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.
Three weeks ago, Bess and I noticed what we assumed to be three large whiteheads on the right side of my neck. “Weird,” we thought, “but the petosemtamab is provoking an acne-like rash, and whatever that is, since it looks like acne, it’s probably part of the rash caused by the drug.” I’m sensitive to growths on my neck, given that there are four or more tumors in there, and I’ve received radiation on it, and it’s been operated on multiple times. My range of neck motion is maybe 30% of what it was before cancer. Anyway, Bess and I talked to Dr. Sacco, my oncologist at UCSD, about the apparent whiteheads before the last petosemtamab infusion, and Dr. Sacco gave Bess the go-ahead to lance the whiteheads with a sterile needle.
A procedure! ER docs like Bess love procedures. She once did a thoracotomy, which requires the doctor cut through the patient’s fourth and fifth intercostal space, spread the ribs with a “rib spreader” (it is what you think), and use their hands to manually pump the heart. In movies and novels, it’s always the villain who wants to hold someone else’s still-beating heart in their hands, but in real life sometimes the heroes get to do it. Anyway, this procedure was less involved. Bess cadged a needle from an appropriate source that’ll go unnamed here and gleefully lanced me the day after we saw Dr. Sacco, cackling the whole time about how “she who wields the sword, has the power.”* I was afraid but did not die, though a bunch of gunk flowed out when Bess massaged the area after the lancing. Bess didn’t know precisely what the gunk was. It seemed thicker, more copious, and less odorous than would be expected from a small abscess. Whatever it might have been, it was out and we hypothesized that that was probably good. The experience was moderately painful, and I tried to think about other, positive things, like mild sun on the beach, or a viewquake, or nutritious-yet-tasty foods like peanut butter.
As you’d assume from a lifetime of imbibing competently created narratives, I am not in fact introducing the idea in the previous paragraphs only to let it peter out. I more or less successfully focused on matters other than my neck until a week from last Friday night, or, more technically, Saturday morning, when I woke up at 4:00 a.m. I went through the usual drink-water-and-hack-up-mucus drill, which is unpleasant but also now a consistent part of my life, and I was getting ready to inject a small amount of nature’s sleep aid into my peg tube when I reached up to scratch my shoulder and felt something wet and slimy.
Even my sleep-addled brain registered “wet and slimy” as notable. “Shit,” I thought. “What’s that?” Wet spots out of place (heretofore known as WSOP) are often medically ominous. In the bathroom, I flipped the light on, annoyed that I was probably destroying my ability to get back to sleep, but I also saw hummus-like goo along my right shoulder and neck. I understood that there was almost no way the WSOP could be hummus, which has never dripped on me from the ceiling; to enjoy hummus, I’ve always had to work for it, and I’ve never had it, or chocolate, or peanut butter, drip spontaneously on me, or from me, for my own delectable satisfaction.
“Whatever that is, it can’t be good,” I thought. I went to the bedroom and woke Bess, but I mixed up the order of things I told her: instead of saying: “I am okay, but can I show you something?”, like I ought to have, I said: “Can I show you something?” Seeing her go from “sleepy” to “alarmed” in the space of my sentence, I properly added: “I am okay.” Considering how quickly she jumped out of bed, I don’t think she believed me. She’s highly skeptical of anything that comes out of a patient’s mouth (or mine), in the manner of most ER doctors. Doctors hear too many medically implausible or impossible stories. She followed me into the bathroom and examined the WSOP running along my neck and shoulder, and she agreed that that couldn’t be good. Learning that she too thought that that couldn’t be good made me feel better about my medical judgment., but not better about the actual situation. Though it couldn’t be good, Bess also couldn’t say exactly what it was (useless ER doctors). It wasn’t fluid like pus, and it didn’t smell like necrotic tissue. It also, thankfully, wasn’t bleeding, or squirting or spurting or any other number of alarming gerunds that would have required a call to 911. She called upon her considerable medical prowess to confirm that 1. there was a small hole and deduced that 2. the small hole was where the substance was coming from. I felt reassured.
