Monthly Archives: July 2024

More isn’t always better: death and over-treatment as a downside of agenticness

July 29, 2024 By in cancer, Essays, Personal Tags: , 31 Comments

i. Aren’t we clever?

Bess and I felt so very smart. In April, we congratulated ourselves for navigating the healthcare system to get two doses of spot radiation that, in conjunction with clinical trial drug PDL1V, likely shrunk, and perhaps temporarily eliminated, the squamous cell carcinoma tumors in my neck that have been strangling me to death for the last year. Between bad scans in March 2024 and entering the PDL1V trial on April 15, two new tumors erupted from the left side of my jaw. Their size made me doubt whether PDL1V would have enough time to work at all, and so we sought adjunct radiation in the hopes of buying more time. Moreover, some evidence shows that the chemo part of PDL1V may make tumors more susceptible to radiation.

Clinical trials prefer that patients get only the treatment offered by the trial. Still, many allow exceptions for things like spot radiation, in order to help patients improve their quality of life and live long enough to see whether the trial drug is working. So Bess and I coordinated between the Mayo Clinic-Phoenix, which, if I have a primary care site, is it, and START-Utah, where PDL1V was being offered, to get up to five doses of spot radiation on the most ominous appearing neck tumors. This is where having lung mets comes in handy: because there were non-neck markers of disease, and the study could measure those as well.

I got a radiation dose on April 20, and another on April 22, but the PDL1V and the radiation together made me so sick that I quit after the two radiation doses. Yet those two treatments were enough: we almost immediately saw liquefied tumor begin draining through a fistula in my skin. The bulky noose of my other, deeper tumors visibly shrank from where they’d been pressing outwards on my neck’s vital structures. It was an incredible reversal. My breathing improved. I could eat most blended foods by mouth, even slightly spicy ones. Bess and I took walks in the evening, anticipating that maybe I’d live long enough to meet our daughter when she arrives in October.

A month of unanticipated optimism culminated in Bess and I traveling to Berkeley for the Manifest conference. We walked miles a day, enjoyed the cooler weather, and met with other internet writing wonks. I met people with whom I’d been trading e-mails and DMs for years. I hoped I was introducing Bess to the weirdos and writers who are her people. In-person access to the world of generative ideas and arguments is slim in Arizona, but now she knows how to find her people remotely. The future seemed to be opening a crack.

If some is good, more must be better, right? I thought about whether radiation and PDL1V together might be able to eliminate the tumors in my neck, so we arranged my remaining sessions of spot radiation. We returned from Berkeley on June 10 and drove straight to Mayo. Maybe I’d get two or three more doses of radiation, another few rounds of PDL1V to really put the screws to the leftover cancer cells, and then I’d enter a future of maintenance immunotherapy. It felt as if we’d not only found, but forged, the secret key that would open the door to the rest of our lives together.

It was my last physically functional day.

Continue reading →

Links: No one wants to talk about death, deep takes on the human condition, and more!

July 16, 2024 By in Links Tags: 2 Comments

* “The Silence Doctors Are Keeping About Millennials’ Death.” Germane to me for obvious reasons; our culture denies both death and grief and seems not able to incorporate either, particularly when death is premature. My own end feels so close, particularly because my days, such as they are, are filled with pain and exhaustion.

* “How can we get the world to talk about factory farming?” We probably can’t, until we can replace conventional meat with lab-grown meat. Then we’ll spend a lot of time about how bad people were to animals in the old days. Also, “A Hundred Years of Mocking Vegetarians: For a rare lifestyle choice, vegetarianism tends to drive people pretty bonkers.” Vegetarians are basically morally correct, and that makes the rest of us uncomfortable, so we lash out.

* “Immunotherapy Is Transforming Cancer Treatment and Oncology.”

* “Human history in the very long run.” I’m sad that I only get to see half the slice of human history I ought to see.

* Neal Stephenson’s writing process.

* “What working in a New York City restaurant was like circa 2000” (NY’er, $). Early Bourdain, before TV made him into something different.

