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 Our extensive efforts to find and start another clinical trial have turned out to be futile, and I’ve withdrawn from the next-best potential clinical trial, BGB-A3055 in Dallas, at NEXT Oncology, because there’s no feasible way for me to do it (the people at NEXT,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.
Bess and I went to Manifest, which bills itself as “A festival for forecasting and prediction markets,” a description that may technically be true but fails to capture the spirit; to my eye and experience, it’s maybe more accurately stated as “Substack and Twitter live” or “a mixture of festival-conference-party-Burning-Man for nerds with many interests to show up and enjoy each other’s company.” Which is just to the temperament of Bess and me (though I’m still on a legacy WordPress platform; a year ago I thought about switching to Substack but didn’t because I thought I’d not be alive long enough for the switch to matter). Bess excitedly exclaimed it to be “Nerd Camp!” with a sort of takes-one-to-know-one gleam in her eye.
There’s something about seeing people in real life that makes me bearish on efforts to build the metaverse, which may be an improvement on text / audio / video but still don’t seem likely to replace live in-person interactions. Meeting in real life creates a kind of vividness and immediacy that online doesn’t (yet) create, and Manifest does just that. I recognized a huge number of people whose Substacks I’ve commented on and whose tweets I’ve replied to. A lot of people in turn recognized Bess and me, for our writing about the FDA killing people via inaction. Manifest attendees manifested a kind of earnestness that a better world is possible, that data should guide actions, that one should change one’s mind in the face of new evidence, and that what initially seems to be true may not be true. Those are all useful traits in getting past the FDA’s PR (something like: “we keep you safe from predatory drug companies”) and into the FDA’s substance (something like: “we don’t care if people are dying while our process runs; our process needs to run”). Nerd Camp was filled with people who believe that a good future is based on better predictions, and better predictions take both knowledge and calculated risk. No risk, no future: at least not a future that circumvents stagnation, and certainly not a future I am in.
The vast majority of the world’s information and ideas aren’t written down or otherwise recorded. It or they exist in people’s head and are expressed verbally. Gatherings of smart people don’t seem like they’re likely to be obsolete soon, which might qualify as bearish on AI. A humorous conspiracy theory called “Dead internet theory” claims that “the internet now consists mainly of bot activity and automatically generated content manipulated by algorithmic curation, minimizing organic human activity.” Manifest is an existence proof of the opposite, a real-life CAPTCHA: the people writing Substacks and making podcasts are gathered in one place. Would the people be the same as their online personas? Could they be better? One guy recognized my nametag and was like: “Hey, you’re the guy who lived!” Bess and I laughed.
Every single person Bess and I talked to was substantive, curious, and interesting, with the middle term being especially important. Given my lack of tongue, a common non-verbal reaction I get in everyday life is the other person thinking: “Why is the retard trying to get my attention?” I could use a more politically correct term, but I get the impression that that’s the one running in their mind. Anyway, I sensed none or almost none of that, despite being in fact very hard to understand. It’s a little like having a heavy foreign accent that no one else has; I’ve noticed that people who work in the tech industry, where people commonly show up from all over, are on average better at understanding me. I now do poorly at conferences yet I’m glad to have made Manifest. Bess observes that there is an assumption of competency at Manifest. Yes, many people had read us, but certainly not all. Everyone there, regardless of age or gender, was approaching interactions from a place of assumed reciprocal intelligence. Maybe this is what it’s like when everyone in a room acknowledges theory of mind. Or maybe it was from the sort of temporary tribalism conferences can create: “I think may people in this room are smart, therefore I am smart, therefore I, and everyone here, is part of this smart group of people.” Whatever it is, it’s a great way to approach a weekend.
One person said that she feels like everyone is somewhat autistic, and all conversation is in the form of parallel, consensual info-dump, or nothing. To me, greater informational content is great. A friend of ours met us on Sunday night, and she described it as a “carnival of the neurodivergent.” To which I say: great!
AI was a big issue there, and there seemed to be more people working on advancing AI than there were people working to advancing what’s sometimes called AI safety. The accelerationists and safetyists would be in the same room, sometimes debating each other, sometimes not. It’s interesting how discontinuous the AI contingent, whether safety or accelerationist, think the near future is going to be.
I’m undoubtedly not the first to contrast, on the one hand, claims of unique historical discontinuity from AI changing the world with, on the other hand, the stasis evident in the physical plant of Berkeley and other Bay Area cities. Bay Area cities have built hardly anything since the ‘70s, if not earlier. Infrastructure is ancient and rundown (including housing, roads, transit). We’re going to build the future in every respect, except for the physical world in which all the AI programmers live. Not even the many billionaires of the Bay Area have managed to build modern subways. Yet there is some upside to not having built “modern” infrastructure when that “infrastructure” consists of stroads and parking lots. Berkeley is still a walking or biking town, and Bess and I walked more than I have since the surgery in May 2023.
