Category Archives: Personal

Stoic philosophy, finding a meaningful life, and the cancer treatment struggle

September 18, 2023 By in Essays, Personal Tags: , , 4 Comments

An essay in honor of me appearing on Ryan Holiday’s The Daily Stoic podcast.

If Marcus Aurelius got cancer, I like to think he’d be reasonably stoic about it. Since my tongue cancer diagnosis, I’ve found myself reaching for his and other stoic philosophers’ work as a companion to adversity. You’ll see stoic ideas threaded through the essays my wife and I have been writing about my fatal cancer diagnosis: “Every day I’m trying to make a good and generative day, and I remind myself that there are many things I can’t control, but, as both Frankl and the Stoics emphasize, I can control my attitude.”

One way to see the virtues of this attitude is by process of elimination: What’s the alternative? Wallowing in bad days in which I accomplish and achieve nothing important? Getting angry about things I can’t control, and things that will remain the same whether I’m angry about them or not?* Lamenting that which cannot be, and will not be no matter how much I wish it so? Nothing will bring my tongue back. Bemoaning my fate will not avert it (though I’m also not passively accepting fate: as described below, I appear to be in a clinical trial for a novel, promising drug that targets squamous cell carcinoma of the tongue). The likelihood of another decade of life is not literally 0.0, but it’s under one percent and would require a series of near-miracles via clinical trials. Bess and I are pursuing that path; realistically, though we’re doing everything we can do, “everything” will almost certainly not be enough to achieve substantially longer life.

There’s a term for the people who get excessively upset about things beyond their control: children. Or emotionally immature adults (a subject I know too much about). I’m not saying I’m an emotionless robot or that you should be one; when I got the news on July 21 about the fatal recurrence and metastases, Bess and I spent the weekend crying and talking and crying some more. Premature death is bad and efforts to prevent it are good; stoicism is not lying down and accepting whatever happens. During that weekend we felt a lot. During the past two months, we’ve felt a lot—including gratitude that I’ve made it two months, since, on July 21, it wasn’t clear that I would. But there is a time for feeling things and a time for doing things (Aurelius tells us that “you have within you something stronger and more numinous than those agents of emotion which make you a mere puppet on their strings”), and I try to focus on doing the things that need to be done (like writing this essay), because most good days are composed of doing things. As long as I have the health and energy to act, I will act. Bess seems to have figured out how to get a lot of things done while feeling things strongly, which seems like playing on a hard-mode setting, but what she’s doing appears to be nonetheless effective for her. She says she’s always operating in feelings mode—and has described herself as “a large sack of feelings on legs”—which initially baffled me, but now I see is just an integral part of who she is and how she is in the world.

In some obvious ways, life changes because of a fatal diagnosis. Treatment and treatment options become high priorities. Planning for the far future, like 401(k) contributions, are dropped. Many of the micro social jockeying and status awareness (or anxiety) almost disappears. The time horizon shrinks. When we’re young, most interactions that could lead to friendships, business opportunities, etc., assume that there are decades in front of both parties, and that assumption doesn’t hold for me. What I do with the time granted to me has changed. But some things remain the same: whether there are a few months left or six decades left, the goal is still to win the individual day in ways that are still congruent with a full life.

I’m deliberately vague about what a “good day” is, and what “winning” the day looks like, because different people are going to have different definitions. For me, right now, the good days are the ones I get to spend with Bess, and the ones I—or more often both of us—spend writing (we are each other’s ideal readers). The bad days are ones when I let the feeling of obligation guide me, or when I let up on what I’ve called the “moratorium on banalities,” or ones when I give up and don’t try to be generative. Either fortunately or through the direction of will, I’ve had few days when I’ve given up and not tried to be generative. Some days, I’ve been legitimately too tired or sick to act: recovery after the May 25 surgery took a long time. Chemotherapy is brutal and debilitating. A medication called olanzapine inadvertently made me sleep for like 14 hours, and then left me feeling like a zombie for days. But those are the exceptions. Given my proclivities and obsessions and training, the good days most often entail finish an essay, which is what I’m doing now.

