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.

Systems challenges

(Bess wrote most of the next two paragraphs.) I’ve mentioned the ways doctors are not optimally acquiring and imparting vital information to me, but the blame rests too on the healthcare system itself. Physicians are forced to see ever-increasing patient panels in the same number of hours. Managing complex oncologic care for hundreds of patients without adequate time to commit to the unique needs of various patients means that details which might improve someone’s quality of life are easily overlooked in the struggle to simply keep patients alive. Keeping as many patients alive as possible means using standard of care meant for the majority, and patients who need thinking outside the box, or semi-personalized clinical trial searches, get overlooked. Hospitals incentivize the numbers of patients “managed” over outcomes of that management, like the quality (and length) of patients’ lives. An oncologist won’t need to spend the same number of hours as we spent researching each patient’s optimal treatment plan—after all, they’re experts in the clinical landscape and we were starting from scratch—but still need to find time to ask the questions that help them understand how to optimize a patient’s care. If the hospital isn’t giving them that time, where are they squeezing it from?  

If oncologists don’t get time, important discussions never happen. Opportunities for automation are also missed at a hospital level. Doctors shouldn’t have to remember to ask every patient the same questions that could optimize their treatment and support plans, if those questions are built into the system. For example, a timed message on MyChart would’ve solved my PEG tube problem: “Alert. It’s been two months since your PEG tube was placed. You qualify for a low-profile PEG tube. Are you interested in changing your tube? Click here to learn the difference between PEG tube options and to send an automatic message to GI.” Software remembers to ask things that need to be asked of most patients on a schedule. Additionally, nurse and care managers can play a more active role in managing quality-of-life problems like symptoms and side effects. Palliative care helps, but care is fragmented, and there’s no clear team approach to introduce some redundancy and decrease missed opportunities.

I’m probably alive right now only because of my ENT, Michael Hinni, at Mayo; when I first got a hot PET scan on April 26, he put in orders for faster follow-ups in the form of a CT scan, because radiology scheduling said they couldn’t get me in for a scan for two months (!!), despite the likelihood of a time-sensitive cancer. Dr. Hinni managed to get me a spot within a few days, then quickly got an initial fine-needle biopsy executed (inconclusive), then a core biopsy (which seemed conclusive, but Dr. Hinni didn’t trust it), and then he performed a surgical biopsy which confirmed my cancer recurrence. All of that happened over the course of two and a half weeks, instead of many months. At typical Mayo scheduling speed, by the time I’d be fully diagnosed—probably not until June 2023—the cancer likely would’ve been too advanced for Dr. Hinni to operate. By now I’d be dead. Which is a kind of refrain for this essay: a lot of things had to go right for me to be alive at all as of January 2024.  

It’s good to give credit where it’s due; numerous doctors, nurses, social workers, medical aids, techs, and other people in and around hospitals have helped me and contributed to me being alive to type this right now (and provide human-written fodder to future versions of ChatGPT). I don’t even know all their names, but I appreciate them, whoever and wherever they are now. I don’t want to sound churlish and I’m grateful for the extensive and extreme efforts that have gotten me to where I am today.

Yet I also note the shortfalls, which are real and more severe than they ought to be. They seem systemic, rather than the result of the idiosyncrasy of my own case. Thus, my writing about my experience and trying to help other patients get the aid they need.

Most doctors share a broad body of knowledge and are, on the whole, applying that knowledge correctly, in most circumstances, most of the time. I’m not writing a “doctors suck” conspiracy theory rant. The extant medical system is much better than letting random quacks pretend to be doctors. Many patients have erroneous beliefs about medicine, starting with the many people who think antibiotics will cure their viruses, and moving on to people who think their cancers will be cured through juices or berries, and then moving to the people with factually incorrect Covid beliefs that persists regardless of the evidence (this list is not exhaustive). Despite these caveats, doctors are not perfect, most of them are heavily time constrained, the number of things that can go wrong with the human body is tremendous, and doctors are not universally energetic or able or interested or engaged or knowledgeable, particularly as problems and treatments become more obscure and less rote.

