Uncomfortable truth: How close is “positivity culture” to delusion and denial?

June 24, 2024 By Jake Seliger in cancer, Culture, Essays Tags: cancer, Culture, Essays 3 Comments

“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’s OK 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.

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

[1] His story was also garbled and nonsensical, and I didn’t have the energy to seek real clarification.

[2] Often unconsciously.

[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.

Manifest, the Manifold Markets nerd festival

June 13, 2024 By Jake Seliger in cancer, Cities, Culture Tags: berkeley, Cities, Culture, festival, manifest, manifold 3 Comments

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.

If I’m alive this time next year I’ll go back!

Other Manifest commentary:

Theo Jaffee has a good podcast and wrote “Manifest Manifested: One of the best weekends of my life at the best conference in the world.” I look to be older than him and while I thought it great, “one of the best weekends of my life” is a high bar. Then again, I don’t know what his life experiences have been or, more importantly, what happened at the Saturday night after-party which went till about 4a.m.
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.
Tracing Woodgrains, someone I’d not heard of before but who appears to have some Internet microcelebrity, on Manifest: “For much of my life, I have poured my attention into tough-to-explain solitary pursuits, finding myself often sitting in quiet corners on the fringes of gatherings wondering if they’re worth the effort. Not so last weekend.” Woodgrains seems to have had an interesting life so far.
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.

The financial costs of healthcare costs, or, is keeping me alive worth it?

May 16, 2024 By Jake Seliger in Culture, Essays, Personal Tags: cancer, Culture, Essays, personal Leave a comment

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 1/200^th 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.

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

[1] Adapted from comments originally left on Astral Codex Ten.

[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.”

“Woman-to-Woman-to…Huberman:” What journalism looks like from the inside

May 6, 2024 By Jake Seliger in Critics, Culture, ideas, Publishing Tags: Culture, huberman, Media Leave a comment

This is written by a woman (and friend of mine!) who wishes to remain anonymous.

When the article about Andrew Huberman was published in March, I wasn’t surprised, because “Sarah” had contacted me months before, seeking answers from women she says didn’t know about her, though they were having sex with her then-partner, Andrew.

On a Sunday night in February, I received a text from an unknown number—the texter introduced herself as “Sarah,” the woman Andrew shared his life with for the last five years. She shared deeply personal, deleterious, and unsubstantiated details about Andrew cheating on her with four to ten women, spreading rumors about her, and verbally abusing her. She assumed I was one of those hapless women, and she apologized for being the one to tell me. She was cloaking gossip in virtue, though she reassured me that she held no ill will against me and saw me as another victim. All of this happened before ending her opening message to me by asking me, “woman-to-woman,” to bring her comfort and closure by admitting that I was sleeping with Andrew.

I felt a mix of shame, suspicion, confusion, hurt, degradation, empathy, and curiosity. Who was on the other end of this message? Could I trust her, or him, or them? Was this a trap? What sort of nightmare love triangle did Andrew drag me into? “Triangle” is probably not even the right geometric shape. I asked her how she found my contact information. It was hard not to feel solidarity with her, she was kind and spilling her guts about her heartbreak—yet, her approach was unapologetically intrusive and felt manipulative.

Sarah said she found my name in Andrew’s journal one day and instinctively took a photo of the page and later googled me to find my number. When I asked why she’d assume I had an “affair” with Andrew after reading my name in his journal, she replied: “Because of him talking about a long-term relationship…with somebody beautiful. I looked at your picture and you seemed beautiful and private.”

I admit some susceptibility to flattery, and yet it was as if Sarah thought I owed her answers regarding my relationship with Andrew. After I felt confident that this was the woman that Andrew had been seeing for the last few years, I told her that I’d not seen Andrew since before the pandemic. She rapid-fire texted:

“So he cheated on me with you in the early part of our relationship?”
- No, I’ve been in relationships.
“Oh, he reached out, but you didn’t accept.”
- No.
“Were you in a relationship with him? Or was it just more casual?”

I told Sarah I’d not been romantically involved with Andrew since before their relationship started in ~2018.

She declared how relieved she felt and we discussed in limited detail our histories with Andrew. Sarah said nothing about going to the press and I said I wasn’t interested in any sort of PR takedown of him. It’s possible she wasn’t planning to at that moment, but I felt she had an agenda beyond closure. I thought she wanted revenge.

I told her I’d known Andrew for nearly 20 years and was aware that he had some struggles in his relationships—and don’t we all! Sarah said she was also aware of his past. Despite what she said earlier in her texts, Andrew had nothing but very positive things to say about her whenever I spoke to him. He told me all about their struggles with fertility and how much he loved their shared life with her children from a former marriage. While Andrew and I had dated off and on for many years, he did not reach out to me for anything romantic when they were together, indicating to me that he must be quite committed and in love with her. I expressed compassion and empathy for her and with any woman he’s not been truthful to, but I also expressed sympathy for Andrew because I know that, despite himself, he wants a life partner. The whole thing seemed sad to me.

After Sarah realized I saw Andrew as more than what she and these other women experienced (he is more than that), she acknowledged Andrew was generous and kind with her in many ways throughout their relationship. She repeated to me that part of her healing process is knowing the full truth. I am sure she meant this, though I don’t know where she picked up this notion or how she knows it’s true. I think she should read Esther Perel’s books. The sense that she was seeking more than “healing” persisted. The truth came out when the article hit.

I can’t decide what stood out to me more when I first read it: that Sarah cherry-picked whose contact info she provided to Kerry Howley, conveniently excluding me, or that a story which doesn’t amount to much more than a gossip column about an accomplished neuroscientist-turned-podcaster’s propensity for wandering made the front cover of New York Magazine. There’s no abuse of power, no exploitation, no inspirational story of female empowerment—there’s simply an opportunistic journalist writing an unflattering portrayal of Andrew Huberman as a narcissistic, philandering liar. Is someone’s admittedly salacious private life news?

Howley might’ve squandered an opportunity to empower women who may have felt powerless in their relationships or perhaps open a dialogue about the complexity of human relationships gone awry. Something about how these women found themselves involved and, in some cases, in love with a man who seemed unreliable and even deceptive in his personal life while earning a public reputation as thoughtful, insightful, and charming. Instead of complexity, she chose simplicity. Howley didn’t explore the characters or backgrounds of the women in this story. Who are they? What were they seeking? Had she done more diligence of her own, Howley would’ve at least alluded to the background of one of them whose company was investigated for consumer fraud and sued by former employees for wage theft—clear instances of deception and abusing one’s power. The latter of the two was settled out of court and as they say, guilty people don’t settle (looking at you, Michael Jackson).

Instead, Howley wrote about a series of anonymous women who say they thought they were in a monogamous relationship with a man, only to find out it was not monogamous at all. She highlighted how he repeated the same lines over and over again to these women. A lot of the language sounded familiar to me—oh wait, that’s because I’ve known Andew for years. I’m pretty certain my vernacular doesn’t reinvent itself every time I’m in a new relationship, and I’m pretty sure that’s true of most people. The article also includes a number of barely corroborated, seemingly petty things Andrew lied about to demonstrate his supposed lack of moral compass. One that stood out to me was that he lied about living in Piedmont, a wealthy enclave in the East Bay. Andrew’s home, while technically not part of the Piedmont zip code, was a literal stone’s throw away. The article felt like a jilted-lovers’ fantasy come true: an expose detailing every dark and mortifying secret about your cheating ex.

Perhaps there just wasn’t a great story to tell and that’s why it merely reads as gossip. Were Howley and the New York Magazine editor also duped into sleeping with Andrew Huberman under the guise of monogamy and a great future together? Did they do it anyway, for the story?

Look, I get it. I have a pretty deep well of empathy for a woman scorned; I tell friends that I’ll provide transportation across international borders should they seek revenge and need to make a quick getaway. What I really want my friends to know when I make that joke is, if anyone ever betrays their trust, I’ll empathize with their feelings of anger and hurt and won’t judge them for acting out while they process it.

I’ve been inspired by women who seek revenge on their exes, particularly when they empower themselves as women in the process. The difference between empowerment and disempowerment is important. One such example is the article that Justine Musk penned herself about her ex-husband, Elon Musk. Justine didn’t write this anonymously or use it as an opportunity to unearth gossip from all corners of Musk’s life (even though I think he deserved it then and deserves it even more now), weaving together a hit-piece without any substantive commentary on the complexities of life and relationships. Justine bravely laid bare her participation in the slow relinquishing of her own identity and career in support of her talented but painfully insecure partner, who turned around and dumped her anyway. The story inspires because it’s multifaceted, introspective, and offers insight into how someone might find themself in that exact same situation. And perhaps a roadmap to escape it.

The Sarah I communicated with in February sounded capable of writing something more cogent and inspiring. Something revealing, and introspective, while also untangling the complexities of getting involved with someone we can’t fully trust. I think Howley failed her by turning this article into the hack job that it is. I don’t know whether Sarah or these other women found closure or peace of mind by participating. I can’t help but feel like this article could serve as a lesson for Andrew and for them, but one that the author failed to articulate anywhere among its 10,000 words. What stories aren’t being told as this one is? What would someone with a broader, more humane vision of the world than Howley’s have done with the material? If we’re going to talk about lying, why don’t we talk about Sarah’s motives, and what she said when she approached women on Howley’s behalf? Why aren’t we looking into the relationship between Sarah and Howley?