The bad days are, for many people, probably more similar to each other than the good days. They’re the days when nothing generative happens. They’re the days when we don’t use space-repetition software to memorize. They’re the days that disappear in the fog of distraction, or a haze of smoke from whatever someone might literally be smoking. Or the days that disappear in other kinds of mental hazes caused by ingestible substances, or doom scrolling, or media consumption. They’re the days you check Facebook or Instagram or email too much, and then watch a little TV, and then it’s back to the social media grind, and then it’s dinner time, and then you’re tired, and then it’s bedtime.

I’m not saying people shouldn’t take breaks or vacations. Both are good and have their place; Marcus Aurelius wrote: “No retreat offers someone more quiet and relaxation than that into his own mind, especially if he can dip into thoughts there which put him at immediate and complete ease.” When Bess reads this part, though, she chimes in: “Clearly Marcus Aurelius didn’t have generalized anxiety disorder. Who are these people whose own minds offer them quiet and relaxation? How did they get these minds? Where can I get one? Can I have one right now?” But I have a very long break in front of me, the eternal break, and so right now I’m not much searching for breaks from writing. For me, writing offers some of Aurelius’s quiet and relaxation in the mind.

Fundamentally, stoicism tells us to control what we can control, and accept that many things are beyond our control. The squamous cell carcinoma is largely beyond my control; with the October 20 surgery and the radiation in December and January, it seemed as defeated as the Gauls by the Romans. I wish I’d investigated the strange and painful patch on my tongue sooner, but I can’t turn back time and so try to thrust that issue from my mind.

I can control aspects of what I do next, but not what everyone else does next. One doctor at a clinical trial center, for example, decided that I’m not eligible for her trial because my cancer hasn’t progressed far enough on chemotherapy, and I needed to “fail” it before I was eligible. That seems like a misreading to me (Bess and I will have a lot more to say on this subject in our essay about clinical trials), but her view is out of my control, and, moreover, we’d gotten traction with another oncologist at another medical center who was and is gung-ho.

When Bess and I have been pursuing clinical trials, we’ve tried to master the process despite knowing that we may master the process and yet not achieve the desired outcomes. Finding the maximally good clinical trial is literally a life and death issue, which is concomitantly stressful. The present likely outcome is death: recurrent and/or metastatic head and neck squamous cell carcinoma (R/M HNSCC) is almost always fatal, and current treatment options are palliative. So the stakes are very high and only part of the process is under our control.

Some new treatments might do substantially better, which is welcomed in a world where a “successful” treatment might help 30% of patients live a few extra months. R/M HNSCC is refractory to treatment, and the version infesting me grows particularly fast and, from the start, has shown “perineural invasion”— it occupies nerves and uses them to spread. My getting into one of the better clinical trials depends on those other people, like oncologists, primary investigators, anonymous drug company reps, or site coordinators.

It’s been challenging to navigate the bureaucracy and system. In a slightly different world, the trial I appear to be in now may have closed or rejected me. The first time Bess and I inquired about the trial I’ll be starting, it was closed to new patients—a seeming defeat. Then, we got word that the trial happened to have new spots open a few days before my appointment to establish care at that hospital. If it was still closed to me, I’d continue to work the issue, but I’d also try to accept with as much equanimity as I can what is and what can’t be changed. Bess has had less success with equanimity, and, while her own struggle with acceptance manifests as her single-mindedly working towards getting me into the right trial, now the question has shifted from the active “will I get into one?” to the passive “will it work, once the drug is infused?” Without as much to do, Bess doesn’t conceal well how much she struggles with accepting my fate, and what that means for her own.

I’m writing this particular sentence Sept. 8; in one critical way, it’s not been a great day: CT scans show some tumor size increases, despite chemotherapy. One hopes that chemo will shrink the tumors. But what am I going to do differently with this news? Nothing. I’m going to keep going, and doing everything I can to facilitate the trial happening, and to spend time with Bess. I’m going to keep trying to string together as many positive days in a row as possible.