Since I’ve moved far out from a standard problem, Bess and I have had to do more and more to manage my care. It sucks to have to do so, but the alternative is making me more likely to die. Now that we’ve been at it for a while, though, I realize that a lot of people with R/M HNSCC also fall into the “outside of the standard of care” category, because the standard of care (palliative chemo) is terrible. The more I learn, the more it feels like there’s less of an excuse for head and neck oncologists to focus on the minimal “standard of care” options and not be better informed about clinical trials, since clinical trial aid should be standard—rather than shrugging and letting a patient die after a brief and bitter bout of chemo.

Despite doctors’ time constraints, the few hours a month it would take to stay up to date on the clinical trial landscape (especially regionally) could be broadly applied to most of their patient population, which seems like an amazing return on investment. Instead of each patient spending weeks performing their own research from scratch, as we did, and as most patients can’t, a motivated oncologist could provide improved care options for patients for whom standard of care really just means death. Due to the writing I’ve done, I’ve gotten emails from about a dozen people in varying stages of head and neck cancer who are looking for guidance. It seems I’m not alone in not getting adequate help finding clinical trials.

If clinical trials are the only decent option available, oncologists should thoroughly understand the options in their field. If I’d relied on some of the oncologists we’ve talked to, I would’ve gotten chemo until it stopped working, and then died, which seems not optimal to me. The writing that Bess and I have done has proven more helpful to a lot of people than the aid their oncologists are giving. Needless to say, it should be the other way around.

In a podcast with Brad Hightower and Daniel Fox, both of whom work in clinical trials, Bess and I mentioned repeatedly the roles that chance and luck played in finding me the right clinical trial. Luck played a substantial role, especially luck that Bess is a physician, which I’m sure helped us get responses when she cold-emailed other docs—but so did relentlessness; as is commonly observed, “the harder I work, the luckier I am”. That Bess and I managed to find one of the best, if not the best, clinical trials for me is great, but we shouldn’t have to rely on luck. The system should work better for all patients. My ability to make the larger system work better for everyone is limited, but I can at least deploy the writing skills I have to try and make a positive impact on the world. I can try to attempt to empower patients who are suffering and dying to help themselves. Bess is also trying to figure out ways to help oncologists stay up to date on the clinical trial landscape and has some ideas in the works. If we can lower the time and energy expenditure necessary for already-overworked oncologists to stay up to date our hope is that they’ll be more likely to help their patients navigate clinical trials. Ultimately, I believe doctors want to help, and lowering the activation energy for doing a more thorough job will make it easier to do so.

I mentioned earlier in this essay that I’ve been doing a lot of emails and some calls with head and neck cancer patients, nearly all of whom report oncologists who aren’t adequately engaged in explaining treatments and options. That a random guy sitting in an apartment in Arizona is better able to help a dozen+ people than the highly credentialed professionals being paid to help tells us much about the system as it presently stands. My life now consists of a lot of struggle in almost every domain, and the disabilities that’ve been inflicted on me make work difficult, but I think it meaningful to help others who are treading the dreadful path I’ve been on.

Digression (?): Increased school skepticism because of exposure to said system

I suspect the same self-advocacy dynamic applies to K – 12 education, though not as much as it does to healthcare, in that a negative school experience is less likely to be fatal. Still, as a parent, you need to check to make sure your kid is actually being taught something useful—which is one (of many) reasons I think a charter/voucher system probably better than the existing system, which lacks any competition or external incentive for improvement. Maybe parents have always needed to check to see if your kid is learning anything, but the problems seem to have gotten worse in an era of “equity,” which often seems like a synonym for “teacher not trying, students not trying.” Many education schools have adopted an explicitly political orientation and work on political indoctrination rather than, you know, how to read, write, or do math. We’re seeing some political response to the increasing politicization of schools: Arizona, for example, now offers $7,200/kid in vouchers, so we should get some data on vouchers over time. In New York City, charter school students appear to outperform non-charter students—but that’s the sort of thing that only appears in certain venues, not others.

