The best treatment candidate for keeping me alive that I’m aware of is Moderna’s mRNA-4157 personalized cancer vaccine: in very early data from 2020, a 10-person dosing study found that the treatment “shrank tumors in five patients with head and neck cancer (50%), eliminating the tumors in two of those patients.” By recurrent / metastatic head and neck squamous cell carcinoma (R / M HNSCC) standards, that’s spectacular, so I perked up on Monday when Moderna announced phased 1b trial results showing that, of 22 patients who were dosed, two-thirds saw at least some “disease control” (meaning that their tumors stayed about the same size or shrank), and two saw their tumors disappear altogether. Pretty much everyone who has R / M HNSCC dies, and R / M HNSCC doesn’t readily respond to treatment, so anything with effectiveness like this is important.
Still, this is not so great: “About 27% of those receiving the vaccine showed an overall response rate, or ORR, with 3.4 months of progression-free survival, or PFS, and 24.6 months of overall survival, or OS.” Having only three and a half extra months without tumor progression is good, but not something like, say, three years. And surviving 24.6 months is nice—the R / M HNSCC median lifespan is just twelve months after diagnosis—but could, again, be longer. Moreover, on a personal level, if I’m going to survive I need access as soon as possible, and, at least as of January, one oncologist who works closely with Moderna told me she’s not aware of any phase 2 trial planned for 2024. That was three months ago, so things might’ve changed since.
I also note this, from the poster presentation: “Part C of this study enrolled patients ¬18 years old with checkpoint inhibitor (CPI)-naive, recurrent / metastatic HPV- HNSCC.” “CPI-naïve” means patients who haven’t receive pembrolizumab (Keytruda), which I have. If the phase 2 trial also requires that I be CPI-naïve, I’ll be out of luck. While phase 2 drugs can sometimes be petitioned for compassionate use if a terminal patient doesn’t qualify for a trial, it’s less likely that a personalized, tumor-specific treatment that requires more intensive preparation than, say, mailing an IV bag of a batch-produced drug, will be acquirable.
There’s another ominous phrase in the presentation, too: “Randomized assessment of the mRNA-4157 + pembrolizumab treatment effect in the advanced disease setting may be warranted.” So there will probably be a placebo group that gets only pembro, which I’ve already failed.
I don’t understand why the results so far aren’t enough for accelerated FDA approval, given the grim prognosis for R / M HNSCC, the limited treatments available, and the safety of mRNA-4157. It could be that Moderna doesn’t have the capacity to mass produce mRNA vaccines yet—the company is building a factory in Massachusetts that won’t come online until 2025—though that article also notes that “In 2018, the company opened a $110 million, 200,000-square-foot mRNA plant in Norwood.” Part of the approval process could I guess be proving not only efficacy, but the ability to mass-produce the vaccine; so Moderna won’t file paperwork for approval until the facility is running, which means that patients like myself, who so desperately need better treatment options now, will likely not be running at all by then, having run out of time.
Right now I’m about to begin a clinical trial of Seagen’s PDL1V antibody drug conjugate, which is good, though it’s unclear whether I’ll get dosed soon enough for PDL1V to work well enough to stop the tumors in my neck from breaching critical structures. Knowing what I know now, I probably should’ve gotten chemo immediately upon getting the tumor-growth news on March 13. But I didn’t for somewhat complex reasons I’ll explain in the next essay—primarily because PDL1V, like many clinical trials, has an arbitrary-seeming limit on the number of “systemic therapies” a patient can have undergone. Cruelly, the clinicaltrials.gov page for PDL1V doesn’t even appear to list a lines-of-therapy limitation, which means patients like me have to call sites to eventually get the news. That should be publicly stated, so as not to waste everyone’s time. But “wasting time” is normal, though maddening, in clinical trials. Ultimately, the time that matters to the sponsoring drug companies is not the patient’s, but the persnickety FDA’s.
Overall, we should be working to have drugs like mRNA-4157 get much, much faster approval, rather than leaving people dead and dying at the gates of oncology clinical trials. Particularly frustrating is the unavailability of mRNA-4157 when considered with the other highly promising, low-side-effect, unavailable drugs in the pipeline: petosemtamab / MCLA-158 (which I just failed), Purple Biotech’s NT219 small molecule, the Seagen (now Pfizer) ADCs like PDL1V.
The real benefit is likely to come by combining therapies with differing mechanisms of action. Getting mRNA-4157 or petosemtamab or PDL1v as monotherapies or duotherapies is nice, but R / M HNSCC has time to adapt to and defeat treatment. Using multiple drugs at once might make a larger number of “complete responses”—cures—conceivable. Instead, playing whack-a-mole with cancer by trying a new drug every time an old drug pressures the cancer to mutate, creates a recursive loop until there are no more drugs to try, or the next drug doesn’t work. It’s possible, though unlikely, that some unforeseen interaction among treatments will prove fatal, but so what? R / M HNSCC is already fatal. I should have the right to try, without the FDA blocking me and thousands of other dying patients. We need faster treatments, not more trials that let the dying languish.
In other HNSCC news, Transgene is moving its personalized vaccine to a phase 2 trial. That vaccine targeted at patients who have an initial surgery and then want to prevent recurrence; in the phase 1 trial, patients “were randomized to one of two treatment arms: one in which patients received repeated injections of the personalized vaccine as an additional adjuvant therapy and another in which they did not receive any additional adjuvant therapy.” No patients who received the vaccine relapsed; three of those who didn’t, did. “Roughly 40 percent of head and neck cancer patients are expected to experience cancer recurrence within two years of surgery and adjuvant therapy, according to Transgene.” If that TG4050 vaccine had been available in October 2022, when I had my initial surgery, I’d probably still have a tongue, be able to work, and look forward to spending years if not decades with Bess. Instead, every day is a fight and every month I’m alive a surprise. The technology exists but we’re slow-walking it to patients, which is insane.