I can’t control that I can’t chew, swallow, or speak normally, but I can try to mitigate these deficits as best I can—I can get speech therapy in an attempt to maximize my intelligibility and verbal legibility. I can write down the phonemes that most trouble me and attempt to find alternate ways to vocalize them. I can’t chew, but I can use a Vitamix or other blenders to create slurries that I can swallow and taste. I can practice the swallowing techniques that minimize choking and improve my ability to swallow foods that are more whole than they’d otherwise be.

Few of us are maximizing the things that are within our control, including me. We can and should try to do better. We should try to be more resilient.

Stoicism may be a philosophy, but it came before the science/philosophy split, and before “philosophy” became a byword for ineffective talkers. “Wordcels,” in modern Internet meme parlance. Stoicism is about living and doing, to the greatest possible extent. I was reading the Albert Camus entry in The Stanford Encyclopedia of Philosophy and came across this, about Camus’s The Myth of Sisphyus:

What then is Camus’s reply to his question about whether or not to commit suicide? Full consciousness, avoiding false solutions such as religion, refusing to submit, and carrying on with vitality and intensity: these are Camus’s answers. This is how a life without ultimate meaning can be made worth living.

I’m doing my best to achieve full consciousness and to carry on with vitality and intensity, most notably via writing and love. I can taste coffee again, which helps achieve a life of vitality and intensity. When I was closest to saying no to life and yes to the void, it was because I couldn’t achieve full consciousness or carry on with any vitality or intensity. For me, there is some minimum viable mind-body state that I dipped below in May and June. To get above that minimum again is good.

I was talking my sister, Rachel, and said to her a variant of what you’ve been reading in this essay: “I’m trying to be stoic about it: doing everything I can, while accepting that much is outside my control.”

“You’re doing a hell of a job,” she replied, “I wish I had the mental resilience you exhibit.” (Okay, this was via text, and I’ve added the periods.) She went on: “I told you this when I saw you, but it inspires me.”

“The alternative—falling apart, screaming, crying, I don’t know—what’s the point?” I said. “It just makes what days I have worse. Life goal is to have as many strings of good days as possible. Even if I don’t have a lot of good days, I want still to max out those I get.” (I use periods in texts, which I’m told makes me overly serious, or sarcastic, or otherwise off-putting.)

“It all makes sense, but it’s not common to be rational in a situation like yours. It’s admirable.”

“I don’t even know if it’s rational per se, so much as me trying to live the best life I can, given the circumstances.”

What’s rational? I don’t fully know. Philosophers tie themselves in knots trying to define it; most of us think we know it when we see it, but otherwise go about our days and lives, trying to take small steps towards a much better world.**

Given what seems like the virtues of stoicism, why is it so hard to implement for so many people—myself included? I’m not sure and the question is a genuine one that I don’t have an answer to. There must be something evolutionarily adaptive about the vicissitudes of random emotions, for the non-stoic reactions and the non-stoic life to be so common. Or maybe it’s counter-adaptive, but vestigial. If the Stoics had known about the amygdala, nestled inside the oldest part of our lizard-brain, responsible for our fight or flight response and a great deal of our fear and decision making, could they have given us some practical guidance as to how to overcome that ancient programming in our minds?

I don’t think stoicism is everything. I can think of some apparent downsides:

* Does stoic philosophy discourage totally feeling one’s emotions? I think there can be a trade-off here; there obvious counterargument is that stoics encourage the feeling of one’s emotions, but not being ruled by them. Feel what you feel, but don’t let feelings rule actions. It’s a subtle but important distinction. “What if you feel you should act on your feelings?” is a tricky one, especially when, sometimes, not accepting a situation can lead to actually changing it (as Bess and I are trying to do with the clinical trial).