Much of the legacy media has turned into a hit-piece machine. It’s sad, but also common, and yet I still think many people don’t realize how the media sausage gets made. Once a journalist has a point of view, they often act like a prosecutor. We saw what the New York Times did to Astral Codex Ten writer Scott Alexander. Now we have this attack against Huberman. I don’t condone his dating habits, but I also don’t think this amounts to a public story. Ryan Holiday published Trust Me, I’m Lying: Confessions of a Media Manipulator back in 2012. A dozen years later, it remains distressingly relevant. I want someone to investigate Howley and Sarah, and tell us how the article came together. That’s the story that’s most important to the public interest, because so many of the media’s sleazy operations are cloaked in secrecy. I can reveal just a little bit of that story: “journalism” can pretend to be a private story when it’s actually prep for a public social attack.

Many of us have unfortunate periods in our romantic histories, or pathologies we battle in our relationships today. But if you become famous, you become a target for the Howleys and New York Magazines of the world.

I don’t think there is a there there with this story. I think Sarah and Andrew did have real love and a real relationship, and she knows Andrew. She knows about his childhood, about his struggles to get where he is, about his deep desire for a loving family. Regardless of how much Howley attempted to undermine and trivialize it. I’ve had men betray me and I’ve fantasized about their personal or professional demise. But over time I’ve come to see them more fully. They are more than the hurt they caused me, and they were more to me than the hurt they caused me. Someone once told me that the only thing more emotionally damaging than feeling abandoned or betrayed by someone you trust, is abandoning our own sense of truth and morality. I believe that. But, if you’re my friend or a woman in need and your man has cheated on you, you know where to find me if you need a getaway car.

In which the squamous cell carcinoma tumors in my neck grow by 20% in two months

March 18, 2024 By Jake Seliger in Culture, Essays, Personal Tags: cancer, clinical trials, Essays, personal 6 Comments

The four tumors in my neck grew by an average of about 20% from Jan. 16 to Mar. 11—and that’s after they shrank by about 20% between Sept. 27, when I got my first dose of the bispecific antibody petosemtamab, and Jan. 16. Existing published data shows that “Of the patients who responded [to petosemtamab], the median DOR was 6.0 months.” I’m a bit under the six-month mark, and three neck tumors are substantially larger:

* 38 x 27 mm -> 43 x 33 mm

* 29 x 16 mm -> 35 x 18 mm

* 22 x 14 mm -> 29 x 21 mm

(I don’t understand how radiologists evaluate a three-dimensional object like a tumor with two-dimensional measurements,[1] but radiologists are, like pathologists, part of the hidden, antisocial,[2] subterranean section of the medical system, rarely interacting with humans (or light), sleeping by day and waking by night, and subsisting on a diet primarily of human blood, supplemented by small mammals when none is available.[3] So I’ve not gotten a chance to ask what’s up with the two-measurements thing when there ought to be three.)

No tumor is yet impinging on critical structures, which is nice, although one is poking out of my neck, which is less nice. One oddity is that my lung tumors are stable and one even seems to have resolved, despite the growth of the tumors in my neck. Dr. Sacco, my oncologist at UCSD, said she’s never seen a patient’s lung and neck tumors diverge in response like mine. If that means anything, I don’t know what.

So now Bess and I back to scrambling for a new trial—and “scrambling” is the right word, despite all of our effort to avoid having to scramble. Most trials mandate a 30-day washout period,[4] and I got my last petosemtamab infusion on March 13, and thus a goal is to receive the new trial drug by Monday, April 15. I thought I had two good options for a Seagen trial of an antibody-drug conjugate (ADC): one at UCSD at one at MD Anderson (“MDA”) in Houston. I thought (incorrectly, it appears) that UCSD would host Seagen’s “A Study of SGN-PDL1V in Advanced Solid Tumors,” but there are two issues: one is that there are actually two different Seagen trials that I’m eligible for. The other is that there’ve been delays in opening a Seagen trial at UCSD. My tumors are growing too fast to wait around to see when it might open. Some trial sites report years’ worth of delays for something as finicky as “the drug company doesn’t like the hospital’s supplier of saline,” or something equally ludicrous. Maybe an astrologer told Seagen now isn’t an auspicious time?

Adding to the complexity, “PDL1V” is one Seagen trial. The other is SGNTV-001, which is the innovaTV 207 trial. SGNTV appears to be the trial available at UCSD.

You may have read the above paragraphs and thought: “Seagen trial one, Seagen trial two, who cares?” But the difference may be critical to whether I live or die. Few people understand how maddening and challenging the clinical-trial system can be, which is part of the reason I’m describing what’s happening to me. The SGNTV trial is one that, back in August or September, a research oncologist who hosted an SGNTV trial site told us wasn’t looking so good.

We listen carefully to oncologists and take what they say seriously. But data from 2022 says that “Tisotumab Vedotin Shows Promising Efficacy and Manageable Toxicity Profile in Phase 2 Study of SCCHN:” “Results from the phase 2 innovaTV 207 study (NCT03485209) showed a confirmed objective response rate (ORR) of 16% and an overall disease control rate of 58%, along with a tolerable safety profile.” By the standards of recurrent/metastatic squamous cell carcinoma (R / M HNSCC), 60% is pretty good. An abstract from 2023 reports that “15 pts with SCCHN were treated” and “Confirmed ORR was 40%.” “Stable disease” also qualifies as “pretty good” by R / M HNSCC, and “ORR” doesn’t include patients who have “stable disease.” “Stable disease” is anything that is plus or minus thirty percent in size from the original. The disease control rate of petosemtamab was around 70%, and petosemtamab is arguably the most promising drug for what I have.

Should I try for PDL1V, or SGNTV? Although finding an open trial site is a challenge, so is ranking the trials. PDL1V is being held at MDA, where I also established care back in November (I wrote about that in “Finally, some good tumor news, but, also, hacking up blood is probably bad”). But the physician with whom I established care there is out of town until Mar. 25. MDA has, let us say, not made it easy to consult with someone else about a PDL1V trial slot. Waiting two weeks and then finding out that there isn’t a slot available at MDA could be fatal. Bess and I are working to figure out if we can talk to someone else at MDA about a PDL1V trial slot. None of the other 12 places I established care are hosting either of these trials, so we’re back to searching on clinicaltrials.gov for other host sites and trying to beg our way in quickly.

Is SGN-PDL1V likely to be better than SGNTV-001? PDL1V began in 2022, and SGNTV began in 2018, so PDL1V is newer. Are clinical trials like graphics cards, in that newer is better? I don’t know. The oncologist who said SGNTV didn’t look great said so in 2023, but more data has presumably been generated between September and now.

The third drug is NT219. We’re trying to get an appointment at Cedars-Sinai hospital in LA to learn more about it. There’s hardly any published data about NT219. UCSD had an NT219 trial, but that’s not open any more. Has NT219 failed? On clinicaltrials.gov, no sites are listed as recruiting. Drug companies keep early data close to their chests. The best bet is to talk to a clinical investigator involved in the trial and hope they drop an information nugget, or make a vague hand motion indicating whether a drug is doing well or poorly. Many, but not all, are loath to say, “My observation is that x% of patients are responding to the drug,” and the ones who do play a heavily weighted role in my deciding how best not to die.

“Not dying” is hard. I’ve got an appointment at a PDL1V site in Salt Lake City, Utah, at South Texas Accelerated Research Therapeutics (START)—Rocky Mountain. The organization’s name may be “South Texas” but that the site is in Utah. I’m also working on getting into START—San Antonio. The variability among hospitals in terms of intake and acceptance is massive—both START sites, like UCSD, have made getting appointments and getting into their systems straightforward. It’s almost as if they realize they’re a research institution and want research subjects. I can’t decide if it’s mostly individual initiative within the systems that accounts for differences, or if organizational culture between different hospital organizations accounts for how patient-friendly versus patient-hostile hospital sites are. A lot of clinical trial insiders complain about the difficulty of patient recruitment, and, given how hard it is to get into a study after saying “Hey, I’d really like to be in this study,” I have a few ideas as to why.

If I were in charge of clinical trials, I’d be working hard to make patient intake easy—a subject I talk about in “Puzzles about oncology and clinical trials.” Those puzzles continue to puzzle. Among businesses that sell to consumer, there’s a rabid obsession with user interface and user experience (UI/UX), because getting those wrong can lead to outcomes that range from “make less money” to “go bankrupt.” In a lot of medical situations, there seems to be no conscious, deliberate effort at improving UI/UX or intake. And after a decade and a half of promises about health-record sharing via electronic medical records (EMRs), I still wind up sending a ton of PDFs to intake coordinators, who then, I assume, manually attach them to the local EMR. One PDL1V site, UC Davis, requires that all records be faxed to them. This is not a joke. The records they request run to 100+ pages. UC Davis, as the name implies, is part of the University of California system—as is UCSD. I’d imagine they’d be able to pull records from another UC hospital, but no. Fax or die. Faxing it is.

You may think that me describing the clinical-trial process is pointlessly, tediously boring, but I’m doing it most of all for other people in similar situations. Don’t give up! Persevere despite the struggle. You are not alone. The system should be fixable, and, though I personally can’t fix them, I can explain my experience and thus hopefully shed light on the process in a way that helps others.

Between late December and March, life had slowly slid into a new normal. Although I’m not physically well compared to where I was before the cancer recurrence, I had more energy than I did in that bleak period of surgical recovery and systemic chemotherapy. A low bar, but one I managed to shuffle over. I’ve managed to do a lot of writing, and to help Bess do a lot of writing. I’ve been emailing advice and guidance to other people with cancer who are navigating clinical trials. I’ve been trying to live a positive, meaningful life.

It feels like my Interregnum Is over, and I’m back to wondering If this Is It. I know, intellectually, that I may be able to survive the month-long washout period, and that the next trial drug may work. But I also know that the month-long washout period may be long enough to get bone or brain metastases. The next trial drug may not work. And, even if it does, after the PDL1V trial, there is no other highly promising trial that I’m aware of. There are some okay trials in phase 1a, but most 1a trials don’t really work. NT219 requires that participants have had no more than two systemic lines of therapy, and SGNTV has the same requirement. So doing PDL1V means I won’t be able to do the other two. I might have to move to New Jersey for a drug called RAPA-201.