* “Vibecamp & Porcfest: An Ethnography of The Internet’s Edge.” Offensive at times.

* Russia is losing a lot, hard, in Ukraine. Plus, “Leaks reveal how Russia’s foreign intelligence agency runs disinformation campaigns in the West.”

* How to Build High-Speed Rail in America.

* On James Joyce.

* London needs 20 million+ people.

* “Immutep Reports Positive Results in First Line Head and Neck Squamous Cell Carcinoma Patients with Negative PD-L1 Expression.” These results are amazing: PD-L1 expression of greater than 1 is advised and perhaps necessary for Keytruda to have some chance of working. Mine was 5 in one test and 20 in another, and I failed Keytruda (or rather it failed me). These are really the kinds of results that, for a fatal diagnosis like head and neck cancer. “Efti” is the name of the drug.

* Tesla continues to become a partisan brand, which is likely to hurt it in the both the short and long term.

* More on why Rome missed an Industrial Revolution.

* “Writing the first draft of financial history with Byrne Hobart.” Hobart and patio11 together!

* Restricting housing supply is a bad idea.

* “Puzzles about oncology and clinical trials.” Me from 2023, still sadly relevant.

Links: Slowness as a problem, kinds of conversations, curing cancer, and more!

July 14, 2024 By in Links Tags: 3 Comments

* “Pentagon ‘alarmingly slow’ at fielding new weapons.” China seems not to suffer this problem. Perhaps, given what’s happening with Taiwan, we should pay more attention. In other “China moves fast” news: “China State Shipbuilding Corporation is the world’s largest shipbuilder. It builds vessels for the People’s Liberation Army Navy and increasingly sophisticated dual-use commercial ships.” And the U.S. response so far is to shrug, it seems.

* “Not Everyone Needs to Go to Therapy: There be too much ‘mental-health’ awareness.” It turns out that if you tell people they’re robust, they’ll often turn out to be robust. If you tell people they’re fragile enough, they’ll start to believe that.

* A “blitz primary” seems like a good idea, compared to alternatives.

* “Are You a Jerk, or a Liar? On talking past each other.” On the gap between truth-seeking versus community-building communication styles. Ideally one figures out what kind of conversation one is in. Probably there are some sex differences in default style, and when I was younger I thought truth-seeking and information-exchanging were the purposes of communication. It took too much life experience to demonstrate that those beliefs were wrong.

“Are You a Jerk, or a Liar?” goes well with “The quality of your life is the quality of the people you get to know: Illuminating the David Brooks way.”

* In praise of potatoes (and an archive link).

* China is harassing Filipino vessels but not Vietnamese vessels—why that might be.

* The national debt is going unsustainably up, and that’s only now making it into the discourse.

* “California has surrendered its streets to assholes.” In general government needs to balance majority rule with minority rights, and when “minority ‘rights'” impede the ability of a city or society to function at all, that’s a problem.

* Metascience reforms at the NIH.

* “Drone Adoption Favors Quantity Over Quality In Warfare: Development of drones both large and small has outpaced institutional adoption across militaries. Battlefield successes will pressure an update to a deadlier kind of warfare.” The U.S., Europe, and Japan should ban DJI and build a drone industry. Better late than never.

* Lessons from a 37-year old.

* “China’s superrich are eyeing the exit.”

* “Don’t Sleep, There Are Snakes.” On the Pirahã people and language; I downloaded the book, although I’m not convinced I’ll live long enough to read it.

* On the history and maybe future of nuclear power.

* “Traffic engineers build roads that invite crashes because they rely on outdated research and faulty data.”

* “Why haven’t biologists cured cancer?”

* “How we should update our views on immigration.” On Marginal Revolution, not the usual, and I’m struck by how few people can think over decades or centuries about this issue. In the United States, almost all of us are in some sense the descendants of immigrants.