* Aurelius doesn’t have a sense of science, the scientific method, or progress. It’s unfair to expect him to, because those notions don’t really get kindled until the Renaissance, but the invention of science is one of the greatest human achievements ever. That achievement occurred after the main stoics were writing.

* Letting stoicism become a dogma instead of a set of adaptable ideas and practices. That’s a risk of almost set of ideas, however, whatever their label.

On July 21, when I got news of the new tumors in my neck and lungs, I didn’t know whether I had only weeks to live. Given the speed of recurrence between the end of radiation in January and the hot PET scan in April, and the speed of the second recurrence between the May 25 surgery and the July 21 CT scans, “weeks to live” was plausible. I rapidly prepared Bess, my family, and friends for my possible demise. The presence of tumors in the lungs scared Bess and me.

Chemo had already been scheduled for July 24, and I went through with it; initially, Bess and I had hoped that chemo would sterilize any cancer cells that remained after the May 25 surgery. Instead, chemo morphed into that palliative effort to buy more time. Have we actually bought that time, or has chemo taken our money and run faster than a crypto scammer? I’ll find out in December, when the first set of CT scans after the clinical trial drug has had time to work—or not. So far, chemo hasn’t shrunk most of the tumors, though it’s likely kept them from growing too rapidly.

Marcus Aurelius died at age 58, of what the notes in my copy of Meditations characterizes as a short final illness of “only a week or so—and the exact cause of his death is not known.” Aurelius’s last entry reads:

Mortal man, you have lived as a citizen in this great city. What matter if that life is five or fifty years? The laws of the city apply equally to all. So what is there to fear in your dismissal from the city? There is no tyrant or corrupt judge who dismisses you, but the very same nature that brought you in. It is like the officer who engaged a comic actor dismissing him from the stage. “But I have not played my five acts, only three.” “True, but in life three acts can be a whole play.”

Early death was more common in the ancient world than it is in the contemporary rich world, and Aurelius, given how much time he spent at war, must have been particularly familiar with it. Yet even today, we are all, sooner or later, dismissed from the city. Yet I disagree that it matters not whether one lives as a citizen in the great city that is life for five years or fifty: fifty is generally better. But I am not going to get all five acts and so have to be content with the acts I’ve had.

The life goal is the same whether there are 30 days or 30,000 ahead, though the means may be differ. All of us know, intellectually, that, given the present level of scientific progress, we’re going to die. Given that, are we living the life we should be living? If not, why not?

I wrote that “Stoic philosophy is a companion to adversity.” Life is about handling adversity, which all of us face, in many forms. In that sense, stoicism is a companion to life.

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

And you might be interested in me appearing on The Daily Stoic podcast:

Ryan speaks with Jake Seliger about how his cancer diagnosis and having his tongue removed have changed his perspective on life, why he is prioritizing people much more highly than work now, how he is making every single minute count, what he is trying to communicate with his recent outpouring of creativity, accepting death, and more.

I listened to the podcast after I wrote most of this essay, and the podcast starts with Aurelius’s final meditation—a logical place to go, given the topic.

* Anger is almost always a bid for better treatment: used sparingly and appropriately it can work. All of us have seen the long-term results in people who overused anger and consequently become isolated by it. Sometimes business titans can get away with a lot of anger (Jobs, Musk), but most people can’t most of the time. A lot of us are aware of people who were raised by parents with anger problems. Children can’t defend themselves.