 I taught college for many years, and students often said they did no or little writing in high school. Even in their other college English classes, students would sometimes say they did little reading analysis or writing. “What did you do?” I’d ask. They’d sometimes say things like “discussion” or “movies” or “presentations.” A significant number (not all!) of teachers and professors don’t seem to be trying to impart reading and writing skills. I’ve heard some professors literally brag they aren’t! I’d like for many institutions to work better, including schools and medicine, but here we are. In the absence of adequately functional systems, individuals are often left to do the best we can with incomplete and/or inadequate guidance. 

Skepticism towards schools seems to be growing—and fueling the charter / voucher school movement. The usual culprits are COVID, which introduced a lot of parents to Zoom school and what teachers were up to all day, combined with what you can call wokeness, or the “social-justice left,” or whatever one might want to call it, which is not very concerned with imparting the skills and abilities people need to succeed in the world and to live meaningful lives.

I can’t speak to students’ math or similar skills, but articles like “Americans have poor math skills” are common. In most school districts, teachers unions dictate that pay be based on seniority only, not skills, and that pay be the same in all subjects, despite the fact that people with math or computer science skills have very different economic possibilities that people without those skills. We see the results. The Internet is simultaneously, and dangerously for the existing system, democratizing education and making it easier for families interested in something better than the legacy school system to find one another. More of them appear to be doing things like pooling resources to hire a teacher or set of teachers to form smaller pods to provide education. Vouchers should help with such efforts. We’ve had a long period without experimentation in terms of school structure or instructional design, but technology appears to be ending that period and opening possibilities for radically improved systems. The participants in the existing system are, sadly, fighting change rather than trying to substantially improve outcomes.

The classic book on institutional dysfunction is Exit, Voice, and Loyalty. For the vast majority of people, there is no true or meaningful “exit” from the healthcare system. That was also, for a long time, true of the public school and college systems, but that’s becoming less true over time, and yet those systems don’t appear to respond to the environmental changes around them. We see examples of hypocrisy pop up regarding existing participants; to cite one example, the president of the Chicago teachers union sends her kid to a private school, apparently so that he can have “a curriculum that can meet his social and emotional needs.” I’m tempted to comment further on this, but it speaks for itself. Having spent a lot of time with recent graduates of public school systems, and having talked to them about their experiences, I think there’s a lot of possible improvement that wouldn’t even be that hard to accomplish—if enough people want to accomplish it. Same with healthcare.

Expertise and ability are not evenly distributed

I was reading a conversation between Tyler Cowen and Patrick McKenzie (true name: patio11), and the latter described his experience running VaccinateCA:

In January 2021, a ragtag group of technologists spun up a volunteer effort to fix some of these issues with the rollout, beginning with the State of California’s lack of a website listing where one could get vaccinated. Within months they created and operated the shadow data infrastructure for the US vaccination effort.

It’s fantastic that the ragtag group of technologists decided to fix an important problem. It’s depressing that the nominal experts who were supposed to be addressing said problem couldn’t address said problem; I’m reminded of Tanner Greer’s assertions that:

America was once a place where institutional capacity was very high. Americans were a people with an extraordinary sense of agency. This is one of the central reasons they transformed the material, cultural, institutional, and political framework of not only the North American continent, but the entire world. That people is gone. The social conditions that gave the Americans their competence and confidence have passed away. Where Americans once asked “how do we solve this?” they now query “how do we get management on my side?”