There are a huge number of issues to track, and limited information. We’re seeking more information but often not getting it. Life is usually an incomplete-information game. It’s more statistics and less calculus. Sometimes, one makes life-or-death decisions based on incomplete information.

I recently read an interesting though flawed memoir called The Trading Game, by Gary Stevenson, and the narrator describes the eponymous game that helps get him a job as a currency trader:

The trading game was supposed to be a simulation of trading, but actually, it was just a numbers game.

It ran using a special deck of seventeen numbered cards: some higher, some lower. In case you ever want to play it yourself, the full deck of cards was a -10, a 20, and all the numbers 1 through 15. Each player is dealt their own card, which they could look at, and then another three cards are placed, face down, in the center of the table. The game works by players essentially making bets against each other on what will be the total numerical value of the eight cards in the game (each of five players has one card, plus the three in the middle).

Conceptually, you can think of it like this: you are all buying and selling some asset and the total value of that asset is the sum of the cards in the game. You only have certain information (your own card); more information (the cards in the middle) is revealed as the game goes on. If you have a high card, say the 15, or the 20, then that gives you inside information that the total will probably be quite high, so you want to make “buy” bets that it’s a high total. If you have a low card like the -10 you probably want to make “sell” bets that the total is low. If you get a middle card like a 6 or a 7, then I guess you’ll have to make something up.

The betting system Is mainly what made the game a “trading game,” Ie It was designed to mimic the way that traders make bets in the markets: “price-making” and “price-taking” using “two-way markets.”

I feel like I’m playing the clinical-trial game. Instead of numbers on cards, I know there’s a large pot of hidden efficacy data that I can’t access. It’s siloed in databases run by hospitals or drug companies. Occasionally, some of that data is released publicly, and it becomes common knowledge. Often, however, I don’t know whether a given clinical trial is -15, or 20, or, most commonly, somewhere in between. Petosemtamab was close to a 20—maybe a 15 or something. I’m trying to trade on what public data exists, and what I can glean from conversations with oncologists, to make the optimal decision.

The analogy is inexact, but I wonder what happens to the people who don’t fully realize the kind of “game” that’s being played with their lives. If their oncologist even brings up the option of clinical trials (few actively refer patients to studies), it’s probably to whatever happens to be available at the hospital where they practice, regardless of the quality of the drug.

And the FDA doesn’t care; the FDA’s goal is to make itself look good, or as not-bad as possible, regardless of the number of people who fill the invisible graveyard while waiting for potential treatments to fatal disease. People running the trials are at the mercy of the incentives set by the FDA within the system. Some individuals within the system are amazing, and that fact is part of the reason I’ve been telling people with head and neck cancer to establish care at UCSD if doing so is feasible and reasonable. My top-level feeling, though, remains what I wrote about in “Who cares about your healthcare? What’s commonly overlooked in the ‘health’ care system:” no one is going to care as much as you and your family.

If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care. As you can infer, I probably have a lot of flights in my future.

[1] Bess read this and said that radiologists look at the two longest vectors. But that leaves a lot of room for the third axis, doesn’t it?

[2] I kid: I assume radiologists are as social as any other sort of doctor, though I can’t be sure because I hardly ever interact with them.

[3] Although I was kidding about the antisocial thing, this part is serious.

[4] During the washout period, I’ll ideally also be “screened” for study eligibility—CTs, MRIs, PET scans, labs, palm reading, awaiting drug-company sponsor approval. Not having to go through the process of waiting for appointments to establish care at new cancer centers can shave a few weeks off the process.

Food and friends, part 2: Edible food-like substances and the need to swallow again

February 28, 2024 By Jake Seliger in Culture, Personal Tags: cancer, Essays, food, personal Leave a comment

Part 1 is here, although “Edible food-like substances and the need to swallow again” is meant to stand alone. Part III is here.

I went into the May 25 surgery that unexpectedly took my entire tongue weighing around 155 to 160 lbs. When I came to, I probably didn’t weigh much less than I had when the anesthesia hit, but I felt like the heft of my body had been replaced with the weight of all that had gone wrong, and I was what was left over. Insubstantial. Without appetite.[1] Although it’s a cliché that you feel dread in “the pit of your stomach,” I instead felt dread in my nasal cavity—a horrible nasal tube was anchored with a stitch into my right nostril. It snaked up my nose and down my esophagus, terminating in my stomach.[2] Tube feeds were how I “swallowed,” although I had no agency in the process: a nurse pressed a button on the machine and the machine pumped food, regardless of my feelings or sensations.

Any calories had to go in through that tube. To say I hated consuming calories via nasal tube is an understatement. If I’d had an “off, forever” switch available to me in those first days after surgery, I’d likely have flicked it. Instead, I had oxycodone and dilaudid, which weren’t as good as an “off” switch, but adequate doses did make me feel like I was nowhere. Like most medical treatments, though, oxycodone and dilaudid come with a cost: opioids are severely constipating, and taking them may have led to what was one of the most dangerous moments after surgery.

In the hospital, it felt like every 10 minutes something or other had to happen: medications, cleanings, probings, vitals. “Tube feeds” weren’t just unpleasant because of the uncomfortable tube— the feeds themselves were a source of both pain and nausea. The word “feed,” makes me sound like I went from being a man to some kind of farm animal or hamster or alien. Or may an alien hamster farm animal? Before the surgery I never once looked at Bess and said, “Hey, why don’t we sit down to feed,” or “Baby, let’s go out to feed.” And if I ever did, I was joking.

The tube feeds made me nauseous and gave me terrible reflux. Part of the problems no doubt came from the surgery trauma and all the drugs I was on. But the ingredients in the substance itself couldn’t have helped. I had two choices, or assignments, depending on who was in command of the tube feed situation on a given day: either Nutren® 2.0 (made by Nestle Health Science) or Boost® Balanced Nutritional Drinks. Calling “Boost” a “nutritional drink” is like calling a junkyard a “pristine Redwood forest.” Boost’s website lists the ingredients as “WATER, GLUCOSE SYRUP, SUGAR, MILK PROTEIN CONCENTRATE, CANOLA OIL, AND LESS THAN 2% OF COCOA. [. . .]” I don’t think humans are supposed to eat diets rich in glucose syrup (which is just another sugar), sugar (this is also a sugar), and canola oil (the writer and gadfly Gary Taubes wrote a persuasive book called The Case Against Sugar). Whatever the problems I was having with digestion, I don’t think those problems were aided by vitamin-infused liquid sugar solutions.

I was barely alive and unsure about which side of the life-death line I would wind up on, which was not an ideal position for investigating alternatives to Nutren® or Boost®. At some point, a few days after the surgery, interventional radiology installed a PEG tube, and that installation let doctors remove the nasal tube. Getting the nasal tube out was an improvement, although injecting Nutren® or Boost® via PEG tube wasn’t, as you’d imagine, a real satisfying eating experience. In the hospital, I got enough calories to not die, and I guess that was enough from a medical perspective, if not a human one.

The Mayo ENTs said I’d likely be able to swallow again one day, albeit by blending food. I didn’t believe them. I couldn’t imagine much of a future and drifted in a present defined by either miserable, excruciating pain and nausea, or by opioids that allowed me to feel like I didn’t exist. I got out of the hospital in early June, and food injections continued to be a massive struggle, in part because I didn’t get the right injection pump until two weeks after discharge. My digestion improved when a friend suggested I try “Liquid Hope,” a liquid food product made from actual foods. The ingredients include ones I actually ate before the surgery: “Filtered water, organic garbanzo beans, organic green peas, organic carrots, organic hydrolyzed pea protein.” Garbanzos, peas, and carrots are good for humans in the way “hydrolyzed palm oil” is not.

For someone who prides himself on cooking and likes to try lots of different foods, this period was hard, and made harder by the belief I wouldn’t eat for life. I didn’t get to swallow again until late July, when Mayo speech pathologist Jessica Gregor showed me that I could, despite my reluctance and fear of choking, and she lovingly bullied me (that is Bess’s phrase) into choking down a glass of melted, diluted ice cream. It was the first thing I’d tasted in two months. It was a revelation. By then the trache tube was out of my throat and the trache wound had healed. I wrote about those first swallows in “On being ready to die, and yet also now being able to swallow slurries—including ice cream:”

With Jessica, I swallowed some ice cream slurry: the Van Leeuwen’s honeycomb flavor. We melted it and blended it with some extra milk, to thin it. And, although I was intensely skeptical that this would result in a meaningful sensory experience, there are taste buds at the back of the throat and esophagus. So I could taste ice cream. Since that night I’ve tried lots of things. Anything acidic, like lentil-soup slurry with too much lemon, doesn’t work well yet. Anything salty, same problem. But savory foods work and so do sweet ones. There’s a fun bakery and wine shop in Tempe called Tracy Dempsey Originals that we’ve been going to. Tracy Dempsey makes spectacular ice cream flavors—particularly her cardamom with fig jam. It turns out I can eat things like cookies and brownies if they’re blended with milk or coffee.

Over many months of practice I’ve gotten pretty good at swallowing. Swallowing isn’t like it was before the surgery, but I can taste foods at the back of my throat and, to a lesser extent, in my cheeks. I’m much better at handling acid, salt, and spice than I was when I wrote “On being ready to die.”