** Stolen from the tagline to Marginal Revolution.

Stoic philosophy finding a meaningful life

Life, swallowing, tasting, and speaking after a total glossectomy (meaning: I have no tongue)

September 9, 2023 By in Essays, Personal Tags: , , , 21 Comments

On May 25, I had a massive surgery that made me feel like I should be dead; the surgery left me without a tongue, without some teeth in the bottom of my jaw, and without important nerves in my neck. The surgery left my wife, Bess (we’d married the night of May 24, hours after learning that our surgeon had opened a slot on the 25th), in a panic. I was supposed to lose only half my tongue, but that is not what happened—this is Bess’s description, from her perspective:

The second, “salvage” surgery lasted twelve hours. Around hour ten, I started to wonder if Jake wasn’t ever getting off the table. When Dr. Hinni finally called me in to tell me they were able to remove all the cancer, I was elated. He got what surgeons call “clean margins.” Then Dr. Hinni explained that, because the cancer had grown in the short time between the April scans and May surgery, he’d had to remove Jake’s entire tongue, not just half—and with it, Jake’s ability to speak, to swallow, to taste—and the relief was replaced by horror. I blacked out for a moment. Jake wouldn’t want this. I walked into the hot night air and hyperventilated in the parking lot. We hadn’t even considered the possibility that Jake might lose his entire tongue. I wondered what I would have done if Dr. Hinni had called me with an update and asked me if they should move forward with the removal? I threw up in the parking lot and felt sick relief that they hadn’t.

In a panic, I called the one person I could think of: our speech pathologist, a woman named Jessica Gregor. She reassured me that, if the surgery hadn’t removed Jake’s entire voice box, he’d likely be able to speak after a fashion again. And swallow some liquids. She told me not to give up hope, and that the road would be long, but that not everything I feared and expected would come to pass. The surgical margins were free of disease. The cancer was gone. I needed to focus on that.

I spent the first night in the hospital sitting awake at Jake’s bedside, certain that he’d decide to die after learning the news. He didn’t want to live like this. It seemed entirely possible to me that he would just decide not to.

Going into the surgery, I knew that that Dr. Hinni (the ear, nose, and throat (ENT) surgeon leading the surgery) would do what he considered necessary to remove all cancerous tissue; he is one of the heroes of this saga, both for taking me as a patient in the first place and for squeezing me into his schedule on May 25. I was supposed to be operated on on June 7 or 8, though I doubt I would have made it that long. Even if I survived, how far would the cancer have spread in those two extra weeks?

Preliminary CT scans suggested that the cancer was, at most, a few months old, and those scans showed a tumor at the left base of my tongue, not the right. The approach to a unilateral one-sided mass is a hemiglossectomy—the removal of half the tongue—although Bess and I also knew that the cancer might affect my larynx, which meant a real chance I’d awaken without a voicebox.

My cancer moves unusually quickly: once Dr. Hinni performed a split mandibulotomy and flayed my neck open to assess the cancer, he found that the tumor had rapidly grown, leaving only 20 percent of the tongue tissue unaffected. Unfortunately, that affected 80 percent included both of the major tongue arteries. Without blood supply, tissue can’t live. So Dr. Hinni was forced to removed my entire tongue, or it would have become necrotic, dying and also killing the reconstructive “flap” made out of thigh tissue.

What follows is, as my brother Sam put it, a “devastating and horrific account, made even scarier because it’s real life.” But although the path was and is arduous, there have been real improvements: I can taste, I can swallow slurries, and there are moments of everyday life that pass for normal. I want to tell the truth as best I can, and that is going to include many dark moments. But read to the end: there is some light, and many people helped me along the way.

After she talked to Dr. Hinni and Jessica Gregor, Bess sought guidance online. She didn’t find much, and that’s why I’m writing this essay: to describe what the process of getting through the post-surgical moment is like, and to describe what the new reality is like on the other side. I’m dwelling on the challenges of the surgery and its aftermath to emphasize how hard the surgery is and how long recovery takes; I wasn’t prepared for either. But in seeking others’ experiences online, Bess wanted to know: What’s the range of responses like? What would not having a tongue be like—endurable, or unendurable? Would I yearn to end things, even if I technically survived? She found clinician opinions, but little from the people without tongues, yet It was the patient’s side she wanted to hear most.

