d plunged from ~144 lbs down into the 133 – 136 lbs range. Crisis. It’s possible to starve to death by accident, since I’m never hungry and have to force myself to consume every calorie. But getting close to starvation will interrupt treatment, which is also deleterious. The world is full of perils, and Bess and I are navigating the cancer ones as best we can. If you’re reading this and wondering why a dip in my weight caused alarm bells, it’s because a series of seemingly tiny, benign problems can turn out to herald a crisis. I used to be robust, but now I’m fragile, and fragility demands diligence if I’m not to slip into the void.
In cancer therapy for an incurable malady like mine, there’s no promised land short of an extremely improbable, though not impossible, “complete response”—or permanent remission—but there are temporary safe harbors in which one can float for a time between dangerous ocean sojourns. Petosemtamab was such a relief. Sometimes what appears to be a safe harbor turns out to be infested with unexpected challenges, much as another may turn out to be too shallow, or controlled by pirates, or full. Last month I wrote seven thousand words about the epic journey from the MCLA-158 / petosemtamab clinical trial that kept my tumors checked from Sept. 2023 to March 2023, in “The emotional trial of clinical trials: It’s like online dating except if you choose wrong you die” and “The clinical trial trials: death by a thousand cuts.” It’s like The Lord of the Rings, except that the wizards and high elves are drug researchers, the men of Númenor are oncologists, and I’m basically a hobbit, sustained to a degree by courage and fortitude but fundamentally buffeted by forces frustratingly beyond my control.
If you read mountaineering disaster stories like Jon Krakauer’s Into Thin Air, there’s almost always a pattern: under-preparation; inexperienced climbers; failure to fully understand and incorporate how rapidly weather can change at altitude; and, perhaps most importantly, not turning back the minute the weather is changing for the worse. “Under-preparation” and “failure to recognize the truth of the situation” is probably a good, simplified version, and that happened to me: I wasn’t adequately prepared with GI meds like Zofran, Imodium, Bentyl, Simethecone, and even basic Pepto-Bismol. Even worse, on Apr. 23 I didn’t recognize what was happening to me, but Bess identified dehydration as a potential cause. Diarrhea causes dehydration and that in turn causes weight loss. Bess scolded me for not telling her of my GI symptoms sooner so that she could play doctor for me. Then again, is it playing doctor if she is a doctor?
By Apr. 24, two days after the second PDL1V treatment, dehydration became a focus of our efforts. In many if not most cities, a bunch of IV hydration companies have sprung up to cater to the hungover and coming-down-from-drugs crowd, and we live in prime territory for those clinics because numerous alcohol-dispensing points are nearby. Bess and I inadvertently moved into an area called “Old Town Scottsdale,” which is known for its bars and parties; you may read “inadvertently” and think: “How does one ‘inadvertently’ move somewhere? That seems like a pretty deliberate act.” While the moving itself was advertent, we left New York in 2020 during COVID and I picked our apartment based on its (relative) walkability, it being within acceptable range of Bess’s work, and the number of coffee shops within easy biking distance. I didn’t think to check for nearby bars. Probably we should’ve moved to downtown Phoenix, but Bess’s impressions of downtown Phoenix were decades out of date, and she thought it only fit for seeing a concert or a play, then driving away as fast as possible, unless one wants to score meth or paid sex of dubious quality beneath the Van Buren underpass.
Anyway, we did what we did and mistakes were made, but living beside a bunch of IV hydration companies proved useful because one was a two-minute walk from our building. By Wednesday, Apr. 24, I was being rehydrated, like a desiccated plant. Although IV bags through the IV clinic aren’t cheap—$100 for one liter, $150 for two—they’re much, much cheaper and more convenient than emergency rooms, which is where I was headed. My weight was low, my hold on consciousness becoming more tenuous, my heartrate up and erratic, while my blood pressure was down, and alleviating those problems was well worth the cash.
Unfortunately, I kept experiencing what we’ll call GI distress, which included feeling like my guts were being stirred with a hook every time I ate. The first round of PDL1V on Apr. 15 had caused exhaustion from the night of Apr. 17 until at least Sunday Apr. 21, but it didn’t cause a ton of GI issues, so those caught Bess and me off guard. The second round brought more fatigue, along with persistent GI struggles.