This recent essay by Bess describes more about the FDA’s failures to consider real cost-benefit analyses, including the cost of delay, in approval decisions. The FDA is letting people like me die, which I find frustrating, as does my family.
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?
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.
Cooking used to play a huge role in my life, and then I lost my entire tongue to cancer. For months, every calorie had to be injected directly into my stomach through a PEG tube and, as you’d imagine, that was not a satisfying way to live. Maybe one day human metabolic processes will be fulfilled through expeditious, non-food means, but it seems to me that we’re far from that day, and until then we have to rely on food. A huge part of human culture is built on and around food. Not being able to eat is painful for the obvious reasons, and for subtler ones, like being excluded from the huge part of human culture that I’d once prided myself on understanding and navigating.
In July 2023 I swallowed again for the first time, and found that the taste buds in my cheeks, hard palate, and esophagus still work, which is a lot better than not being able to taste at all, but still a lot worse than having a tongue. Over time I’ve gotten better at swallowing: two months of nothing by mouth, combined with surgical trauma, took far longer than two months to remedy. Every swallow demanded great concentration: to mess up through inattention meant choking and surviving or, possibly, choking and dying. As children we learn to eat and swallow, and by middle childhood doing so is automatic. I had to re-learn so much: walking, talking, eating, swallowing. I read the header of this section, “food by mouth,” and realize it sounds redundant: isn’t all food taken by mouth? But no, it turns out, food for people with PEG tubes happens differently.
I didn’t have to re-learn cooking, although I can’t easily taste test. Cooking has become an exercise in trying to throw and catch a ball with one eye closed—I may bobble the ball at times, but I’m familiar with the physics, and one eye enables me to try, anyway. One of my earliest useful acts happened in June 2023, probably too soon after I got home from the hospital. I was waking up every morning between 5 and 6 a.m., because mucus attacks prevented me from sleeping properly and consistently. In those early hours, Bess was usually still in some exhausted, unrestful, but essentially unconscious, state, so I couldn’t interact with her. My brain was still beset by recovery fog. However, I could by then walk short distances, and a Sprouts grocery store is about five minutes from our apartment. Being located next to a grocery store was a matter of luck rather than intent.[1] One of many follies of “urban planning” in the United States is that we prioritize parking lots over people, and parking lots over convenience. Most people have to drive a couple thousand pounds of metal to pick up a few pounds of groceries. One of the great virtues of our apartment is that we’re so close to a grocery store. We ought to stop forcibly segregating residential and commercial uses, so that many more people can live on top of, or near, grocery stores, bars, and so forth. The not-in-my-backyard (NIMBY) crowd has wildly and sadly won since the ‘70s, making the way Bess and I have been able to live—within walking distance of groceries—a rare privilege instead of an invisible commonplace. The polio vaccine makes the disease unnoticed by modern people; if we gave people the freedom to build what they want on the land they own, living within an easy walk of a grocery store might be similarly unremarkable. Instead, we raise GDP while lowering quality of life by demanding that most of us drive everywhere, all the time. No wonder our healthcare expenditures are insane: we make illegal or impractical a common, easy form of healthy action.
Given my physical abilities in June, Sprouts was just within walking distance, so that I could consider a recipe, note the ingredients, get over there, and get home before Bess woke up. I’d start the meal when she got up, to avoid waking her due to the noise from chopping or clanging pans. Hours later, the slow cooking would finish and Bess would eat, while I would inject food. Much later, she told me that she barely ate between May 25 and whenever I began cooking again: she felt that me making food was a signal for her to start consuming things again. At some point her parents gave us a Vitamix, and I used it to thoroughly blend the food I made into something with the consistency of Liquid Hope, and then injecting it into my PEG tube. Liquid Hope is good, but a diet consisting entirely of it can’t be ideal. I tried to run it through the Infinity Pump, which used a pressure mechanism to push a bag of Liquid Hope (the Liquid Hope in turn hung in a plastic 500cc bag on an IV pole) through a long piece of tubing attached to my PEG tube. The pump was forever getting clogged, getting clogged and beeping, getting clogged and beeping and exploding Liquid Hope everywhere, and generally driving my life and patience past frustration and into a ditch.
Everyone has a philosophy of food, whether articulated or implicit, whether “I mostly eat microwaved pizza and instant noodles” or “I’ve never had Kazakh food: let’s try it.” Most of us probably don’t think that much about why we eat what we eat, and change comes from the relatively small, but vocal and experimental, group of people who do. Most often we do whatever’s most convenient, which is to say whatever most people around us are doing. To deliberately change is to incur high costs in terms of time and attention—time and attention that some people don’t want to devote to food, despite phrases like “you are what you eat” or the importance of food to health. Health, as I know too well, is one of these things that, once gone, is sometimes impossible to recapture, like a cat that gets out the door and darts into the bushes, destined for a coyote’s belly. I’ve never been a complete maniac for the absolute healthiest food, or healthy-coded food (I used to enjoy gluten, although it doesn’t blend well, so I’m not non-consensually bread-free), but a lot of healthy food tastes good, too, particularly if someone isn’t completely in thrall to the supercharged, overwhelming tastes of modern processed foods.
Before the cancer, and even now that I can swallow again, I’ve tried to eat, and make, a variety of things. Different foods are fun: all of us need variety in our lives, along numerous dimensions. Some of us need more variety than others, depending on the dimension in question (I have run into people who eat within a tiny range—often just simple carbs like pasta or pizza). Beyond being fun, I also connect variety in foods with Michael Pollan’s books and articles. In one famous article, for example, he says “We also eat foods in combinations and in orders that can affect how they’re absorbed.” Plus:
“The trace of limestone in the corn tortilla unlocks essential amino acids in the corn that would otherwise remain unavailable. Some of those compounds in that sprig of thyme may well affect my digestion of the dish I add it to, helping to break down one compound or possibly stimulate production of an enzyme to detoxify another. We have barely begun to understand the relationships among foods in a cuisine.”