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? Was Jessica Gregor right, or was she exaggerating the probability of me doing well in order to help Bess cope in the moment? Bess is an ER doctor, and she’s therefore suspicious of comforting medical optimism, having admittedly doled out some excess optimism she didn’t quite believe while eliding the worst of the bad news. Bess knew Jessica wouldn’t lie outright, but, in the course of the squamous cell carcinoma takeover, both of us have heard a lot of optimistic projections that did not turn out. Jessica said I’d speak and swallow, but how much and how well?

In the days following the surgery, the prognosis seemed grim to both Bess and to me. The “flap” that had been installed in my mouth registered in my brain as an alien presence, even though it was constructed from my own tissue (it’s made of tissue taken from the quadricep muscle, fat, skin, and hair—the hair keeps growing even after being relocated to the oral cavity, though I don’t feel the hairs). Imagine feeling like there’s a frog, or wad of fabric, wedged into your mouth all the time; you’d instinctively want to expel it, right?

The flap is made deliberately enormous at first because it loses bulk over time, and the goal is to eventually have a tongue-shaped mass of flesh in the mouth. The flap isn’t innervated, and so it doesn’t move, but the bulk is necessary for future speech and swallowing. In retrospect, the many hours and microvascular surgery required to place the flap is itself based on the expectation that it will help a patient regain function, since the cosmetic effects are minor unless someone is peering inside your mouth.

The flap is made of me, but it’s inert and insensate. But when I woke up from surgery, and in the weeks after, it set off alarm bells of “wrong” inside my brain. In the early days, my feeling-brain wanted it out of my mouth, however much my thinking brain understood its purpose. Flap challenges were on top of many others: I was swollen from the surgery and felt like I should be dead, despite being technically alive. I was a “pain person,” barely surviving on a steady diet of oxycodone and Dilaudid and Oxycodone and Tylenol and antibiotics. My body was riddled with holes and tubes: two drainage tubes from my left leg. Two drainage tubes from one side of my neck. A feeding tube down my nose (it was stitched into my nose). An intravenous (IV) line piercing my skin (it was replaced a few days after the surgery by a peripherally inserted central catheter (PICC) line—and I was awake for the placement). A tracheostomy tube let me breathe, since the post operative swelling would have otherwise cut off my airway above the tube, suffocating me, but the trache was also prone to clogging with mucous (of which I produced more because of the surgical inflammation and thicker because of post-radiation changes).

A catheter emerged from the tip of the penis, which is as horrible a sensation as you might imagine, and the taking out of it worse than it merely being in place. The surgical wounds weren’t exactly holes, but they made me feel less whole and less human. Twenty-seven staples crawled up my left upper leg, holding the skin together from where they removed my flesh to create the flap. Screws in my jaw and stitches in the flap, the lower lip, the chin, and the neck held the skin of my face and neck together.

In the first 48 or 72 hours—I can’t remember now—a nurse had to come in every hour with a “doppler” device, which looked a bit like a metal pen, and put it in my mouth to check the flap’s blood supply. It’s not common, but some postoperative flaps die because the artery feeding them blood doesn’t take. The flap can sometimes be saved surgically, if the problem is detected early enough.

Despite my run of bad luck, the flap maintained its blood supply and the surgeons were also able to drain a subcutaneous saliva collection that threatened the flap. I didn’t think I could go through another surgery. I could barely move, but within a day or two I could get up, with the assistance of a nurse, who would wrap me with a giant belt to make sure I didn’t fall over and die. Walking was a key part of the recovery, and so I needed to walk as much as possible despite the pain, the fatigue, and the general misery. Bess and my dad spent a lot of time in that hospital room. Apart from the flap surviving, the other key success of that period was me being able to walk, and not falling. My internal monologue—the interior mental voice that has accompanied me for as long as I can remember—shut off. I don’t remember precisely when it restarted, but I think it was around the 12th day.