She pressed on the area around the hole without warning, also in the manner of ER doctors, to see if more would come out. More did. The mystery was at least partially solved. Apart from the hole, the right side of my neck had also been getting steadily redder over time, and we couldn’t help noticing that the redness seemed to have accelerated. Yet I was breathing, didn’t have a fever, and wasn’t showing any signs of septic shock, so a 4:00 a.m. ER trip wasn’t merited. We cleaned up the WSOP goo that had erupted from the side of my neck and went back to bed. Once we’d determined the need for immediate, emergent medical intervention wasn’t necessary, the next-best clinical step was “ignore it and go back to bed.” We’d look again in the morning.
Saturday morning, we saw that the goo had continued to leak all over me in the night. I’d gone from the general “feeling bad” that I’d been suffering to “feeling totally awful, as if I was being colonized by some alien organism.” The hole was still there and the skin around it had gotten redder and angrier, which made me think I’d have to go the ER despite not wanting to. The bottom half of my face was hideously swollen, too. Choose your animal analogy: rabbit, chipmunk, bulldog. Bess assumed a skin infection. I was wondering: “Why does this shit always happen to me on the weekend?” The peg tube has spontaneously come out of stomach twice, and both times on a Saturday, necessitating ER visits when interventional radiology (IR) wasn’t readily available to put a new tube in the hole. Going to the ER is expensive and time consuming, and it’s where the sick people are.
Bess tried to contact UCSD’s oncology department, but, it being Saturday, no one was home, so she tried ear, nose, and throat (ENT). Got a resident! He said the hummus-spewing volcano might be a necrotic, infected lymph node, and as soon as Bess heard that she realized that that read could be right. If the problem was a necrotic lymph node, that also means an abscess running deeply and dangerously into my neck was less likely. The resident asked us to send pics and said he’d call his attending, Dr. Califano,** and get back to us. Bess took a bunch of pics in which I look close to as hideous as I’ve ever looked.
Hours passed. Bess and I debated going into the ER despite having already begun the grinding of the medical gears. A CT could rule out a deep abscess, and I was feeling increasingly bad. But going to the ER sucks even if you’re being paid to work there, and it sucks worse as a patient paying to be there. Around 2:00 p.m., we got antsy and Bess called the ENT back. The resident picked up and said he was about to call us back—a likely story— to say Califano agrees that it’s likely a necrotic lymph node surrounded by a raging skin infection and that I should start an antibiotic called Augmentin.
We didn’t manage to acquire the Augmentin until 6 p.m. that night, and I injected it into my peg tube right away. By Sunday morning, I was feeling better and the swelling had declined some. Despite the experience being bad, it probably would’ve been worse if it’d happened Tuesday, when I was scheduled to fly to San Diego. I was being infused with petosemtamab on Wednesday and then, conveniently, seeing Dr. Califano for a repeat biopsy required by the study. There was (and still is) an enormous tumor growing out from the left side of my neck anyway, so I figured it ought to be easy to punch.***
“Easy,” I read in the preceding paragraph. “How much of the cancer and treatment experience so far has been easy?” I’m not a believer in fate, and yet I superstitiously felt like I was whacking Fate with a rolled-up magazine and daring it to bite me. (For once, Fate did not bite me, and the biopsy was in fact easy.)
With the infection identified—and the hummus-like WSOP determined to be whatever goo makes up an angry lymph node—I also understood why I’d been so torporous in the preceding weeks. I kept getting up absurdly late and being unable to function for hours. At most I’d have a few hours of relative energy. I’d berate myself and say: “This isn’t you. This isn’t like you. Who are you?” And then I’d sit in an exhausted haze instead of doing that which needs to be done. I read an inspiring book called Grant’s Final Victory: Ulysses S. Grant’s Heroic Last Year (you might’ve heard it alluded to in the Daily Stoic podcast), and Grant appears to have died from a squamous cell carcinoma of the tongue, caused by cigars. Grant spent much of that year writing his memoirs, hoping they’d provide financial security to his family. He and I are unalike in many ways, but this we have in common.