One of the (many) problems with a mono diet is that we don’t know how foods interact with each other. Most Americans appear to get most of their calories from a tiny number of sources: mass-produced wheat;[2] sugar and “edible food-like substances” like high-fructose corn syrup; beef, chicken, and pork; and some oils/fats, like safflower oil. That tiny number of sources is listed in the number of calories. Yet “humans are omnivores, requiring somewhere between 50 and 100 different chemical compounds and elements to be healthy. It’s hard to believe that we can get everything we need from a diet consisting largely of processed corn, soybeans, wheat and rice.” It is hard to believe, and I don’t believe it. Grocery stores are stocking more foods than ever, for the minority of people who want to take advantage of them, while the majority of people are subsisting—not even thriving—on a tiny number of foods.
We can and should do better. I’m trying to continually expand the range of things I make and eat. Sometimes my range contracts—I used to eat a lot more lettuce than I do now, since lettuce neither blends nor cooks well. But, as noted previously, I’ve got access to a far greater variety of beans thanks to Rancho Gordo. Rancho Gordo sells xoconostle, too, which I’ve put in mole de olla, along with a spicy black bean and sweet potato soup that Bess loves. I’ve been experimenting with different chiles. I saw something called “golden berries” in Sprouts and bought those: they have a kind of a tangy-tart flavor in smoothies. Frozen passionfruit is available, so I picked up some of them. Dragonfruit are overly expensive but go on sale often enough that I can snag some and put them in smoothies, too.
Maybe none of this matters, and I see the comedy in the guy dying of cancer who is nonetheless concerned about whatever micronutrients golden berries or obscure dried peppers might impart. Clearly, whatever I’ve done isn’t working, since my interest in nutrition hasn’t stopped me from getting cancer and then cancer recurrences. But I like to think my choices matter, for Bess if not so much for me, now that my time is short.
Cooking, Bess tells me, is part of what attracted her to me at first: for our second date, I made her potato paneer curry from the Moosewood cookbook. I didn’t have paneer, so I substituted cottage cheese. She maintains that I got frustrated with how long the potatoes needed and served the dish with the potatoes still partially raw. I’m doubtful of that rendition but my mind was not chiefly on the potatoes; I had other issues to occupy me. Whatever I did seemed to have worked, and to continue working.
She was in med school then, and thus chronically harried for time. Despite lacking time, she’s always been someone who likes to eat, but, from what I’ve observed, she’s also someone who won’t do much of it unless someone else is nudging her to. She’ll subsist on a thing of takeout for a whole day, or buy a smoothie and sip it for hours. For some bizarre reason her parents never used a dishwasher when she was growing up, and when I first met her, she never used the dishwasher in her apartment. It took my example for her to realize that, as anyone would expect, a dishwasher is a great device. People who like to cook like—really like—dishwashers. One reason takeout is so popular in New York is the quality of takeout there, but the lack of dishwashers in old buildings is another. New York should really allow landowners to construct new buildings with modern contrivances like dishwashers.
The other day, I got back from an infusion in San Diego and wondered if the birria-style soup I’d left with her had been enough. Bess assured me it had, and yet when I looked in the fridge, it seemed like most of the birria was still there. I told her I was worried about her, and worried about what would happen to her after I’m gone; I said that it seems like she’d eat two gyoza and an olive and call that dinner. She looked spooked and confessed that the day before she’d eaten like twelve gyoza, and three olives, for dinner. An eternal golden braid connects our minds, and I guess something must’ve slipped over that braid.[3]
We share food and a philosophy of food, which is large part of our shared philosophy of life (which includes similar views on walking, parking minimums, and predatory zoning restrictions). I once tried to date a woman who wouldn’t eat much more than chicken, pizza, French fries, and pasta—she was still young enough that this diet hadn’t yet caught up with her. We went out to dinner with friends once, and she was unhappy that people laughed when she ordered French fries at whatever real restaurant we were at. I replied with something like: “Then order something else!” An adult who eats like a child can’t be surprised when other people are surprised by childlike behaviors.
As I mentioned, Bess barely ate while I was in the hospital and after I got home, until I began trying to be minimally generative in the form of cooking. I encouraged Bess to eat. Although I couldn’t eat then, I didn’t want to deny the pleasures of the table to her, or to anyone else. Bess knew I didn’t begrudge her eating, but she said that eating when I couldn’t left her feeling emptier than before she filled her stomach. We did meals together, and she later confessed that doing something so fundamental to our connection alone felt like she was choosing to leave me behind, as if she was practicing for a future of tables set for one.
Instead, Bess said she imagined the time like I was running late for a restaurant reservation. She didn’t want to start without me. I appreciated her not wanting to shove that which I could no longer have in my face, but I wanted her to take care of herself. I also wanted, eventually, the connection that feeding people provided, even if my own relationship to eating had to change. Just because I couldn’t do something doesn’t mean others shouldn’t. Life will go on after me, and that is good. Many parts of life that I can’t partake in continue now, and that is the way of the world. In some grand sense our lives are temporary, and it’s what we pass to the next generation that most matters—including consciousness and life itself.