The two-crisis update

July 10, 2024 By in cancer Tags: 3 Comments

Five days ago I wrote about two simultaneous crises: one from swallowing and breathing poorly, and the second from PDL1V no longer holding back the tumors. Despite those beautiful scans in May showing extensive tumor-size reduction, the most recent scans show “Continued neoplastic disease progression throughout the neck as described. Of note tumor results in significant narrowing of the supraglottic airway.”

Sounds bad, is bad.

The installation of a new PEG tube means I can inject food without having to worry so much about how poorly I swallow. The new PEG tube feels like defeat in many ways, but my weight is hovering around 125 lbs and no longer falling hard. I also wound up staying inpatient after the procedures far longer than I should have, which cost weight and muscle mass. I’ve also been ravaged by saliva and mucus production again, which are almost as crazy-making as they were last summer. Still, I’m better able to swallow now than I was then, and the PEG tube means I’m less likely to starve death in the short term.

Secondarily, I wasn’t sure whether I’d have the strength to start a new clinical trial outside the Phoenix area. One challenge Bess I have faced since starting to pursue clinical trials, though, is that Arizona is pretty much a dead zone for the better head and neck cancer clinical trials. There are some at HonorHealth Research in Scottsdale (and the people who work there have, like almost everyone in clinical trials we’ve encountered, been helpful), but their most promising trials were “A Basket Study of Customized Autologous TCR-T Cell Therapies” from a company called TScan and “WTX-330” from Werewolf Therapeutics—and neither have slots available. The TScan trial may work, but, to paraphrase one oncologist we talked to, “We’ve been trying to get customized T-Cell therapies to work in solid tumors for a long time and keep failing.” Eventually someone is likely to succeed, but is this the moment, in a field littered with past failures?

As of right now (and highly subject to change), there’s a slot for Beigene’s BGB-A3055 in Dallas, Texas, and multiple sources report seeing some success with BGB-A3055 in head and neck cancer patients. Given how resistant head and neck cancers are, even “some success” is uncommon and attractive. Even a few days ago, I didn’t think I’d have the strength to fly for a new treatment, but dosing would start in early August, and by then I hope to be physically capable.

In early April, before starting PDL1V treatment, I was teetering on the edge of terminating treatment and exiting. Despite how rough early treatment turned out to be, continuing was the right decision. Once foreclosed, treatment options will not readily open again, and my tumors are so aggressive that “too late for real treatment” will become reality rapidly. If the exhaustion becomes too great, exit is always available, in a drawer, quietly lying in a pill bottle.

The story for now goes on; things have stabilized some, for now. Eating and sleeping might improve. If the mucus improves, I’ll probably be able to breathe and thus sleep more easily. Being able to think and write again would be nice.

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

Links: Good-tasting berries, other biology news, being the future you want to lead, and more!

July 6, 2024 By in Links Tags: Leave a comment

* “Why America’s Berries Have Never Tasted So Good: Driscoll’s had to figure out how to breed, produce and sell its most flavorful strawberries and raspberries. Now the strategy is starting to bear fruit” (wsj, $). Good news is underrated and seemingly hardly ever goes viral. I think that even though I’m very sick and for me individually pessimism is warranted.

* “A Revolution in Biology: How developmental biology might contain the secrets to life, intelligence, and immortality.” On Michael Levin’s ideas regarding how “the bioelectric network of the organism” may be as important as its genes. Not something I’d even heard of.

* An effort to clone 2011-era OKCupid. Not personally useful to me, but everyone complains about online photo-based swipe dating while hardly anyone does anything about it. This is an attempt at doing something.

* “What Have We Liberals Done to the West Coast?” I’d argue the northeast, too. And this is essential: “Why put liberals in charge nationally when the places where they have greatest control are plagued by homelessness, crime and dysfunction?” When Bess I lived in New York City, taxes were absurd, and yet no one said: “Well, the taxes are high but the public schools are great.” Instead, the money just seemed to…disappear. The vast majority of the subway was constructed before 1929.