One of the scarier moments hit in the first few days after I began swallowing again. I was trying to drink water, and some of it got caught in my airway—I don’t know how, exactly. Bess was home and heard me making some horrible noise like a fish on a boat. She ran over to help but didn’t know what to do, as there wasn’t much to do, and she justifiably feared worsening the choking problem. I think she pounded on my back as I alternated between trying to expel the water and take a breath. I couldn’t get a breath in. I don’t remember which happened first, or how, though I do remember thinking: “I’m about to die by drowning.” And I remember the desperate gasps as I began to get air again. I’d wrongly thought water would be easier than solids, but melted ice cream was, for a while, the only thing that required a mere struggle, as opposed to a titanic struggle.

I’d lost so much taste and texture sensation when I lost my tongue, just as I’d lost much of my life’s animating energy, along with one of my chief means of hanging out with friends and friends-to-be, but enough taste sensation remained for me to enjoy the ice cream. Although that enjoyment was mixed with the terror of drowning.

Part III will continue in a few days. If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care.

[1] Appetite for anything: food, sex, life, status—all the things that make us human and keep us going.

[2] Horrible, but probably better than dying.

The dead and dying at the gates of oncology clinical trials

January 29, 2024 By Jake Seliger in Culture, Essays, Personal Tags: cancer, clinical trials, Essays, oncology, personal 3 Comments

If you find this piece worthwhile, consider the Go Fund Me that’s funding ongoing care.

I was reading Tyler Cowen and Daniel Gross’s book Talent: How to Identify Energizers, Creatives, and Winners Around the World, and in it they write: “You can open doors for other people at relatively low cost (perhaps zero cost) to yourself just by making some options more vivid to them.… You embody something, and that something will stir some others into action” (237). That’s a lot of what Bess and I are doing when we write about clinical trials, where getting the wrong answer means death: thus, our extensive focus on it, and the healthcare system more broadly. We’re trying to open doors, especially for people who are sick or who don’t realize what their options are.

Right now, according to “The pharma industry from Paul Janssen to today: why drugs got harder to develop and what we can do about it,” apparently “Only 6% of cancer patients take part in clinical trials nationally in the US, for instance, and the number is generally lower in other countries and for other conditions.” A lot of cancer patients don’t need clinical trials and are healed by existing treatments, but, even granting that standard-of-care often works, 6% seems low—it may be low because of poor guidance combined with fatalism. If my experience is representative,[1] a lot of cancer patients aren’t getting adequate help understanding the system and finding a trial. Bess and I only succeeded in finding a clinical trial to keep me alive because of our own perseverance and obsessiveness; we were explicitly encouraged by multiple oncologists not to bother and to let me die. My primary oncologist at the Mayo Clinic Phoenix offered zero guidance, aid, or advice. I can’t tell how common this is, though feedback so far seems to indicate the answer might be “pretty common.” For a normal person without some of our traits, background, and resources, getting an optimal clinical trial would be far harder, if not impossible—and it was already hard for us. I’m still puzzled that more people with poor prognoses on standard-of-care treatments aren’t working to get the best clinical trials they can.

What’s the barrier? Mindset, and discouragement from oncologists, is probably one problem. A guy named Richard Chen, whose profile says he wrote two books on clinical trial recruitment, said: “First, FDA’s remit is not, and has never been, to get therapies to patients.” He also said: “Its primary mission first and foremost, is to prevent unsafe drugs from injuring patients.” If the FDA’s remit isn’t to get therapies to patients, that’s bad, and its remit should change. The second comment is pure, unintentional comedy. Right now, I’m a dead man walking. The FDA is preventing “unsafe” drugs from injuring me, so that I can be “injured”—which is to say, killed—by a recurrent/metastatic squamous cell carcinoma infestation. If I’m injured or killed by a drug, that’s not so different from my ultimate trajectory anyway, and the knowledge that can be created from my situation might accelerate treatments and save the next guy’s life.

Moreover, we already have an example of a medical area that works well with minimal FDA interference: surgery. Maxwell Tabarrok describes the situation in “Surgery Works Well Without The FDA: The best evidence against the FDA:”

Despite extreme information problems and a complete absence of federal oversight, surgery seems to work well. Compared to similar patients on the waiting list, 2.3 million life years were saved by organ transplants over 25 years. The WHO claims that “surgical interventions account for 13% of the world’s total disability-adjusted life years.” Coronary artery surgery extends lifespan by several years for $2300 a year. Cataract surgery and LASIK can massively improve quality of life for a few thousand dollars.

Regarding drugs, particularly drugs for people who are already effectively dead, like me, we should be moving closer to a surgical model.

I think Chen is a smart and well-meaning person. But he’s so bureaucratized, and he’s so imbibed the FDA’s line, that he doesn’t realize the Kafkaesque absurdity of telling me, a dying man who’s failed all standard therapies, that the FDA is protecting me from potentially unsafe drugs, so that I can safely die of cancer. If the FDA didn’t flex their paternalism quite so aggressively, terminal patients could at least consent to try something that might help them, which is better odds than trying nothing and waiting for a certain end. Look, if the FDA wants to have long trial periods for dubious drugs like those meant to lower cholesterol or whatever, fine. Once a person has a fatal diagnosis, however, that person is probably, like me, a lot more inclined to take a flyer on what’s available and see what happens. And we should be allowed to do that. We’re terminal, not without capacity. If the FDA’s remit is, ultimately, preventing patient injury, maybe they should ask themselves if they’re causing injury with their current approach?

Knowledge among patients and oncologists seems to be another barrier, according to “Why drugs got harder to develop:”

Many patients are willing to take part in clinical trials in principle, but awareness is poor. About 50% of the time when patients are invited to clinical trials they accept, but 90% are never invited to participate, mainly because most patients are not treated in settings that conduct trials. Patients are also not necessarily aware of or educated about the benefits of trials, and how they may enable them to access a high standard of care. Leading clinical research centres often have too many studies and not enough patients. When it comes to the trial itself, the site may be far from where the patient lives, requiring them to travel or even relocate for the duration of the trial — without adequate support for doing so.

Poor awareness is consistent with my experience—no one explicitly told me to seek clinical trials. Bess writes about the dearth of oncologists referring their patients to clinical trials in “Please be dying but not too quickly: part three” and I’ve written about this issue as well, but, as I mentioned above, if I’d followed my then-oncologist’s guidance, I’d have done some palliative chemo and then died. That doesn’t seem like an optimal outcome. If I die, Bess will be lonely. In spaces like oncology, I’d expect patients to be more like me—that is, highly motivated to attempt to not die. I don’t wholly understand what’s going on, which is why I titled my last essay on the subject “Puzzles about oncology and clinical trials.”

I guess (or infer from behavior) that most oncologists aren’t penalized or rewarded for helping their patients find and enter clinical trials. In the emergency room, a doctor who routinely misses heart attacks or strokes will find his or her license attacked and him or herself in a court room. In oncology, there’s apparently no real effort to consistently help patients who’ve exhausted standard treatments. It’s not, I guess, part of the professional elements of the profession, which I find surprising. Sure, many patients are likely elderly and too sick to pursue clinical trials, but a fair number must be like me: motivated and able to undertake somewhat arduous efforts to prevent or delay death.

One reason too few people participate may be logistical:

To get enough patients to fill up large trials companies need to conduct trials at multiple sites. The more sites involved in a trial, the greater the logistical complexities involved in coordinating that the protocol is executed appropriately across sites, the data is collected to a good standard, and the drug is distributed to all sites as needed. This all increases costs. More sites also increases variance in execution, and improper trial conduct can delay or even sink a development program. According to data from Tufts university, >80% of trials fail to recruit on time, actual enrolment times are typically around double the planned timelines, and ~50% of terminated trials result from recruitment failures. An estimated 11% of trial sites fail to recruit a single patient, and another 37% don’t reach their target enrollment criteria.

There are efforts to create “virtual” trial sites—in other words, to allow clinical trials to proceed at local sites that reach some minimum threshold of competence. To use myself as an example, if the petosemtamab trial I’m doing at UCSD included a real virtual site component, petosemtamab could be shipped to HonorHealth in Scottsdale or one of the Ironwood Cancer Centers in Chandler, and I could receive my infusions and monitoring locally, with the data reported to UCSD and/or Merus (the drug company). Although that would mean “more sites involved in a trial,” it also means less responsibility at each site. The “recruitment failures” issue is interesting in light of the fact that almost no trial sites seem to do basic, modern marketing.

I’m not hugely optimistic about fomenting real change. Real change is slow in a society like the United States, which has been characterized since the 1970s overwhelmingly by complacency, stasis, and status-quo bias. One sees that in our inability to build new housing, our inability to build new ships for the Navy, our refusal to accelerate subway development, our preference for interminable litigation over infrastructure, the Jones Act, the FDA, dishonest and tuition-seeking universities, and the innumerable other veto players who, like Richard Chen, are great at saying “no” and unable to say “yes.” I hope we can build O’Neill Habitats that will allow a re-opening of the frontier and a new space where the dreamers who are tired of hearing “no” can instead create a new polity where it’s possible to say “yes.” The United States is huge on safetyism instead of true safety—and human flourishing.[2] We can and should do better. I doubt we will, however, because the people who most need FDA reform are dead. They’re not writing. They’re not doing podcasts. They’re not agitating Congress.

Still, sometimes change happens, and the bureaucratic inertia is somehow overcome. For example, voucher and charter schools seem to continue to ascend, despite entrenched and intense monied union interests opposing them, and decades after their intellectual foundations were laid. Marijuana legalization seemed unlikely until it happened. Psychedelics look like they’re on the path to medical legalization, at the very least, and possible general legalization; based on my experiences, psychedelics are both safer and far more interesting than alcohol. SpaceX has revolutionized the space game, and I’d have incorrectly predicted failure. Tesla is the sole bulwark against state-affiliated and subsidized Chinese companies owning the entire electric car market. Who knows what’s possible? I don’t hope for this, but if someone in some senator or senior house member’s family gets cancer, and that senator or house member learns what I’ve learned, FDA reform might become a vital issue for that person. Few people I’ve seen online have defended the current system (there are some—just not a lot).