Greer’s linked essay is great and you should read it, because it’s great and because it ties into everything I’ve been writing about the healthcare system. If you have an even slightly complex, slightly unusual, slightly multi-faceted, or slightly weird problem, then you are going to need, if not an extraordinary sense of agency, then at least a powerful sense of agency. Without that agency, there is a reasonable chance that you’ll have outcomes that range from “lower quality of life and worse healthcare” to “death.” If I’d listened solely to my original oncologist—who is working at the Mayo Clinic, a prestigious institution well known for its cancer care!—I’d probably be dead, instead of writing this, and Bess would be lonely. I’m not a genius, but it is becoming more apparent to me over time that, as McKenzie argues, a lot of people in high-status, high-prestige institutions aren’t necessarily great. His efforts in the form of VaccinateCA are arguably the rare victory of agency and competence over ineffectiveness and the effort to get management on one’s side. In the conversation with Tyler, he puts it this way:

There’s a thing that I would have put a high probability on prior to VaccinateCA, that VaccinateCA increased my credence on, which is that relative to credentialed talent in institutions, like — throw a dart at the dartboard about it. Let’s say county health departments, for example. They are fully educated in their field. They are credentialed. There’s a democratic process that ultimately backstops the county health department.

Jay Rando, person on the internet: “Can’t we be better at important facets of pandemic preparedness given, hmm, two to six weeks versus a county health department that is prepared for exactly this problem for their entire professional career?” Yes. Straightforwardly, yes. [laughs]

That is the thing I would have believed in 2018, but now I have an existence proof of. [laughs] Now, the work of county health departments continues to be important, et cetera, et cetera. I do want to eventually be able to make coalitions with people who are necessary to achieve impact in the world. Part of being able to make coalitions implies not throwing them under the bus all the time.

But it is extensively underrated how effective nonspecialists can quickly come to be, how spiky talent is distributed, and how the internet can act as a force for bringing together the right spikes for that in a very fast fashion and creating leverage good with it.

I’m not credentialed healthcare talent in an institution. In fact, my main educational “credential” is a masters in English, which is a kind of anti-credential. Bess is a doctor, but an emergency medicine doctor who doesn’t know a huge amount about oncology. I think both of us, however, have learned a certain skepticism regarding institutions, especially “prestigious” ones (outside of the hard science departments, the expensive, highly exclusionary universities aren’t looking so hot right now, despite their giant endowments). Maybe there’s a genetic-cultural component to it: both of us have grandparents who either barely escaped the Holocaust or went through it. Many of the people during that time period who were overly accepting of what institutions said and did died for their incorrect views. The ones who evinced a certain amount of skepticism were more likely to do everything they could to get out (“get the fuck out,” or “GTFO,” in modern Internet parlance).

Those emails I’m getting from other people suffering head and neck cancers, and cancers more broadly, is also an existence proof that I’m not the only one facing the problems I’ve been facing. There is, granted, an element of selection bias in the people who’ve been emailing me: the people getting great guidance from their surgeons and oncologists are probably less likely to reach out to Jay Randos like yours truly.

I tweeted to patio11 about these issues and he replied, “There’s alpha in caring and one can simply choose to care, whereas that is deeply not simple for systems (or people embedded in systems) to do.” If you are a Twitter person, patio11 is a great follow, I want to add. I think most doctors do care. But how much? And to what degree? How many are burned out, due to the kinds of issues I address in “Why you should become a nurse or physicians assistant instead of a doctor: the underrated perils of medical school?” I wrote at the start of this essay that I’m not a radical medical skeptic. Skepticism and cynicism are sometimes warranted, but sometimes not; to cite one example, I’ve been told by many people, usually darkly, that pharma companies only care about money. I don’t know, maybe that’s true, but do they care about money any more than any other company, or industrial sector? Don’t the vast majority of people do the vast majority of jobs for money? I care about money! I’ve also met and talked to people in pharma companies, most of whom prefer being rich to being poor (who doesn’t?), but most of whom also do want to help people.