I’m against unnecessary suffering and in favor of creating a better world, whether through food or other means. A big part of creating a better world is creating that better world for those who come after me: that is why I’m against NIMBYism, in favor of building a better future in literal and figurative ways, and for bigger, better, and great technology and technological progress. There’s a selfish element to that last bit, in that medical technology is the only thing that might extend my life, but even medical technology is too late to save my tongue, and I’ll suffer from tonguelessness until the end. Freedom and technology create a better, positive-sum world for everyone. The people who are against lowering housing costs or restricting infrastructure are mistaken in their views of human flourishing. If I’d been smarter, I’d have focused my life on building the future, instead of reading books. We all make errors and that’s one of mine.
I don’t know why, but I still like reading restaurant reviews. It’s like a eunuch watching pornography, I guess: pointless. Yet I do it anyway. I don’t know why. There aren’t even good reviews of restaurants in Phoenix, so I tend to read reviews of New York restaurants—a place I don’t live and an experience I can’t have, which is doubly pointless. I guess I’m activating memories of times past. Proust has his madeleines, while I have Pete Wells’ reviews. But it’s not as good as doing the thing. I can blend and swallow takeout, now, which is a lot better than nothing, but even if I live far longer than expected, I’ll likely never eat in a restaurant again.
If there’s a thesis in my writing about food, it may be that food is often not just about food. I meant to write about food—the cooking of it, the learning about taste and texture profiles, the skills I’ve developed in the kitchen—but instead, I kept being drawn to the topics that food helps enable—to the stuff of life, which is to say, our relationships with other people. That’s what so much of food and culture are about. Write about one thing, and, as you weave that thread, it turns out that you—and by “you” I mean “I”—write about the whole world.
[1] Oddly, some people in my complex still drive to Sprouts, despite walking being faster and more pleasant. I think of such things when I read that 40% of American adults are obese, and another 30% are overweight. Ozempic is great, but how behavioral changes are possible, even at current margins?
[2] That article is titled “Bread Is Broken: Industrial production destroyed both the taste and the nutritional value of wheat. One scientist believes he can undo the damage.” As that writer says:
Before the advent of industrial agriculture, Americans enjoyed a wide range of regional flours milled from equally diverse wheats [the plural is deliberate], which in turn could be used to make breads that were astonishingly flavorful and nutritious. For nearly a century, however, America has grown wheat tailored to an industrial system designed to produce nutrient-poor flour and insipid, spongy breads soaked in preservatives.
Perhaps we should try something different—but, as with most things, that’ll require greater demand for better products from people, and most people are content with McDonald’s, frozen pizzas, Taco Bell, and so on. Sweetgreen’s market cap as of this writing is $1.2 billion; Yum Brands, which owns Taco Bell and other super commercial fast food chains, is worth $36 billion.
[3] If there are any spycams in our apartment, I didn’t install them.
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.
No sane person wants their tongue removed, but having it out and not being able to swallow has particularly awful resonances for me: I’ve been into food and cooking since I was a teenager, and “going out to dinner” was the most common form of going out for Bess and me. “Having friends over for dinner” was our most common form of socializing. I chronically experimented with new food and gadgets in the kitchen. What can I make with fish sauce? Is the sous vide machine worth it? Can an air fryer replace the oven for many dishes? Will the capers in cauliflower piccata alienate our guests?
After the surgery, the questions changed. Would I meaningfully survive at all? In that first week after the surgery, I felt I should be dead. What would happen to me? Would any semblance of normal life be achievable?
I like to eat—or, rather, liked to eat—and, at current levels of technology, everyone needs food. So why not combine what I like to do, what everyone needs to do, and what I can afford to do? “Come over for dinner” is low stakes: eat for an hour and discuss the projects we’re working on, the things we’ve learned lately, or the ideas we’ve been having. Then go somewhere else, or do something else, or finish the work.
Most people experience diminishing marginal returns from hanging out: the first hour might be great, the second okay, and the third drags. How many times have you wanted to leave some event that was good for a while but ceased being so, yet you felt socially obligated to? For this reason, a time constraint, true or not, improves a lot of meetings: “Let’s go for that walk at 3:00, but I have to run by 4:00.” A lot of us aren’t that interesting, or don’t vibe as well with one another as we could or should, or aren’t working on projects that are fun to share.
Things are past the optimal point when phones come out and videos or whatever start being passed back and forth. For some reason, a lot of people want to fill the time they have with hanging out, but my ideal is different: we should hang out for the right amount of time—which is, I think, usually the length of a long meal—and that’s typically not all day, even if theoretically all day is available. Because the ice cream is there doesn’t mean all of it should be eaten; because the day is there doesn’t mean the whole thing should be spent.[1]
That a lot of us aren’t maximally interesting is a weakness mostly ignored in David Brooks’ book How to Know a Person: The Art of Seeing Others Deeply and Being Deeply Seen, as I describe in “The quality of your life is the quality of the people you get to know.” Yet Brooks says some people are better at eliciting the best in others, and that we can consciously improve our ability to elicit the best. I want to think I am one of those people, and that the act of feeding people interesting things helps to bring out the best in them, but, if I’m being honest or realistic, I’m likely not.
Before the May 25 cancer surgery that took my tongue, I’d been lifting weights, steadily but poorly, for a decade, and that habit is in part responsible for me pulling through the horrific aftermath of the surgery. The more physically robust a person is, the greater the margin for pain and for recovery—and I feel like I barely made it through the long, brutal surgical recovery period, which constituted the whole summer, followed by chemo in July and August, and then by an indolent infection in September and October. I weighed 175 lbs before my first cancer surgery, in October 2022, and bottomed out in the 133 – 136 range last summer. Now I’m hovering between 138 – 142, despite extensive, annoying, continuous efforts to eat more, via both mouth and feeding tube injection. Eating can be a pleasure or pain, but eating for weight gain isn’t fun, particularly when the weight gain is elusive.