Grant wrote with a pen, I write with a Kinesis Advantage 360 keyboard featuring Box White switches, but the basic thrust of trying to write a memoir in hopes that it helps those who come after is similar. I get, too deeply, this problem:
Of the doctors, at this point the microbiologist and surgeon George Shrady spent the most time with Grant. He tried to keep his visits brief, because he sensed how much Grant wanted to press on with his daily writing.
Doctors back then and doctors today suck up a damned lot of time! Fortunately, my personal physician is also my best editor and reader. She is in fact reading this over my shoulder right now, as is her wont.
Anyway, Grant was worse off than me in many dimensions, and yet his writing example is one I need to better follow. The infection took a lot out of me, and Bess speculates that it was an “indolent” infection. My ears perked when she said that, because “indolent” typically means something like “wanting to avoid activity or exertion; lazy.” I’d been feeling indolent for weeks, but I’d not known that bacterial infections could also be lazy. But, ah-ha, there is a second definition! “Medicine (of a disease or condition) causing little or no pain. (especially of an ulcer) slow to develop, progress, or heal; persistent.” The infection caused little pain and didn’t progress much, thus allowing it to linger and sap me of vitality.
Being ill makes me feel like there’s always something: surgery, chemotherapy, travel, and now infection. Or maybe I should add: “and now Augmentin,” because the Augmentin is doing bad things to my stomach and digestive tract. Better than death but still frustrating. At the end of Tom Wolfe’s novel The Bonfire of the Vanities, Sherman McCoy, former bond trader and master of the universe, protests to reporters that “I have nothing to do with Wall Street and Park Avenue. I’m a professional defendant. I’ve undergone a year of legal harassment, and I’ll undergo another.” I’m now a professional patient, which is to say a professional sick person. As of October 20, I’ve undergone a year of medical harassment / treatment, though I’m unlikely to undergo another. I’ve been conditioned by experience to always expect a new problem. Perhaps the most recent is Augmentin causing a fungal infection in a place where one really does not want a fungal infection.
The preceding paragraph also helps explain why travel is no fun. Friends have asked if I want to do a dream vacation. I see where they’re coming from, but until recently I was relentlessly exhausted by surgery, chemotherapy, and infection. I’m doing somewhat better, but I still feel on the verge of catastrophe. Weight is part of it: I’ve lost around 40 lbs and worry about starvation. That is not a joke. Most of my calories are injected into my peg tube, and I “eat” from pouches of Liquid Hope. The TSA won’t let Liquid Hope pouches through airport security theater, so I have to check them in a bag. If I show up somewhere and my bag—containing the food I have to eat, the syringes I have to use to inject it, and so forth—doesn’t, that’s an immediate crisis. I can’t buy peg-tube food in a grocery store. If I don’t have, or lose, medications like antibiotics when I need them, that’s a crisis. I don’t know what the next potential crisis might be, but I want to avoid it. Acquiring Covid on an airplane or in an airport could result in a crisis. Some opportunities, if they aren’t seized in the moment, are forever foreclosed. I don’t want to sound boring, but a lot of my life entails trying to think a little ahead of health problems. For me, the best days are ones with maximum energy and minimum problems. Ideally, ones where my lymph nodes don’t explode. I hope to have more of those, before the end.
* Okay, this didn’t actually happen, but it’d be funny if it had.
** I keep mistyping his name as “Dr. California.”
*** As in, punch biopsy. I’m not suggesting that Dr. Califano was going to punch me in the neck with his fists. He seems like a lover, not a fighter, but I can’t be sure, and will try not to elicit violence from him.