So while I’m not a radical skeptic or radical cynic, and no one in the medical system is hiding secrets about how fruit juice or protein or roots and berries will cure your cancer or mine, you should take away from this work that importance facets of your healthcare may be better supervised by you and your family than by some of the people who are fully educated in their field and who are fully credentialed, and it is extensively underrated how effective nonspecialists can quickly come to be. I am a nonspecialist and so far I think zero of the people who’ve emailed me about head and neck cancers know about petosemtamab (the drug that’s been keeping me alive). Which means their doctors aren’t telling them! Which in turn means their doctors probably don’t know. The people who’ve been emailing me haven’t been told that UC San Diego Medical Center is among the top places for head and neck clinical trials; it’s the only active site with petosemtamab in the United States as of this writing. That’s a huge deal. The top clinical trial centers in the United States right now are UCSD, MD Anderson Houston, Memorial-Sloan Kettering in NYC, Dana Farber in Boston, and the University of Chicago. In my view, every head and neck cancer doc in the U.S. should know these (apparent) facts really well. Most don’t. Jay Rando sitting in an apartment in Phoenix does know this, however. I’m trying to leverage whatever talents I have—paltry in comparison to patio11!—in a fast fashion and create level to do good with it.

So what do you, if you’re in a similar situation?

The fundamental question regarding healthcare might be the one I mentioned above: “How do you know what you don’t know?” And I don’t think there’s a great answer. 

Bess is going to write a series of essays on what questions to ask when navigating a hospital stay or doctor visits, but, until then, her recommendation is that you regularly ask: “What’re my other options?” “Are there other options?” and “What resources can I use to look into them?” As I mentioned earlier, what works for most patients may not for you; physicians rarely intend to conceal information, but something important may not be top of mind, especially if one approach works for the vast majority of their patients, or you fall outside their average demographic. In the case of the PEG tube, for example, the doc might’ve been thinking that the problem was solved when one floppy tube was exchanged for another. The floppy tube is used for the majority of older patients, who are the majority of cancer patients, which is why they usually use the floppy tube.

“What’re my other options?” might’ve triggered a conversation and made the low-profile tube come to mind. Asking what resources you can use to look into your problem will also help keep you away from the crazier parts of the anti-science internet, while giving you an opportunity to research your diagnosis and develop new questions to ask. Being a patient is a skill in its own right, and one that most patients learn on the job. I’ve learned entirely too much about how to be a patient, and I’ve learned that self-advocacy is even more important than I’d thought, and sometimes a tricky social dance. Most people probably aren’t friends with doctors, and yet “having medical friends or family carefully watch out for and advise you” is not scalable or, for many people, practical. I’m identifying problems without knowing the solutions.

Despite those struggles, lately, I’ve been fortunate enough to get into a pattern of commuting to California for treatment and the treatment being sufficiently effective that Bess and I aren’t continually struggling with crisis after crisis—and trying to distinguish what’s a possible crisis versus a true one: it’s not always easy to tell. This pattern means I’ve not had as much to relay to friends and family, since crises and catastrophes—change, broadly considered—make great stories; hanging out with Bess and writing and making dinner may be satisfying to live, but they’re not satisfying to hear about.

Bess is reading a book called The Science of Storytelling by Will Storr, and Storr doesn’t recommend recounting minute, day-by-day things (mundane life: “… then I went to the store…then I chopped an onion… watched a video about Tesla’s struggle to get a sufficient amount of lithium and nickel to propel the electric car future…”). Storr says that “Change is endlessly fascinating to human brains,” (11) while stasis is not. To his mind, storytellers “create moments of unexpected change that seize the attention of their protagonists and, by extension, their readers and viewers” (13). We know what Storr means: a man rushes through the door holding a pistol, a beautiful woman disrobes, blood gets spit up, the cancer treatment works, etc.

I’m trying to have fewer of these exciting (read: negative) changes. I’m trying to find a new normal that’s as positive as possible. Experience has taught me to be on edge, however. If I’m not watching out for myself, and if Bess isn’t watching out for me, no one is.

Beware.

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

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* Both Poor Charlie’s Almanack and Martin Gurri’s book are published by Stripe Press. If you’re even slightly interested in the world and ideas, you should keep a close eye on Stripe Press, and read the books it emits.