For months, food has stolen too much focus from me, because I need to avoid missing meals to maximize calories. Did I just wake up? Time to make a smoothie, or blend some leftovers, and then inject a bag of Liquid Hope through my feeding tube. Is the sun scooching past its zenith, which means lunch time is a little behind me? Then some calories need to go in. Are we getting past 8:00 p.m.? That’s a potential problem because of acid reflux if I lie down too soon after eating. Whatever else I’m doing, or learning, or concentrating on, there’s an annoying cognitive process weighing my food needs running in the back of my mind. Weight training can help me gain weight, yes, but to make the weight training effective, I have to consume enough calories—with “enough” tending to mean “somewhat more than I’ve been able to ingest on any given day.” Since I can’t chew or swallow normally, food must be blended with water for either injection or swallowing, and water reduces caloric density.
Eating is important, but, as noted, I hope to augment food with lifting. Before that first surgery, I could rep 145 lb on the squat fairly easily, and I was working my deadlift reps towards 225 lbs—”two plates,” in meathead parlance.[1] Not a lot, but better than no training. When I got back into the gym maybe a month after my first partial glossectomy in November 2022, I felt like I could barely lift my arms, and had to re-start with the bar on the squat rack, and 15 lbs training bumpers on either side of the deadlift hex bar. I started re-building as best I could, though I knew that radiation therapy would probably knock me back again.
In being knocked back, I feel some kinship with the totality of humanity. For most of human existence, humans have been building up all kinds of tribes, structures, and/or civilizations, only to be knocked back by weather, climate change, internal dissension, greed, barbarians, technological regression, disease, or some other force. It’s only since the Industrial Revolution that humans have managed to mostly transcend the condition of agricultural misery and paucity, though we might wind up in such horrifying conditions again, via nuclear war or plague or some other malady. As individuals, we’re less robust than contemporary societies or cultures, and we’re prone to setbacks like the ones I’ve experienced. I suspect that how a person responds to setbacks says something about them; my view is that the appropriate response to adversity is to persist, even futilely, even as one possibly rages against the dying light.
That philosophical outlook is evident in me going to the gym despite feeling wretched and janky. To not go is to risk not replenishing my margin for future, and (realistically) inevitable setbacks. To not go means there is worse to come. Sure, as long as the clinical trial drug petosemtamab keeps working, I can probably hover in the 140 lbs range without risk of organ failure or starvation. Apart from being skeletally thin, the other worry is the next bump in the road. What if I need another surgery? What if there’s more chemo in my future—which I expect before the end, even if “more chemo” is an effort to hold the line as I exit one clinical trial and before beginning another? What if a clinical-trial drug causes nausea? What if re-irradiation comes, and the pain that already accompanies swallowing worsens? I list the known unknowns: the unknown unknowns are infinite.
As I write this, I take a break to check my weight: 140.1 lbs. Not great but could be worse. The last week hasn’t been ideal regarding the gym : on Monday I was wrapped up in a project, Tuesday I flew to San Diego and got settled there, Wednesday I had a petosemtamab infusion, Thursday I flew home, Friday I withdrew from the prescribed dexamethasone—a steroid—that is supposed to help prevent infusion reactions to petosemtamab, and today, Saturday, I finally got in to do overhead press, hangs, and the leg press. I should’ve squatted but delayed, making excuses. The fire that used to inspire me to pump iron is gone. Meatheads speak of the “pump” when they lift; Arnold Schwarzenegger described it in Pumping Iron:
The greatest feeling you can get in a gym or the most satisfying feeling you can get in the gym is the pump. Let’s say you train your biceps, blood is rushing in to your muscles and that’s what we call the pump. Your muscles get a really tight feeling like your skin is going to explode any minute and its really tight and its like someone is blowing air into your muscle and it just blows up and it feels different, it feels fantastic. It’s as satisfying to me as cumming is, you know, as in having sex with a woman and cumming. So can you believe how much I am in heaven? I am like getting the feeling of cumming in the gym; I’m getting the feeling of cumming at home; I’m getting the feeling of cumming backstage; when I pump up, when I pose out in front of 5000 people I get the same feeling, so I am cumming day and night. It’s terrific, right? So you know, I am in heaven.
I personally haven’t experienced the level of, um, endorphin rush that Arnold describes—I suspect few people do, or gyms would be packed—but I’ve gotten a pale imitation of the physical satisfaction he cites. My occupations have been thinky and sedentary, and running or lifting contrasts with sitting in the chair or standing and typing. Unfortunately, whatever physical pleasures lifting once brought have dissipated. Now, it’s more chore than not. An important chore, but a chore. It used to be fun. I used to know how to make it fun. I’m sad that that sense of fun is gone, and I’ve not really been able to rekindle it.
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.
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.
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.
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?”
[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.
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.
[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.
[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.
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.
Having a body is already a UX* nightmare: There’s the feeding, the cleaning, the general upkeep, the constant and varied states of discomfort (depending on your age, setting and health). When things go wrong—as they have for me, given that a squamous cell carcinoma infestation is busily working to suck up every nutrient I take in and leave what I consider to be “me” dead—they can go really, spectacularly wrong. The healthcare system is, presumably, in the business of meat-suit maintenance and optimization, much like the gym or smoothie industries, and unlike McDonald’s, and yet, if the same level of consideration was given to our bodies as is commonly given to a car being detailed, the body shop would go out of business.
Body shops for cars and body shops for humans seem to operate on different standards, although I suppose one could argue that cars are simpler than humans and better understood by humans. Mess up a little on the car, and the mechanic might have an angry customer; mess up a little on the body, and someone dies. “Good enough,” when it comes to the human body, often isn’t close to good enough. And yet, in the last year, as I’ve become a tremendous consumer of healthcare services, I’ve seen how often things don’t get done. I need a Project Manager (PM) for healthcare, and, since no one has stepped forward to project manage project Jake, Bess and I have wound up becoming janky, half-knowledgeable, struggling PMs with a vital project: make sure Jake doesn’t die.