“Nurses Die, Doctors Fall Sick and Panic Rises on Virus Front Lines: The pandemic has begun to sweep through New York City’s medical ranks, and anxiety is growing among normally dispassionate medical professionals” is congruent with what I have been told privately, and if it’s happening in New York (and Seattle) today, it will be happening wherever you are in 10 days. The gap between hospital administrators and doctors seems to be quite wide, with the former not having sufficient skin in the game. Ordering doctors, nurses, and others to work sick is insane, because that’s how medical workers are going to keep spreading the virus to themselves and to their patients.
Medicine has a “work sick” culture that has struck me as insane since I first learned about it. That culture needs to end and now is an excellent time to end it.
A reader of “Why you should become a nurse or physicians assistant instead of a doctor: the underrated perils of medical school,” asks, though not quite in this way, what a better doctor education system would look like. It’s surprising that it’s taken so long and so many readers for someone to ask, but before I answer, let me say that, while the question is important, I don’t expect to see improvement. That’s because current, credentialed doctors are highly invested in the system and want to keep barriers to entry high—which in turn helps keep salaries up. In addition, there are still many people trying to enter med school, so the supply of prospective applicants props the system up. Meanwhile, people who notice high wages in medicine but who also notice how crazy the med school system is can turn to PA or NP school as reasonable alternatives. With so little pressure on the system and so many stakeholders invested, why change?
That being said, the question is intellectually interesting if useless in practice, so let’s list some possibilities:
1. Roll med school into undergrad. Do two years of gen eds, then start med school. Even assuming med school needs to be four years (it probably doesn’t), that would slice two years of high-cost education off the total bill.
2. Allow med students, or for that matter anyone, to “challenge the test.” If you learn anatomy on your own and with Youtube, take the test and then you don’t have take three to six (expensive) weeks of mind-numbing lecture courses. Telling students, “You can spent $4,000 on courses or learn it yourself and then take a $150 test” will likely have… unusual outcomes, compared to what professors claim students need.
3. Align curriculums with what doctors actually do. Biochem is a great subject that few specialties actually use. Require those specialties to know biochem. Don’t mandate biochem for family docs, ER, etc.
4. Allow competition among residencies—that is, allow residents to switch on, say, a month-by-month basis, like a real job market.
There are probably others, but these are some of the lowest-hanging fruit. We’re also not likely to see many of these changes for the reason mentioned above—lots of people have a financial stake in the status quo—but also because so much of school is about signaling, not learning. The system works sub-optimally, but it also works “well enough.” Since the present system is good enough and the current medical cartel likes things as they are, it’s up to uncredentialed outsiders like me to observe possible changes that’ll never be implemented by insiders.
* “The Spiritual Shape of Political Ideas: How it is that we once again find ourselves rooting out sin, shunning heretics, and heralding the end times:”
Our social and political life is awash in unconsciously held Christian ideas broken from the theology that gave them meaning, and it’s hungry for the identification of sinners—the better to prove the virtue of the accusers and, perhaps especially, to demonstrate the sociopolitical power of the accusers. Moreover, in our curious transformation from an honor culture into a full-fledged fame culture over the past century, we have only recently discovered that fame proves just as fragile as honor ever was, a discovery hurried along by the lightning speed of the Internet.
I’ve long said in private that the religious influence on American culture remains much stronger than is often supposed. That strain is particularly strong, though rarely acknowledged, in modern feminism.
* “Hospitals Are Robbing Us Blind: Forget Obamacare. The real villains in the American health care system are greedy hospitals and the politicians who protect them.”
* “The spectacular rise and surprising exit of a Hollywood executive: Richard Nanula had big jobs at Disney, Amgen and Miramax. Now he is alleged to have filmed sex scenes with porn actresses” is not that interesting, except for one thing: “Saint told AVN that she had her attorney make sure that the scene was posted to St. Clair’s website to legitimize the shoot.” So it’s illegal to buy or sell sex… unless it’s being taped. I think Richard Pryor observed that it’s odd that it’s legal to have sex and legal to buy things but not legal to buy sex.
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