The fact that the current ossified, slow system has persisted as long as it has is an argument for it continuing. Good enough is good enough, right? Moreover, the way the press responds to events helps perpetuate stasis: if a drug has negative side effects, including potentially death, that gets plastered all over the news. Investigations are launched. Scapegoats are sought. If a drug works, and saves lives, the response is muted. The articles go unread. The beneficiaries are happy but don’t start campaigning for more and better medical treatment, faster. One person who dies from a drug outweighs one hundred who might be saved by another. It reminds me of all the press given to any kind of airline accident, even one without casualties, while 40,000 people a year die in car crashes, without most of them making headlines.

One person on LinkedIn said this about Bess’s clinical trial essay-guide:

An extraordinarily damning overview of the way things operate currently, that puts everything we complain about from within the industry into perspective. Thanks for sharing this Brad [Hightower—mentioned above] – as you say, a must read that underlines how we must all work together to improve things.

It might be a damning overview, but it also turns out that seemingly everyone working in or adjacent to clinical trials knows about the problems already. That includes everyone from the researchers themselves to the drug companies to the hospitals to the oncologists to the support staff. If a lot of people have known for a long time how bad the system is, and no one has managed to coordinate sufficiently to make substantial improvements, that implies that the problems will persist. Can Bess and I be the catalysts that finally galvanize some change? That’d be great, and yet I’m pessimistic. There’s a saying in investing: “The market can stay irrational longer than you can stay solvent.” Call this Seliger’s Law: “A broken system can stay broken for longer than people have the time, energy, and ability to try fixing it.”

Still, Bess and I would like to try to make the world a better place, to the extent we can, and within whatever limits our abilities and skills may impose, and trying to nudge the clinical trial system into a better equilibrium is part of our effort. It’s too late to save my tongue, but it may not be too late to save the tongues and lives of others. In an alternate world, petosemtamab, or a cancer vaccine, would’ve been approved and available in Oct. 2022. I’d have gotten surgery, and then petosemtamab, which is way less toxic than chemotherapy. Maybe that wouldn’t’ve saved my tongue—but maybe it would’ve. Oncologists are reluctant to use chemotherapy, but modern alternatives like petosemtamab should help people like me in the future.

Cancer vaccines exist, though trials are moving achingly slowly. A company called Transgene is testing a cancer vaccine called TG4050 on patients with initial head and neck cancer diagnoses—the same diagnosis I had in Oct. 2022. TG4050 is moving to a Phase 1b and 2 trial; according to the company, “The compelling initial Phase I data presented with NEC at ASCO 2023 showed that all evaluable patients treated with TG4050 monotherapy developed a specific immune response and remained disease-free.” I wish I’d remained disease-free; instead, I have no tongue and am likely to die soon.

Despite my pessimism, “Why drugs got harder to develop” says:

Yet, even though there are major forces pushing against drug developers, there is a sense that the industry is still underperforming, and that it could do more. One reason for optimism can be seen in the recent flattening of the slope of Eroom’s law following decades of declining productivity. It remains to be seen whether the recent uptick is a sustained turnaround or not. The pessimistic view is that it is illusory, a result of how drugmakers have side-stepped fundamental productivity issues by focusing on developing drugs for niche subpopulations with few or no options where regulators are willing to accept less evidence, it’s easier to improve on the standard of care, and payers have less power to push back on higher prices: rare disease and oncology in particular. It’s no coincidence that investment has flowed into areas where regulatory restrictions have been relaxed and accelerated approvals are commonplace: 27% of FDA drug approvals in 2022 were for oncology, the largest therapeutic area category, and 57% were for rare/orphan diseases.

That seems better than nothing. Maybe Congress and/or the FDA is responding to the Richard Chin logic I note above. The FDA has created systemic problems, and it can also create systemic solutions. For example, the FDA doesn’t really account for the time-value of money,[3] which is especially important in a high-interest-rate environment:

As a more general point, it would help if regulators could be more predictable and transparent in their decision making. In a survey of drug and device industry professionals, 68% said that the FDA’s unpredictability discouraged the development of new products. It can be hard to predict how regulators will react to a certain dataset in the context of high unmet need, so companies can be inclined to ‘submit for approval and pray’, even after receiving negative feedback on the data package from regulators during prior interactions.

“Hard to predict” means that many people stop pushing a drug before they start. Companies are competing for investable cash with all other companies; the more time-consuming (read: expensive) the FDA makes the process, the fewer drugs will even be attempted. “Why drugs are harder to develop” suggests the FDA be more accountable to patients:

A straightforward start to improve transparency across the industry would be for the FDA to disclose the formal ‘complete response letters’ (CRLs) issued when they reject a drug which contain the reasons for rejection. Making this information public would give future developers insight into the regulator’s thinking on a disease, with minimal downsides. How companies represent their CRLs to the broader market today is often misrepresentative of the actual reasons for rejection, potentially misleading patients as well as future investors and drug developers in the indication.

I’m not the only one thinking about reform; pretty much everyone in the industry is. To return to a point I raised at the beginning of this essay, reforms could also make clinical trials easier for patients to access. Bess and I spent thousands of dollars and countless hours learning how the clinical trial system works and then how to participate. Initially, no one comprehensively helped us on this journey; my original oncologist at the Mayo Clinic Phoenix was and likely still is sluggish. Mayo Phoenix has a great ENT department but appears to be poor in oncology, which is surprising for an organization with a reputation for cancer care. Bess and I had to learn what we know piecemeal, which is part of the reason we’re trying to describe comprehensively what we’ve learned and how other people’s experiences can be made better.

The best trial for head and neck cancers is petosemtamab, and that trial is being hosted at UCSD. Bess and I are lucky enough to have the resources necessary to get me there twice a month from Arizona for infusions, thanks in large part to the generosity of friends and strangers who’ve contributed to the Go Fund Me. I’ve been saying that being sick for an extended period of time has at least three components to it: health itself; financial well-being; and managing healthcare. Drop any one of the three and the other two are likely to fall too. Very few people can help my health or healthcare directly, but the contributors to the Go Fund Me have made the financial challenges easier.

What’d make things better for everyone, however, is reforms like virtual trial sites. The healthcare team at UCSD has been great, but being infused locally would negate the need to be away from home six days a month, the cost of flights, hotel, and the huge energy expenditure all that entails. The process of getting a clinical trial medication can and should be less expensive and arduous than it is. I can see why most people who might want to participate in the better clinical trials for their illness run out of money and energy to pursue those trials. Bess and I were ready to move anywhere. Fortunately, we’ve not had to move somewhere expensive and far from family and friends. We were ready to, though. We may still have to one day—and maybe, but hopefully not, soon.

Both of us also wish that there were greater transparency around which trials are doing well in terms of patient outcomes and which trials aren’t doing so well. We’ve learned via experience that right now, there’s no substitute for establishing care at a bunch of sites and listening to the oncologists there. Oncologists running trials will often tell you how things are going for trials that’ve been running for a while. If they’re enthusiastic about a trial, it’s often because they see a lot of patients doing well on it. They have observational data that outside docs and institutions have to wait months, maybe years, to get wind of.

Sometimes they’ll also steer patients away from trials that aren’t producing enough positive results. I’m grateful to the docs who’ve quietly advised us against floundering drugs. Some oncologist meetings produce non-public intel about which trials are most promising, provided enough patients have received the drug in question; the oncologists won’t know much if you’re like the first or fifth or tenth human to be dosed with a novel substance, but a lot of these trials have built up years of data. If a site has run through dozens or as many as 100+ patients, the oncologists will have a sense of whether it’s working, even if nothing “official” has been released.

This is one of innumerable tiny facts and practices about effectively participating in clinical trials that we’ve discovered. I’ve never read anyone else who’s put out things like this, just like I’ve never read anything remotely like Bess’s clinical trial guide-essay, “Please be dying, but not too quickly.” Somehow, a lot of this essential information isn’t making it into the larger information ecosystem. The lack of quality information has been driving my writing over the last five months, including my last essay, “On not being a radical medicine skeptic, and the dangers of doctor-by-Internet.” We collectively can and should be doing better. I’m trying to be part of the solution. In reading this, and passing it to others, you’re part of the solution, too.

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

See also Alex Tabarrok’s “Conditional Approval for Human Drugs,” in which he says “I think that the FDA’s excellent arguments for conditional approval apply to human drugs as well as to (other) animal drugs and even more so when we recognize that human beings have rights and interests in making their own choices.” And he also ends on a hopeful note: “Dare I say it, but could the FDA be lumbering in the right direction?”
Part III of Bess’s clinical-trial odyssey has recommendations for improvements.

[1] Which I hope it isn’t, and yet the emails I’ve been getting indicate that my experience is distressingly common.

[2] The book Where is My Flying Car? by J. Storrs Hall is good on this. We should have so many nuclear power plants that power is almost too cheap to meter, we should have O’Neill Habitats that re-open the political frontier in order to let the non-complacent gather and advance the human condition, and we should have progressed much further in curing cancer and making biology a variable rather than a constant. That we’re content to creep and crawl on the earth rather than soar into the heavens is an indictment of our whole society. Too many lawyers, too few makers.

[3] Bess asked what the time-value of money is. Briefly, it’s how much an investment or investor would lose or gain from alternatives. Take a simple example: you can invest a million dollars in a company running a clinical trial, or in a money-market fund paying 5% a year. If you invest in the money market fund, you wind up with $1,050,000 at the end of the year. If FDA delays cost you a year, you’ve effectively lost the $50,000—you have more like $950,000! Inflation matters in these calculations, too.