* “Why California Is Swinging Right on Crime.” This article blames viral videos of brazen criminality. I think crime is like inflation and any number of other things: when it’s low, people forget it exists.

* Viagra improves brain blood flow and could help to prevent dementia.

* “Harold Bloom in Silicon Valley.” The future of Bloom and the canon isn’t in academia, so if it is somewhere, that’s presumably good?

* “The Growing Scientific Case for Using Ozempic and other GLP-1s to Treat Opioid, Alcohol, and Nicotine Addiction.” Given how poorly existing opioid and alcohol treatments work, GLP-1s are one of these “would be hard to be worse than the status quo” efforts.

* “The Overlooked (But Real) Possibility of a Big Democratic Win.” “Overlooked?” More likely just a low probability, maybe nice if it happens but not something to be counted on.

* “OpenAI Expands Healthcare Push With Color Health’s Cancer Copilot: Color Health has developed an AI assistant using OpenAI’s GPT-4o model to help doctors screen and treat cancer patients.” (wsj, $; archive). Sounds useful. Healthcare is still a bespoke, artisanal process, which means it’s both expensive and prone to error. Tools to help doctors are much needed.

In addition, here is Color’s blog post on the tool.

* “Even Doctors Like Me Are Falling Into This Medical Bill Trap.” The trap is:

The radiology charge from NorthShore University HealthSystem for the ankle and wrist X-rays was $1,168, a price that seemed way out of range for something that usually costs around $100 for each X-ray. When I examined the bill more closely, I saw that the radiology portion came not from the urgent care center but from a hospital, so we were billed for hospital-based X-rays. When I inquired about the bill, I was told that the center was hospital-affiliated and as such, is allowed to charge hospital prices.

It turns out that I’d stumbled into a lucrative corner of the health care market called hospital outpatient departments, or HOPDs.

Why do $100 X-rays cost $1,000+ at hospitals?

* Deterring a Taiwan invasion. China’s CCP can choose not to invade, and by not invading it can create conditions for scarcely imaginable human flourishing in the coming decades.

* “What if I told you there was a way to make cheap, carbon-neutral, pipeline-grade natural gas from just sunlight and air?.” On Terraform Industries. Which is trying to create human flourishing.

* The rise of the abundance faction.

* Argument against Lambda School, which is now called BloomTech.

* “U.S. Senate passes bill to support advanced nuclear energy deployment.” A step—though just one step—in the right direction.

* “Israel’s War of Regime Change Is Repeating America’s Mistakes.”

Very sick, and two crises hit at once

July 5, 2024 By in cancer, Personal Tags: , 5 Comments

I’ve been silent because I’ve been so very sick: swallowing has gotten much harder, and aspiration of food or liquid much more common, to the point that on July 1 I got a new PEG tube put in. Given how much removing the previous tube felt like a triumph, the new installation, although it’s keeping me alive, hurts. Literally and figuratively. Other physical problems I might write more about later are bedeviling me too—to the point that I wonder how much time I have left.

Being physically sick is one crisis; the second is that recent scans show that Seagen’s PDL1V is not holding back the tumors any more. I have to either switch trials, which I’m not sure I have the energy to do, or accept the end. Bess and I are working on a possible trial switch. But I’m swamped by headaches and fatigue. I don’t wake up properly. Foggy-headedness never abates. It may be that I’ve written my last essay (Bess saw this over my shoulder and she says she thinks I’ve not, but she’s an optimist about my longevity and writing abilities). I finished “Uncomfortable truth: How close is ‘positivity culture’ to delusion and denial?” a month ago. I meant to turn the last year’s writing into a memoir, like I’ve meant to do many other things, but cancer treatment is a more-than-full-time job, and now physical problems are knocking off a bunch of IQ points. I don’t know how many watts the brain typically consumes, but I feel like I need more, and the energetic processes that normally sustain and propel me are dysregulated.

Another recovery for a period of time is possible. If I don’t get there, thanks for reading. I still don’t know how to say goodbye, except by example.

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