On top of the GI issues, we did get the go-ahead for spot radiation from Seagen / Pfizer, via START-Utah, the organization that is hosting the PDL1V study. So on Apr. 24 I got the two liters of IV fluids and my first session of spot radiation. The spot radiation immediately caused my neck to tighten, my voice to become hoarser and raspier, and my ability to swallow to be impaired. Bess and others point out to me, too, that radiation is commonly exhausting even for people not getting chemo-like agents. Still, I think the PDL1V accounts for the majority of the exhaustion, though I can’t rule out some contribution from radiation. When I got extensive radiation from Dec. 2022 – Jan. 2023, though, I remember the first three weeks of it not being bad in terms of side effects, and then the side effects getting worse by the day after that. But I wasn’t on any chemo agents from Dec. 2022 – Jan. 2023. I was, of course, also in much better physical shape then, and now I often seem a bit like a shambling reanimated corpse whose parts do not fit or act together all that well any more.
There’s also some evidence that MMAE in particular radiosensitizes tumors, and so we may have gotten some synergistic chemo-radiation effects. I feared, however, that the treatment might shrink the tumors and leave my neck fibrotic, and me unable to swallow semi-effectively, or speak. Then again, the tumors could grow and cause the same problems. Here we again see the remedy-disease conundrum.
Over the week of Apr. 22 – 29, the giant bulges on the left side of my neck have flattened out, which may imply PDL1V’s effectiveness. One site leaked a huge amount of goo reminiscent of the necrotized lymph node that startled me into an emergency ENT appointment back in November; Bess thinks the goo is necrotized tumor. The headaches that were plaguing me from the end of March through a lot of April were reduced in intensity, so it’s possible that the next CT scans will show PDL1V working well. It’s also possible that the radiation, potentiated by the drug, will make the PDL1V appear to have worked better than it would have on its own, even though I only finished two of my five spot radiation doses.
But the side effects and weight loss of the last two weeks make me doubtful PDL1V is sustainable. I spent most of Apr. 24 – 29 in bed. On Apr. 26, I foolishly drove myself to Mayo for a second radiation treatment while Bess was at work, when I should have taken an Uber because I could barely keep my eyes open. Eventually the GI problems petered out, but they were gross, and extensive, and even Imodium and related meds did not fully eliminate them. From Apr. 30 – May 5, I felt gradually better, but the absence of new material here on The Story’s Story gives a sense of how I was doing physically and mentally. I started writing this essay about PDL1V side effects on Apr. 26. It’s not like me to take two weeks to write an essay like this.
I got a third PDL1V dose on Monday, May 6, and now I’m armed with an army of medications to combat potential side effects: a dose of Aloxi (“super Zofran”—an anti-emetic) and 4mg of dexamethasone with the PDL1V itself. Lots of Imodium. Bentyl and Simethicone, for gut pain and cramping. Ativan at night. I think a couple of others I’m not remembering right now. The side effects have been better than they were after the second dose, but they’ve still been rough. Dr. Call, my oncologist at START-Utah, says that we can reduce the PDL1V dose in an attempt to cut back the side effects while likely retaining the anti-cancer properties.
There’s another possibility, too: right now we have a slot for an immunotherapy called BGB-A3055. Next week I’ll get CT scans to check and see what the PDL1V has done so far. If PDL1V has minimal anti-tumor effect, then leaving the PDL1V trial is easy. But what if it shrinks my tumor size by 30% or more, at the cost of me feeling abysmal for two weeks out of three, and barely being able to eat? How long can I keep this up, even with supportive medication?
The questions likely don’t have answers. I’m tired of being tired, after a mere three weeks of treatment. Most likely, we’ll get ambiguous results from the CT scans next week: tumors that are, say, 15% smaller—which is great, but enough to endure the GI problems and exhaustion?
Cancer brings with it a whiff of medieval torture options: would you rather be placed on the rack or quartered? Either way you’re torn apart. Either way, a third option would be preferable, though there is only one to choose from: whether or not to endure the cure or the disease at all.
Bess is the main reason to persist. It’s dispiriting to have poured so much effort into finding PDL1V and getting into the trial, only to find myself on a ship that seems to have a serious hole in it, and some seaworthiness questions. Yet that’s part of the experimental-drug process.[1] We make choices based on incomplete information and do the best we can with those choices. I didn’t foresee being walloped by PDL1V GI side effects. I didn’t foresee either the sweaty, intense, month-long period from Mar. 13 to Apr. 15 when finding a clinical trial utterly consumed Bess and me. In early April, I wasn’t convinced I’d make it to the next trial. Yet I’m still here, despite having shed pounds that I didn’t and don’t have to shed. Surprises pile up. Some are pleasant: I didn’t think petosemtamab would work, or that I’d see 2024, and yet it did and we’re now well into 2024. I’ve gotten to spend a huge amount of bonus time with Bess.
For now, my choice remains to endure. The question, as I contemplate whether it’s better to persevere on PDL1V or transition into the next study is: will the new drug allow me to?
The Story's Story 