This is also why delays to housing construction are so evil.

Will things get better? Suicide and the possibility of waiting to find out

January 23, 2024 By Jake Seliger in Culture, Essays, Personal Tags: cancer, Culture, Essays, personal, suicide 5 Comments

If you find this piece worthwhile, consider the Go Fund Me that’s funding ongoing care.

Suicide is a one-way valve: once done, it can’t be undone. I’d known the May 25 surgery that took my tongue would be hard and have a long recovery period, but I didn’t understand what “hard” and “long” truly meant, and during that post-operative June and July, when the level of physical misery was not, for me, compatible with life—not long term—I told Bess about “the question.” But if I delayed, the choice could always be made later. Knowing the option for exit remained allowed me to keep living, or whatever that simulacrum of living was, to see how things played out, despite how bleak life was. Many burdens can be borne for a short time, provided that there’s legitimate hope for a brighter future. Maybe there was. Maybe there wasn’t. I wouldn’t know if I was dead.

Back then I’d look at the man in the mirror, bloated, hideous, covered with stitches and thought, though I knew the answer: who or what is that? I’d expected to lose half my tongue to cancer, but when I awoke from surgery, I discovered the whole thing gone, along with some important nerves in my neck. For more than a month, I wasn’t able to breathe comfortably. Mucus production dominated my life, apparently due in part to the loss of the cancerous nerves. The days I spent in the hospital after the surgery were among the darkest in my life, and all the darker because of a thought: What if it doesn’t get better than this? The question wasn’t rhetorical. I saw the answer whenever I looked into the void.

Though I knew the answer, I didn’t like it. Worse than what I saw in the mirror was what I felt: an inability to be comfortable, in any position, anywhere. Breathing hurt, and I felt like I was drowning all the time. It wasn’t possible to clear sufficient mucus from my airway or nasal passages to breathe. Waterboarding is a form of torture, and, while I hope never to experience it directly, the descriptions I’ve read of it resonate with what I felt after the surgery. I was dependent on machines to keep me relatively alive. One day I hope man and machine can merge in a beautiful symbiosis, but my partial merger with the machine world was not like that—yes, they kept me alive, but I was fighting them, and they were fighting me, rather than us working together towards some greater mechanical whole.

If anything kept me alive, it was Bess. Every moment hurt, but I saw how fiercely she clung to the idea that things might get better. She was so diligent about caring for my wounds, cleaning the surgical sites, and monitoring my progress; it had to be because she expected progress. She might’ve been subconsciously motivated because she’s a doctor and can’t ignore a medical task, or, alternately, she was deluded by love and false hope. But her own optimism helped me understand there was a chance things would get better, however much everything, moment by moment, hurt. Which was good, because things hurt. A lot. I breathed through a trache tube in my throat that was constantly clogging and suffocating me. Pushing bags of liquid food through my PEG tube using a pump was a relentless struggle. I barely had the energy to walk across the room. The level of absolute, continuous exhaustion is hard to convey to anyone who’s not been through something analgaous. With normal exhaustion, sleep is curative. I couldn’t even sleep well because I couldn’t breathe well.

The pain wasn’t solely physical; it was also the pain of trying to understand where I fit into the world and how to live; not just existentially but quite literally how to manage simple day-to-day tasks that were now impossible. When I got out of the hospital, I immediately faced a barrage of fucked-up bureaucracy: the hospital and medical suppliers kept calling me and wouldn’t talk to Bess without my verbal consent, which I couldn’t give, because I couldn’t speak. Insurance wanted to fight. We weren’t sent home with the right food pump. It took two weeks to get said pump. Most adults figure out how to exist in the sometimes-insufferably bureaucratic society we inhabit; I couldn’t do so, because I couldn’t speak, or think, or move. David Brooks just wrote an essay, “Death by a Thousand Papercuts,” that captures a little of what I felt:

[Administrators’] power is similar to what Annie Lowrey of The Atlantic has called the “time tax.” If you’ve ever fought a health care, corporate or university bureaucracy, you quickly realize you don’t have the time for it, so you give up. I don’t know about you, but my health insurer sometimes denies my family coverage for things that seem like obvious necessities, but I let it go unless it’s a major expense. I calculate that my time is more valuable.

My time wasn’t valuable[1] but I lacked the means to pay the time tax. I was already suffering so severely in the physical realm that I didn’t have the wherewithal to fight for the pump and the food and medications. Even now, I’m facing potential mystery bills generated by United Healthcare; the person at the Mayo Clinic who is supposed to interface with the specialty pharmacy says the specialty pharmacy won’t talk to her[2], and, while the specialty pharmacy hasn’t generated any bills directly to me yet, I sense that they’re coming. Maybe it sounds absurd to be talking of bureaucracy in an essay about suicide, but probably it makes sense to anyone whose entire life has ever been at the mercy of one[3]. Bureaucracy can be a form of exhaustion and misery. It eats at your resolve. It’s its own kind of slow death.

During the summer, I couldn’t see a way forward towards a better life, and I knew that if I couldn’t get to a better, more tolerable life, I wouldn’t want to live further. Bess worried horribly about me, though I did promise her that I wouldn’t leave without telling her first. She worked frantically to keep me here, and to make life as good as it could be, given the privations of the surgery and cancer. She did as well as anyone could. But the suffering persisted. I don’t know precisely where the line was between “tolerable” and “intolerable” except that I was on the wrong side immediately after the surgery. Probably each person has to decide for him or herself where the line is. I don’t generally favor suicide—I prefer hope to despair, life to death, success to failure—but I don’t consider it taboo or unthinkable, either. Life and human consciousness are in general good, and, as far as we can tell, rare in the universe. They should be fostered, though not at the expense of all other values and costs.

In the months after the surgery, I felt like I had no slack—no physical slack, no energetic slack, no intellectual slack. I hardly had the ability to do anything or to think anything. Commonplace tasks felt like climbing the Himalayas. And I was besieged by tasks: doctor appointments, wound care, antibiotics, food, managing the healthcare team and system. I didn’t have energy or attention for anything. Life’s pleasures, whether normal or small, weren’t available: sleep, rest, food, coffee, sex, showers. I was technically alive but felt like I shouldn’t be.

There’s a weird tendency for people to view others persisting despite suffering as if they’re watching the vapid inspiration videos infesting social media like so many varmints. They fantasize that suffering serves a purpose. It teaches us…something, beyond itself, I guess. Wisdom, or something. I think that’s true of some kinds of suffering, like completing a project at the limits of one’s abilities, or other activities that generate mental fortitude and knowledge. Other kinds of suffering, like medical suffering, seem more pointless. I’ve learned that medical suffering sucks, but I knew that going in. I don’t think I’m a better or wiser or more enriched person for having been through what I’ve been through; I’ve just been miserable. That kind of adversity isn’t worth the price of adversity.

I could construct a bogus story in which I’ve learned from the suffering of the last year, but I don’t think it’d be true. It’d just be a form of cope. Bess confirms that, for every person she sees who beatifically (and irrationally) convinces themselves that their suffering has a purpose, there are five more who are miserable and mean about the hand they’re dealt. She confirms I’m not miserable or mean,[4] but I am a realist. If I’ve learned anything, it’s what I already knew: technology is good; cancer is bad; using technology to defeat cancer and other forms of human immiseration is good. We should accelerate technological progress in the pursuit of improving human flourishing. In another world, a world with less FDA intransigence and blockage, I’d have gotten Transgene’s TG4050 cancer vaccine after my first surgery, and it would’ve prevented the recurrence that took my tongue. Fortunately, the FDA has been diligently protecting me from being harmed, and it has thus ensured that cancer will kill me. Thank you, FDA.

If suffering has done anything, it’s made me more willing to speak out for the importance of technological acceleration, and for the need to give people the option to take more risks and block fewer technologies. We can’t build AI to improve the human condition soon enough. Forty thousand people a year die in car crashes; if AI plus LIDAR leads to self-driving cars, great. MobileEye and Luminar are leaders in self-driving cars, but the other efforts to build out AI and, eventually, the machine god, shouldn’t be discounted.

I don’t know when I consciously realized that I might be doing well enough to ask myself more questions about how I might live as opposed to when I might choose to die—probably sometime in August or September. Improvements have been slow—so slow. I learned to swallow slurries again. For a long time, every swallow was a struggle. I choked so severely on water in late July or early August that I thought I might die. Bess witnessed it, and pounded on my back to attempt to help me, and said she found that episode terrifying, because the Heimlich maneuver isn’t efficacious against drowning.

As I became somewhat better able to breathe, and the number of medical appointments began to decline, I also planned for another set of privations in the form of chemotherapy. What happened on May 25 is called “salvage surgery.”[5] I guess the surgery salvaged my life, at the expense of my tongue, which had been replaced it with a flap of muscle from my thigh. But the flap felt like an inert, alien thing, that constantly alerted my brainstem to a foreign threat inside my own mouth. It was immobile and insensate and yet I felt it, constantly. Was I what had been salvaged? It sure didn’t feel like it.

Failure to eliminate head and neck cancer in the first go-round is extremely bad, though my surgeon, Dr. Hinni, got clean margins in May. The question became: should I do any chemotherapy in an attempt to eliminate any remaining cancer cells? No one gave us a clear answer, because one doesn’t exist: Bizarrely, no one had comprehensively studied the question. Almost all the oncologists Bess and I consulted with said they either didn’t know the answer, and most said that the choice was really 50/50. It seemed we had to “decide what we wanted,” which seemed like a great way to run a Montessori preschool, but a less great way to decide on life-altering cancer care. Oncologists are strangely loathe to provide real, data-driven recommendations. There’s a lot of misplaced hope and enthusiasm for debilitating therapies, while, at the same time, thinking outside the box seems to be viewed with unearned futility.