On a personal level, Manifest was amazing because it’s the first time since losing my tongue that Bess and I have gone anywhere or done much primarily for fun. Cancer treatment and cancer-related disability have dominated my life in the last year. Manifest first got on my radar when Austin Chen (co-founder of Manifold, the prediction market) emailed me in March. I looked at the Manifest website and thought: “This sounds awesome.” Bess is less keyed into Internet nerds than I am, and I had to try to explain to her who many of these people are; it’s a bit like a European trying to explain soccer to an American, or, worse, an American trying to explain American football to a European.[1] But she was happy at the prospect of going somewhere that isn’t a hospital and doing something that isn’t treatment.[2] We’ve lived in Arizona for four years and found few of our people here.[3] We’d probably have been better served moving to Austin, but the market for ER doctors is worse there, and we didn’t realize that headlines like “Apartment rents plummet in Austin” due to new housing construction would become common, while Arizona governor Katie Hobbs would veto housing bills designed to increase supply. Crazy! Anyway, most Manifest attendees appeared to be from California, but a significant number were from Austin.
If me going to Manifest had been a Manifold prediction market, the probability would’ve gone up and, mostly down, between me learning about the conference months before and getting there. Much had to go well, in a year and a half where almost nothing has gone well, that, despite booking plane tickets and a place to stay, I wouldn’t have placed a large-value bet on myself. In April I was terribly sick: tumors popped from the left side of my neck, making both Bess and me wonder if I’d live until May. On April 15 I began treatment with Seagen’s PDL1V, and the second dose of PDL1V on April 22 generated numerous adverse side effects. That week I also got some radiation therapy to try and counter the neck tumors. The good news is that the neck tumors necrosed and exited through a hole in the skin. The bad news is that I felt like garbage between April 22 to May 6, with side effects that challenged my ability to remain on treatment. But a new, extensive drug regimen helped me stay the course.
Then, last week, on Sunday, June 2, I noticed pain from the right side of my neck. Looking at it showed an unhappy red splotch—an infection. I started Keflex, an antibiotic, and hoped it would resolve the infection in time. Bess, doing what doctors do, poked at it (despite my protestations) and got some pus out. Unfortunately, I packed the Keflex in a suitcase with my Vitamix, checked the suitcase on the way to treatment to Utah, and then Southwest left the suitcase in Phoenix, which touched off predictable problems and resolutions. By Thursday I hoped I was well enough to fly, and that I wouldn’t need to upgrade from Keflex to Augmentin; the latter is like napalming one’s GI tract. Every morning during the conference, I wound up having to fight some gnarly GI problems, but I managed to get to Manifest by about noon. I managed to defy the implicit odds.
Lighthaven, the venue, was great, and the fridges well-stocked with Soylent, and I also saw pouches of Maya Kaimal Indian food. I didn’t know the specific brand name of Maya Kaimal, but I have some of them in my apartment and so could check. I saw a couple of Framework laptops, too, despite having seen just a few of them in the wild.
Robin Hanson calls it “probably my most pleasant event of the last year, since last year’s Manifest. :)”. With Robin, I feel like “pleasant” might be a slightly suspect word!
Bryne Hobart’s generalization of conference-going is behind a paywall, but he says that “The conference solves for specialization by inviting people around whom useful micro-subcultures nucleate, and it synthesizes high real estate prices by charging an entry fee (and plane tickets plus hotels are also going to have the same economic effect; they make time more expensive, so they raise the relative value of the highest-utility interactions)” and “Five minutes of in-person conversation create a more tangible sense of who someone is than years of occasional emailing, even if the emails are a better representation of their mental models. So future discussions are higher-bandwidth.” I’d not read until after writing a draft of the rest of this essay, I will add.
Bess says: “I will 100% return to nerd camp with you next year.” She is also looking forward to maintaining real-world connections via the internet.
[1] Which I’ve attempted, although not very successfully: I find American football tedious.
[2] Bess loudly and adamantly denies this characterization. “I think I know who Scott Alexander and Nate Silver are,” she squawks, like a penguin who wants a fish. “And I have a Substack!” Now she’s glaring at me. Now she’s explaining that she has never been able to understand the rules of football but is at least starting to understand the principles of writing for the internet as I’ve explained them. And she reads. Now she’s harrumphing, but is returning to continue editing this essay, so I must not be entirely off base.
[3] “Why stay, then?” you may justifiably ask. Jobs, family, and then me getting cancer all make moving impractical, and the gains from moving lower than they’d be if I were well.
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.
One year ago today, I went into surgery expecting that I’d lose half my tongue to a squamous cell carcinoma recurrence. The evening before, Bess and I got legally married;[1] it was a short, but charming, crash ceremony. I say “crash ceremony” because we wanted to marry before surgery, and on afternoon of May 24 I learned a spot had opened for the next day. It was only luck—if you could call any part of this story “lucky”—that Bess and I had picked up our marriage license a few days earlier, expecting to wed sometime before the planned surgery date of June 8 or 9.
The tumor itself has only been confirmed on May 11: I got a “hot” PET scan on April 26. Mayo Phoenix initially scheduled follow-up CT scans a few weeks later to figure out what was going on, but Dr. Hinni, the ENT surgeon at Mayo who saved my life, did not like that delay (he dislikes any delay, a trait which has likely saved my life on several occasions) and ordered them stat, so on May 1 I went in to find out whether I was likely to live or die.
The Story's Story 