So many aspects of treatment and recovery have seen Bess and me fighting and struggling to figure out and implement things that should’ve been explained to us, instead of us being left adrift to solve problems on our own; if not for our backgrounds, attitudes, and fortitude, I’d probably be dead right now. Bess being a doctor and me having worked extensively as a consultant in healthcare and healthcare research shouldn’t be relevant to me getting important, lifesaving care, and yet both matter. Instead of us having to jerry-rig care, learn the clinical trial process, and double check whatever we’ve been told by doctors, the whole system should work better for everyone. It shouldn’t take two reasonably bright, exceptionally determined people so much effort to navigate the healthcare system. If it’s this hard for us, what’s it like for other people—normal people who don’t have some of our experiences, expertise, endowments, or credentials? What hope do they have? Yeah, you might hear bleating from people in the healthcare system about diversity and access, but how’s that translate into action?
Bess and I feel like we’ve had to become semi-experts in oncology in order to make sure that I get the treatments most likely to ensure I don’t die sooner than I have to, given present technology. That we’ve had to assume that healthcare PM role is absurd, but if we don’t, who will? No one else is watching out for us.[1] No one else is comprehensively guiding us. So much falls through the cracks. In theory, doctors are supposed to be the experts in what’s both possible and optimal. In practice, we’ve discovered that’s frequently not the case. Opportunities for the system to automate recommendations for patients receiving chemo, PEG tubes and surgeries were also missed, putting the burden on what a doctor can remember to recommend during a short visit, as opposed to trying to streamline important processes for all patients coming through large academic centers with the capability to better automate.
As difficult as it may be to accept in the midst of a life-and-death situation, when you’re weakened, exhausted, struggling to concentrate, and relying on experts to guide your best interests, the answer to the question of “who cares?” is: no one cares as much as you and the people who love you most.
Clinical Trials
Even before the metastatic squamous cell carcinoma recurrence that’s likely to kill me, I understood intellectually that people with serious healthcare problems do better when someone—their spouse, or parent, or child—looks out and advocates for them, but I didn’t appreciated the extent to which that’s true.** The clearest example is described by Bess in “Please be dying, but not too quickly, part 1: a clinical trial story,” which tells our struggle to really understand the clinical trial system and then to find a clinical trial that might prolong my life. And we succeeded! Which is great. People love a (relatively) happy ending. But finding and entering that trial shouldn’t have been as hard as it was, and it shouldn’t have taken as much backdoor maneuvering as it did. Bess wrote “Please be dying” as a guide for other patients who find themselves in our position and don’t have as much ability to work the system as we did, and still do. I wish that writing the guide didn’t feel so necessary.
If not for our (realistically: Bess’s) efforts, I probably would’ve gotten some palliative chemo and then died. That’s the standard path for R / M HNSCC. Multiple oncologists independently encouraged us to pursue the “chemo-then-die” path. I found their encouragement of me to roll over into the grave prematurely curious. Isn’t their job to help people not die? Isn’t that what being a doctor is? To be sure, giving false hope is bad, and there’s a lot of futile end-of-life care in medicine, especially in oncology. Bess and I wanted to make sure, though, that accepting death was the only option. I’m not irrational: I know fruit diets or protein diets or coffee enemas or hydroxychloroquine or whatever else Internet people pitch won’t work. Yet we found good trials for R / M HNSCC, and one oncologist called head and neck cancer “a hot R & D area.”
Which is why it’s so wild that so many oncologists dismissed clinical trials as futile, or too much effort for the likely outcome. Do they know how much effort it takes to go through palliative chemo for the certain outcome of death? Now that I see what went into finding the trial and getting me into the trial—the trial that is successfully shrinking my tumors and keeping me alive—I can’t help but wonder: too much effort for whom? That I’m able to write this is a testament to the virtue of ignoring some medical advice and seeking advice from outside the standard system.
Nausea drugs for chemotherapy
The lack of aid around clinical trials is the most egregious example of medical oversight, but it’s not the only one. I got two rounds of chemo, one on July 24 and the other August 14; the chemo consisted of carboplatin and paclitaxel. The former is in particular a notorious fomenter of nausea. Bess and I asked the oncology care team at the Mayo Clinic Phoenix about the plan for nausea. They wanted to use Zofran and a single IV dose of emend (“Aprepitant”) during the infusion, and Zofran and compazine at home. “That’s it?” Bess and I said to each other. She’s given more robust antiemetic regimens to patients coming to the ER for a seasonal GI bug. I’ve had cisplatin, one of carboplatin’s evil cousins, and consequently suffered from intense nausea. “We’ll see how it goes,” was the reply. No one mentioned that having had a platinum chemo in the past increased the likelihood of vomiting from future platinum chemo. Fortunately, Bess and I have a friend who could help guide us, and with help we rattled for a more serious regimen: Emend, Zofran, Ativan (as needed), and olanzapine. Why take only one dose of Emend? Nothing we could find indicated that it’s dangerous to take it for a few days. Studies show a 3-7 day course are both clinically safe, and a three-day course is the most frequently provided.
Emend is generic and we found it for $50 to $300 a dose in pharmacies, so it’s not expensive. Compazine was approved in 1956 and olanzapine in 1996; the latter has been studied for chemotherapy-induced nausea and vomiting (CINV). Why use the older med? Ativan is a useful backup. Maybe the Emend and Zofran alone would’ve worked, but it’s easier to remove meds if they seem unneeded than it is to stop nausea and vomiting once they start. Oncology ordered our requested medications, and the palliative care team added on the ones that they forgot. Instead of waiting to see how badly I’d suffer, I didn’t vomit once and discontinued the olanzapine while continuing the other meds the week of chemo.