I looked at the odds of surviving a second recurrence—essentially zero—and decided to go for chemo. My first chemo infusion was scheduled for July 24, and on July 21 I got CT scans to see whether I could begin performing jaw exercises that might improve my mobility; those scans showed the recurrence and metastases. That horrible surgery had bought a mere two months. Chemo went from “maybe curative” to “palliative, and an attempt to buy time.” I was barely healed enough from surgery when the chemo began, and so the physical improvements were setback by chemo.

Yet even though the chemo was miserable, I’d gotten better enough to have pulled back from the brink. I was getting a little better at swallowing. I was able to breathe without constant, continual pain. The PEG tube that protruded from my stomach was a constant bother, but one that was manageable enough. Progress was just slow. Unbelievably slow. Every day, I pressed forward as best I could. I used the exercise bands. I walked a little farther. I tried to push in as much nutrition as possible. I adjusted medications to help me sleep. Most importantly, I spent time with Bess. The purpose of life is other people. For me, that’s presently instantiated by being with Bess, by being with friends and family, and by writing. The writing is an attempt to help others, especially the people who are facing their own cancers. Oncologists apparently aren’t, as a group, going to do enough to help people who need clinical trials, so I’m stepping into that gap.

There’s a common distinction between surviving and thriving. Many people who survive traumatic or horrifying events never thrive after. Esther Perel has spoken about the difference between Holocaust survivors who managed to thrive after, as her parents seemed to, versus those who didn’t, as two of my grandparents seemed not to.[6] I’ve been trying to thrive, as best as I can discern how, with the aid of Bess, and despite the challenges of the incurable disease that’s killing me, held at bay right now only by the clinical trial petosemtamab.

For now, not exiting was the right decision, thanks to the aid I received and am recreiving from many others around me. I’m trying to lead a generative, positive life with what time I have left, and writing is a key part of that effort. Few people understand how bad the FDA is, or the degree to which the FDA is retarding progress in oncology in particular, and consequently letting cancer patients die. Perhaps there are too few faces to associate with the statistics about cancer deaths, and so I’m attempting to associate a single person with the bureaucratic edifice that is the FDA, killing through its nominal mission to “protect.”

One day, maybe soon, may not, it will be time to enter the one-way portal. The preferred, antiseptic modern term is “death with dignity.” But the people around me and with me keep me alive, and show that we really do live for one another. The physical challenges are still great, but not as severe as they were last summer. I’m able to get up and engage in meaningful activity most days. I don’t want to be a burden—a burden on family, friends, or society, and by my own judgment I think myself not too great a burden for others. That line will likely be crossed in the next year, but it’s not been crossed yet. And the clinical trial I’m participating in—and the one after it, and, if that one is successful enough, the one after it—is generating the data necessary to make effective cancer drugs available to other people. My role is small—I’m not inventing the drug, I’m not manufacturing it, I’m not setting up the trials themselves—but it is a role, and it is one someone has to fulfill. Fulfilling it generates some meaning in my life, and meaning is an essential component of thriving. Maybe there will be other roles for me, before the end.

I’ll probably never be as effective as I was before the cancer, but I’ve been working, every day, at being more effective and less of a burden to the degree that I can achieve either. There’s plenty of physical pain in my life—as I write this, I have cuts on the pads of my fingers that won’t heal, I’m bleeding or barely not bleeding from my toenails, and my lower lip cycles between cracking and bleeding from those cracks. But the pain is bearable enough. I can breathe well enough. I’m able enough to write. So much has been taken, though enough remains for me to remain. I still believe what I wrote in “I know what happens to me after I die, but what about those left behind?”:

At some point, the suffering may be too much, and then I hope to exit by my own hand, gracefully, not having been wholly unmanned by disease. “Unmanned:” it’s an old-fashioned word, and one that appears in the appendices of The Lord of the Rings, when it is time for Aragorn to department the world. His wife Arwen pleads with Aragorn “to stay yet for a while” because she “was not yet weary of her days.” Aragorn asks her if she would have him “wait until I wither and fall from my high seat unmanned and witless.” I didn’t imagine that I might face the same question so soon, and yet it’s here, before me, and I hope to depart before the pain robs me of my mind and leaves me witless and suffering. Aragorn says that “I speak no comfort to you, for there is no comfort for such pain within the circles of the world.” And that I fear is true of Bess, too, that there will be no true comfort for her pain. Her parents will help her, our friends will help her, she will not be alone—and yet the pain at the moment of my own departure will remain.

Aragorn and by extension Tolkien understood death with dignity. For a lot of the summer, I felt unmanned and witless. Now I’m sufficiently manned and witted to be writing this, to be cooking, and to consider a future I probably won’t get, but I might. I don’t want to be caught off guard by success, like a teen boy whose efforts to get laid work when he thought they never would. The incremental improvements have added up, and suicide is an all-or-nothing proposition. The decision not to die last summer was the right one. The show goes on. Life goes on. For now, I am a part of it.

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

[1] In the monetary sense: my marginal product of labor then was $0/hour. Bess wants me to point out that my time is inherently valuable to me as a human being.

[2] The specialty pharmacy also told her that they won’t talk to us. “They don’t speak directly to customers.” When the bill comes, I guess I’ll just send it back with an explanation that if they won’t interface with me, I won’t interface with them. Something tells me that will change their policy.

[3] Or who has read Kafka.

[4] Some of the nurses on the post-surgery recovery floor told Bess I was nice. I was trying to do unto others as I’d have them do unto me, and I hope I succeeded.

[5] The term for the surgery after the first surgery to remove head and neck cancer, and associated adjuvant treatment like radiation, fails

[6] They died before I was born, so I have no ability to judge for myself.

Why don’t schools teach debugging, or, more fundamentally, fundamentals?

January 16, 2024 By Jake Seliger in Academia, Culture, Essays, Teaching Tags: Academia, education, Essays, personal, Teaching 8 Comments

If you find this piece worthwhile, consider the Go Fund Me that’s funding ongoing cancer care.

A story from Dan Luu, from back when he “TA’ed EE 202, a second year class on signals and systems at Purdue:”

When I suggested to the professor that he spend half an hour reviewing algebra for those students who never had the material covered cogently in high school, I was told in no uncertain terms that it would be a waste of time because some people just can’t hack it in engineering. I was told that I wouldn’t be so naive once the semester was done, because some people just can’t hack it in engineering.

This matches my experiences: when I was a first-year grad student in English,[1] my advisor was complaining about his students not knowing how to use commas, and I made a suggestion very similar to Luu’s: “Why not teach commas?” His reasoning was slightly different from “some people just can’t hack it in engineering,” in that he thought students should’ve learned comma usage in high school. I argued that, while he might be right in theory, if the students don’t know how to use commas, he ought to teach them how. He looked at me like I was a little dim and said “no.”

I thought and still think he’s wrong.

If a person doesn’t know fundamentals of a given field, and particularly if a larger group doesn’t, teach those fundamentals.[2] I’ve taught commas and semicolons to students almost every semester I’ve taught in college, and it’s neither time consuming nor hard. A lot of the students appreciate it and say no one has ever stopped to do so.

Usually I ask, when the first or second draft of their paper is due for peer editing, that students write down four major comma rules and a sample sentence showcasing each. I’m looking for something like: connecting two independent clauses (aka complete sentences) with a coordinating conjunction (like “and” or “or”), offsetting a dependent word, clause, or phase (“When John picked up the knife, …”), as a parenthetical (sometimes called “appositives” for reasons not obvious to me but probably having something to do with Latin), and lists. Students often know about lists (“John went to the store and bought mango, avocado, and shrimp”), but the other three elude them.

I don’t obsess with the way the rules are phrased and if the student has gotten the gist of the idea, that’s sufficient. They write for a few minutes, then I walk around and look at their answers and offer a bit of individual feedback. Ideally, I have some chocolate and give the winner or sometimes winners a treat. After, we go over the rules as a class. I repeat this three times, for each major paper. Students sometimes come up with funny example sentences. The goal is to rapidly learn and recall the material, then move on. There aren’t formal grades or punishments, but most students try in part because they know I’m coming around to read their answers.

We do semicolons, too—they’re used to conjoin related independent clauses without a coordinating conjunction, or to separate complex lists. I’ll use an example sentence of unrelated independent clauses like “I went to the grocery store; there is no god.”

I tell students that, once they know comma rules, they can break them, as I did in the previous paragraph. I don’t get into smaller, less important comma rules, which are covered by whatever book I assign students, like Write Right!.

Humanities classes almost never teach editing, either, which I find bizarre. I suspect that editing is to debugging as writing is to programming (or hardware design): essential. I usually teach editing at the sentence level, by collecting example sentences from student journals, then putting them on the board and asking students: “what would you do with this sentence, and why?” I walk around to read answers and offer brief feedback or tips. These are, to my mind, fundamental skills. Sentences I’ve used in the past include ones like this, regarding a chapter from Alain de Botton’s novel On Love: “Revealed in ‘Marxism,’ those who are satisfying a desire are not experiencing love rather they are using the concept to give themselves a purpose.” Or: “Contrast is something that most people find most intriguing.” These sentences are representative of the ones first- and second-year undergrads tend to produce at first.

I showed Bess an early version of this essay, and it turns out she had experiences similar to Luu’s, but at Arizona State University (ASU):

My O-chem professor was teaching us all something new, but he told me to quit when I didn’t just understand it immediately and was struggling. He had daily office hours, and I was determined to figure out the material, so I kept showing up. He wanted to appear helpful, but then acted resentful when I asked questions, “wasting his time” with topics from which he’d already moved on, and which I “should already understand”.