Why are we rolling our own medication list?
Port access should have made things “easier”
I have a port catheter inserted on the right side of my chest, just south of the collar bone. The day after the port was surgically installed by interventional radiology (IR), I needed to get blood drawn. I told the nurse about the new port, or the nurse saw the port in my chart, and he said he could use it. I said okay, not knowing much about the port, except that it’s supposed to be more convenient and less painful than getting my arms routinely stuck. The nurse inserted what seemed (and seems) to me a massive needle straight into it, and I felt the kind of pain that made me yelp and see space. It was insane. I got home and told Bess about what had happened. “Didn’t they give you numbing medication?” she asked.
“Numbing medication?” I replied.
Turns out that you can put topical lidocaine on the port to numb it, and/or nurses can use a tiny needle to inject a tiny amount of lidocaine before the big needle goes in. No one told me. Neither did anyone call in a prescription for a topical numbing medicine and instructions to use it forty minutes before the port was accessed to avoid the pain of being literally stabbed in the chest with a large bore needle. When Bess asked for the prescription, it was called in (notice a theme?). But no one told me ahead of time, or seemed to even consider that a fresh, bruised port, would hurt when accessed. Why not?
PEG tube
I had a PEG tubeinstalled while I was in the hospital between May 25 and June 5, and for several months the PEG tube was the exclusive means by which I got calories. This is what said tube looked like, until recently:
Make fun of this photo as you see fit: my friends already have.
As you can see, the damn thing sticks like six inches out, so it’s forever flopping around and getting caught on things. I relied on it to not die of starvation, which made this little item the most-interfaced with bit of medical equipment after my trache came out. Because of the constant in and out of the tube, the tissue gets irritated and forms painful masses of “granulation tissue” that requires steroids.
The white thing parallel to the tube itself is a “Grip-Lok” adhesive system, which I was constantly changing and which left my skin messed up. Showering was unsatisfying because of the Grip-Lok. Hugs were fraught. The damn thing kept getting caught on my shirt whenever I moved my arms. I struggled to gain weight, but the PEG tube also meant that I struggled to lift weights at the gym, because of the way it entangled with my shirt.
The PEG tube caused other problems; on Dec. 13, for example, the PEG tube inadvertently opened. Maybe it got caught in my belt or my shirt or something. Whatever the cause, stomach acid and partially digested Liquid Hope spewed all over me and the floor, which is both painful and gross: it smells like vomit (cause it is vomit). An open PEG tube literally spills calories out of me, and the resulting mess is hard to clean. So many things about my present (and permanent) condition are frustrating, like the tube opening, which makes an already physically and existentially difficult situation that much more frustrating. I can’t ignore a six-inch tube protruding from my body, and I have to interact with it multiple times a day to stay alive.
PEG tubes are supposed to last six months. Between June 5 and now, I had to go to the emergency room three times for tube problems: once because the tube slipped out of my stomach because the balloon had ruptured, and twice because the tube began leaking from the place where I (properly) kinked it. I know I properly kink it because I’ve checked with the education nurses to make sure I wasn’t inadvertently doing something wrong.
The third time happened Thanksgiving evening. Bess and I were lucky that the ER was relatively quiet, and one of her colleagues was able to locate a new tube and install it expeditiously. Still, hardly anyone wants to spend extra time in the ER.
The oncologist supervising me for the petosemtamab clinical trial at UCSD is named Dr. Sacco, and when I mentioned the Thanksgiving ER visit, she suggested I get a “button tube.”
“What’s that?” I asked.
She explained that it’s possible to install a PEG tube that’s low profile and comes with a detachable exterior tube (it’s also called a “mic-key” tube—as in much of medicine or the military, why use one term when you can use a bunch?). Bess followed up with my gastroenterologist, who said a button tube sounds like “a great idea, let’s do it.” We asked if one could be installed and, much like requesting necessary prescriptions, it was scheduled right away. Which is nice, but, also, why didn’t she tell me that the smaller, more humane tube is an option? Why were we once again having to direct my care in order to actually be cared for? The GI doc knew about my prior tube problems. Why do Bess and I have to figure this out? Neither of us are PEG tube experts. Instead of the system I used to have, my current situation looks like this:
That tiny nubbin is far easier to wrangle than the giant hose. Now the PEG tube doesn’t get caught on my shirt, or in my pants, or, potentially, on other objects. If it opens, nothing happens. Nothing, because I have to pop in an extension tube to inject. No spew. I don’t feel it rustling every time I move. Bess can hug me without coming at me from a ninety degree angle to avoid moving the tube. It turns out that installing the protruding PEG tube is standard the first time someone gets a new tube, but after two months the tract into the stomach heals and anyone can get a button tube.
So I could’ve gotten a button tube back in, say, August or September, and saved myself tremendous hassle. I asked the nurses who showed me the button tube what the downsides are, and they said that older people who don’t have good eyesight or dexterity may struggle to get the tube itself inserted and removed. Neither applies to me. For me, the button tube is all benefit. Yet I didn’t realize that a better PEG tube system is possible. So much of medicine is left to coincidence and circumstance, and I didn’t know what to ask. We didn’t know that we didn’t know.
Showering is even pleasant again! Maybe I’ll get in a pool somewhere? It’s been so long.
Phone calls to a man with no tongue and a trache in his neck
My tongue was removed and a “flap” installed on May 25. I got out of the hospital on Monday, June 5. Given that I had a tracheostomy tube in my throat and a massive, inflated flap of muscle in my mouth, I couldn’t talk. Yet that didn’t stop an incredible barrage of phone calls in the following two weeks. At the time, I wrote to friends and family:
Mayo clinic does everything via phone call. Given that they have a sizable ENT practice, which includes a large patient panel of people whose larynxes and voice boxes they have surgically removed, meaning many of their can’t speak, not incorporating texting-based contact seems bizarre. All these people call and leave messages asking me to call them back—but I can’t! Bess can, but she’s at the end of her tether too.
My sister stayed with me during that period, and she found the same:
On the topic of “remarkable,” albeit lacking positivity, is the sheer volume of calls and information directed at you daily. Your call log is just a fraction of what you’re dealing with. and possibly the most outrageous part of it all is the sound of surprise when the person on the other line (typically from insurance, mayo or other medical-related entity who should have access to your immediate medical history) when they learn, yet again, that you cannot speak.
Let’s say Bess wasn’t helping me. How would I handle all those calls? Shouldn’t there be a system for contacting people who can’t speak? I’d ask what would’ve happened if Bess couldn’t speak either, but now we know: Bess has just had vocal chord surgery, and whenever she gets a call she can whistle hello, and I can try to speak, and usually people just hang up and don’t call back. They must think they’re being pranked.
How about some gastrointestinal distress?
I wrote about this here, but I was initially prescribed an injectable food-like substance to subsist on, calorically:
I shuffled like a zombie, my left leg weakened from the taking of muscle. Inability to sleep due to snot and mucus meant that I lived in a foggy haze. Any food I ingested came from a horrible Nestlé product called “Nutren® 2.0.” Sample ingredients, taken from the Nestlé Health Science (science?) Nutren® 2.0 website:
I don’t think humans are meant to survive on sugar (not just one kind, but two are listed there), soy, palm kernel oil, and canola oil. I’ve never heard anyone recommend to a convalescing patient that they will get better faster on, exclusively, McDonald’s and ice cream (though you wouldn’t know it from reading hospital menus). But the Nutren® 2.0 edible food-like substance was on hand and probably easier on my stomach than real food. The Nutren® 2.0 first got injected by naso-gastric tube, a sensation that felt like postnasal drip I was expected to eat; maybe six or seven days after the surgery, interventional radiology (IR) punctured a hole through my abdomen and into my stomach to place a peg tube. That was better than the nose tube, except for the process of having it placed.
Later, however, I learned:
if you have to “eat” via peg tube, Functional Formularies’ Liquid Hope product is what you want, since it’s composed of recognizable ingredients that might offer some nutritional value
Someone from Mayo must’ve told Bess and me about how much better Liquid Hope is than Nutren 2.0 or Boost, right? “LOL,” as they say. Nope. A friend did. I wrote a friends and family email about how horrible Nutren 2.0 and Boost are, and said friend told Bess and me about Liquid Hope, since I’m not the first person to have perused the ingredient list of synthetic food-like substances and found those substances wanting. How could anyone with any awareness of basic human metabolism say to themselves: you know what people recovering from major cancer-surgery need to develop on top of everything else? Insulin resistance. The nutritionists I talked to during nutritional counseling seemed only to count calories. Counting calories is fine, and there are circumstances where people have major gastrointestinal disorders that prevent them from digesting normally, but there’s more to food and nutrition than the number of calories. If this is obvious to me, and anyone who’s read Michael Pollan, why isn’t it obvious to them?
It’s happening to everyone
It’s not just me: We have a friend who’s been trying to get pregnant via IVF for a while. She’s worked with two IVF docs, and one suggested an extra cycle of egg harvesting to make additional embryos in case she and her husband wanted extra options in the future, since they want two kids and she’s already 40. Six months in egg age can drastically change the ability to make embryos, and it’s recommended that women bank three embryos for every one child they want, since embryo transfers only “stick” 60% of the time (“stick” is the technical term). If they don’t bank embryos now, by the time she’s done with the first pregnancy, it may be too late to produce and harvest healthy eggs for another.
Our friend said to her other IVF doc: “Hey, do you think it’d be useful to do more egg harvesting?” And, in her account, the other doc was like: “That’s a great idea, I think more now is always better, let’s do it.” And our friend was like (mentally): “WTF? Why am I telling YOU this? You’re the fucking reproductive medicine doctor! If you think it’s such a great idea, why didn’t YOU suggest it to ME?” That same feeling has pervaded my cancer treatment. Even the words are similar to those I’ve heard from some of my docs. Why isn’t more of the IVF stuff standardized? Why is our friend only getting care that the doc thinks is great because our friend suggests it? The IVF doc is the expert, right? Shouldn’t the IVF doc know what to do and how to do it? Why is her patient guiding her, instead of her guiding the patient?
Another example, another friend. The other friend, who we’ll call Ashley, found a lump in her breast. She went to see her primary care doc, who felt the lump and said it’s nothing. A year later, the lump is still there, and Ashley is nervous. She works in healthcare, so she gets a friend of hers to write her for a mammogram and ultrasound. The lump is a highly unusual cancer, but definitely cancer. Will the year cost her her life? It’s going to cost her the breast at minimum, and her breast might’ve been saved by more timely intervention. What if Ashley hadn’t worked in healthcare and hadn’t followed up? What if she’d listened to her doctor?
I’m sensitive to the overly extreme role that lawyers play in the healthcare system, especially being married to an ER doc, but I think Ashley should really get a lawyer.
* “User experience,” the dark cousin of “user interface.” When you get frustrated by a badly designed website, the problem is often one of UX/UI.
** I thought its importance a 20 on a 100 point scale, but now I think it’s more like 55.
[1] The doctors who Bess chased down, queried, texted, called, and otherwise begged for help did offer their perspectives and, in a few cases, a very large quantity of their donated time, for which we’re incredibly grateful. If you’re one of those people, thank you! But if we hadn’t spent countless hours and resources trying to access them in the first place, we’d’ve never been privy to some recommendations and suggestions that were pivotal in decision-making.
The Story's Story 