He suggested I drop the class, because “O-Chem is just too much for some people.” When I got the second-highest grade in the class two semesters in a row, he refused to write me a letter of recommendation because it had been so hard for me to initially grasp the material, despite the fact that I now thought fluently in it. My need for extra assistance to grasp the basics somehow overshadowed the fact that I became adept, and eventually offered tutoring for the course (where I hope I was kinder and more helpful to students than he was).

Regarding Bess’s organic chemistry story, I’m reminded of a section from David Epstein’s book Range: How Generalists Triumph in a Specialized World. In his chapter “Learning, Fast and Slow” Epstein writes that “for learning that is both durable (it sticks) and flexible (it can be applied broadly), fast and easy is precisely the problem” (85). Instead, it’s important to encounter “desirable difficulties,” or “obstacles that make learning more challenging, slower, and more frustrating in the short term, but better in the long term.” According to Epstein, students like Bess are often the ones who master the material and go on to be able to apply it. How many students has that professor foolishly discouraged? Has he ever read Range? Maybe he should.

Bess went on:

Dan’s story also reminds me of an attending doctor in my emergency medicine program; she judged residents on what they already knew and thought negatively of ones who, like me, asked a bunch of questions. But how else are you supposed to learn? This woman (I’m tempted to use a less-nice word) considered a good resident one who’d either already been taught the information during medical school, or, more likely, pretended to know it.

She saw the desire to learn and be taught—the point of a medical residency— as an inconvenience (hers) and a weakness (ours). Residency should be about gaining a firm foundation in an environment ostensibly about education, but turns out it’s really about cheap labor, posturing, and also some education where you can pick it up off the floor. When I see hospitals claiming that residency is about education, not work, I laugh. Everyone knows that argument is bullshit.

We can and should do a better job of teaching fundamentals, though I don’t see a lot of incentive to do so in formal settings. In most K – 12 public schools, after one to three years most teachers can’t effectively be fired, due to union rules, so the incentive to be good, let alone great, is weak. In universities, a lot of professors are, as I noted earlier, hired for research, not teaching. It’s possible that, as charter schools spread, we’ll see more experimentation and improvement at the ˚K –12 level. At the college and graduate school level, I’d love to see more efforts at instructional and institutional experimentation and diversity, but apart from the University of Austin, Minerva, the Thiel Fellowship, and a few other efforts, the teaching business is business-as-usual.

Moreover, there’s an important quirk of the college system: Congress and the Department of Education have outsourced the credentialing of colleges and universities to regional accreditation bodies. Harvard, for example, is accredited by “The New England Association of Schools and Colleges (NEASC).” But guess who makes up the regional accreditation bodies? Existing colleges and universities. How excited are existing colleges and universities to allow new competitors? Exactly. The term for this is “cartel.” This point is near top-of-mind because Marc Andreessen and Ben Horowitz emphasized it on their recent podcast regarding the crises of higher education. If you want a lot more, their podcast is good.

Unfortunately, my notions of what’s important in teaching don’t matter much any more because it’s unlikely I’ll ever teach again, given that I no longer have a tongue and am consequently difficult to understand. I really liked (and still like!) teaching, but doing it as an adjunct making $3 – $4k / class has been unwise for many years and is even more unwise given how short time is for me right now. Plus, the likelihood of me living out the year is not high.

In terms of trying to facilitate change and better practices, I also don’t know where, if at all, people teaching writing congregate online. Maybe they don’t congregate anywhere, so it’s hard to try and engage large numbers of instructors.

Tyler Cowen has a theory, expounded in various podcasts I’ve heard him on, that better teachers are really here to inspire students—which is true regarding both formal and informal education. Part of inspiration is, in my view, being able to rapidly traverse the knowledge space and figure out whatever the learner needs.

Until we perfect neural chips that can download the entirety of human knowledge to the fetal cortex while still in utero, no one springs from the womb knowing everything. In some areas you’ll always be a beginner. Competence, let alone mastery, starts with desire and basics.

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

Earlier reading: “Most people don’t read carefully or for comprehension,” another response to Dan Luu.

[1] Going to grad school in general is a bad idea; going in any humanities discipline is a horribly bad idea, but I did it, and am now a cautionary tale for having done it.

[2] Schools like Purdue also overwhelmingly select faculty on the basis of research and grantsmanship, not teaching, so it’s possible that the instructors don’t care at all. Not every researcher is a Feynman, to put it lightly.

On not being a radical medicine skeptic, and the dangers of doctor-by-Internet

January 11, 2024 By Jake Seliger in Culture, Essays, Personal Tags: cancer, Culture, Essays, medicine, personal 6 Comments

In part 1 I wrote about the struggles that come with complex healthcare problems, like the cancer that’s killing me, the efforts to treat it, and the numerous ancillary problems those treatments have caused. I lacked meaningful guidance on important topics like clinical trials or how to significantly decrease the incapacitating side effects of chemotherapy. I had to seek out other interventions that would significantly improve my quality of life, like a low-profile mic-key PEG tube. Instead of being guided by experts, I often had to crowd-source recommendations and double-check (and drive) treatment plans, or else so much would have fallen through the cracks. I’d likely be dead. My experiences should help guide others in similar situations, so they can better advocate. But I’m not a radical skeptic and, though I’d like to see improvements in healthcare and other institutions, I also don’t see fantastic alternatives at present levels of technology. If you find this piece worthwhile, consider the Go Fund Me that’s funding ongoing care.

What I’m suggesting isn’t the same as getting your medical degree from Dr. Google

Patients love to tell doctors what to do, and it drives doctors crazy. Online, and sometimes in the legacy media, you might’ve seen quotes from doctors complaining about know-it-all patients who attempt to incorrectly drive treatment. Demanding inadvisable treatment isn’t just bad for the doctor’s sanity; it’s bad for the patient’s health outcomes. Bess, to cite one example who happens to be sitting next to me as I write this, is barraged by ER patients demanding antibiotics for their viral illness or steroids for their chronically sore backs—even though these treatments won’t address the problem and may cause real harm—all because the patient “knows their body,” evidence-based medicine be damned. Many, if not most, people aren’t great at gathering and evaluating evidence, or reading, and even doctors don’t appear to be great at statistical literacy.

I’m sympathetic to doctors’ views regarding patient knowledge or lack thereof, especially when doctors are trying to protect patients from unnecessary medications with real and serious side effects, and yet, at the same time, I continue to be (stupidly, foolishly) surprised at all the things not being done by the doctors who’re supposed to be driving my care. The first time something negative happens can reasonably be a surprise; the eighth time should not. They’re the experts and I’m the amateur, so why am I outperforming them in important ways? If Bess and I don’t drive, there’s no one behind the wheel, and that’s bad. Beyond my individual case, there’s also a larger question: What happens to trust in doctors as a whole when so many individual doctors aren’t providing the guidance or care they should?

Martin Gurri wrote a now-famous and excellent book called The Revolt of the Public and the Crisis of Authority in the New Millennium. It’s about, among other things, the loss of confidence in institutions of all sorts, including doctors and medical institutions. If you’re trying to understand the present better, The Revolt of the Public is a great, essential read. Patients need to listen to their doctors, yes, but for healthcare to benefit patients, doctors also need to listen to their patients. I’m not supposed to be an expert in every aspect of healthcare, and yet, as described in Part I, Bess and I have done and caught a bunch of things that the people who’re supposed to catch and do those things haven’t. In Poor Charlie’s Almanack, Charlie Munger wrote that “If, in your thinking, you rely entirely on others—often through purchase of professional advice—whenever outside a small territory or your own, you will suffer much calamity. And it is not just difficulties in complex coordination that will do you in.”* While it’s true that relying entirely on others isn’t a great idea, we all have to rely on others to some extent, and I’ve had to rely heavily on what doctors, nurses, physicians assistants, and others tell me. It’s hard to know what I don’t know.

Doctors go to school for four years and residency for a minimum of three. So why have I, a writer, had to double check so much? Why have so many of the plans that have kept me alive revolved around suggestions that Bess and I have made to oncologists and other experts—plans and treatments that wouldn’t have otherwise been considered? Bess and I did almost all the work and all the learning about clinical trials to keep me alive. It’s sub-optimal for me to do the double-checking because I don’t know everything the doctors know, or what I don’t know. Bess is an ER doctor and so doesn’t know oncology well. Still, Bess would agree that it only takes one minute for a doctor to ask him or herself: “if I was in my patient’s position, is there anything I can do to simply and easily make their situation better?”

I’m not anti-doctor. This isn’t a screed about how doctors are dumb (they’re not, in the main). Although I’m not writing a screed, I am describing what I’ve faced and experienced in trying to not die, including many of the unflattering parts. After I die, I know Bess will be consumed by crushing existential loneliness, and I want to delay that day as long as possible. Delaying that day as long as possible means that Bess and I are constantly fighting to get the care that doctors haven’t been providing. Bess has been able to keep a close eye on most emergent medical matters, and she’s activated the doctor-network to beg for help from peers in Facebook medical groups. She’s banged down the digital doors of so many oncologists, trying to crowd-source a sense of whether the path we’re on makes sense (we appreciate the help, I want to emphasize: many of you have literally been lifesavers).

We’ve gotten some real medical oncology help, to be sure: a head and neck oncologist at Mayo Rochester named Dr. Kat Price has been hugely helpful in clinical trials, chemotherapy regimen questions, and other matters. Dr. Assuntina Sacco at UCSD understands the clinical trial landscape and is more knowledgeable than we are about what’s out there. Both have, I think, asked themselves what they would want in my situation. But they’ve been the exception, not the rule, which seems crazy to Bess and to me—I guess we live in a crazy upside-down world. By writing about what I’ve seen and experienced, I’m trying to help others, and to warn them of the many challenges Bess and I have faced and, based on experience, are likely to continue to face.

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