Night might have been the worst: I was dependent on opioids to sleep but simultaneously aware of the cost of opioids. Mental fog is one cost. Constipation is another. To leave the hospital, I needed to be able to conduct normal elimination activities. I’d vaguely heard the term “suppository” before but had never wished to know more, until I had to use one. Each day seemed to bring its own horrors. Eventually, I had to conduct an impromptu “self-disimpaction” of the bowels. Nurses are apparently not supposed to engage in this medical act, so a few days after the surgery I found myself alone in the bathroom at midnight, caught between “going” and “not going,” and unable to close up shop but also unable to eliminate. I worried about the strain rupturing something. Somehow I got through. At the end I panted and sweated like someone who’d barely survived an ultra-marathon. In retrospect, I realize that although tube feedings tend to cause diarrhea in most people, I was not most people and should have been on a more aggressive regimen of stool softeners and laxatives to counteract my sensitivity to the constipating opioids.

Given what the post-operative process was like, I think it understandable why I was down on living. Besides living itself, I wondered: how would I make a living? A life? With the present being so dark, I couldn’t anticipate the future being much better. I didn’t want to disappoint Bess, or my family, or my friends, but I also felt I’d be in the hospital forever. And what would happen when I got out? I would be helpless. The gains that slowly began to accrue, like walking an extra fifty feet, barely registered. Bess cheered me on and walked along side me with an enthusiasm normally reserved for someone on the last mile of the NYC marathon. I couldn’t understand her excitement: 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:

WATER, CORN SYRUP, CALCIUM-POTASSIUM, CASEINATE (FROM MILK), MEDIUM-CHAIN TRIGLYCERIDES, (FROM COCONUT AND PALM KERNEL OIL), MALTODEXTRIN, SUGAR, CANOLA OIL, SOY LECITHIN, CORN OIL

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.

After 12 days in the hospital, I got released. Dr. Nagle—who’d made the flap—said that I didn’t need to stay and that the flap seemed to have taken. The release should have been sweet, but I feared going home, and I feared doing something wrong. Bess and I had been trained by nurse educators in how to clean the trache tube, how to suction the trache tube, to clean the suction device, how to replace the band holding the trache tube, how to deal with trache-related breathing emergencies, how to use a misting machine to keep the trache tube moist at night, how to watch for infection, how to change the packing dressing in the incision under my chin that helped saliva drain from the mouth, and whatever other essential skills we needed for me to go home. Adding to the complexity, although I was able to keep my vocal chords, the trache provided air below the level of my vocal chords, so I was unable to speak while it was in. Communication had to be done with a text-to-speech app on my phone, the MacOS text-to-speech feature on my computer, frantic hand gestures, or by writing on some type of pad. I had to keep taking antibiotics twice a day. The chin incision packing had to be changed twice a day. Despite Bess’s medical training, she wasn’t used to the chronic care of a trache or PEG tube, so both of us faced a learning curve. There were other medications I needed, now forgotten but then essential. I had a disturbing rash on what nurses euphemistically called my “peri area.” Doing anything wrong could lead to painful fatality, or infection, or other complications.

The first days home, I got numerous phone calls from seemingly everyone employed by the Mayo Clinic, and some from people not, like specialty pharmacies. Bess answered the calls and quickly began to sound annoyed: “Do you realize that Jake had a total glossectomy and can’t speak?” Yes, Mayo was aware. Yes, they had a department largely devoted to removing not just patient’s tongues, but their larynx and vocal chords as well. No, no one at Mayo considered how to handle this situation, despite Mayo’s large ENT patient population.

I got released, yes, but without a good food pump. It turns out that there are two common food pumps: a Kangaroo Joey Pump, which sucks, and I don’t know how it stays on the market apart from, I guess, FDA approval, and a Moog Infinity Pump, which is better, but seemingly wasn’t available at the time I needed it. If Bess and I had been smarter, we would’ve bought an Infinity Pump; instead, we didn’t get one until two weeks after discharge. There’s a long, hellacious story about the struggle to get a reliable food pump I could use, and then something approximating real food (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), but this essay is already too long and the process of getting what I needed proved miserably bureaucratic and difficult. It wasn’t Mayo’s finest hour. Before October of 2022, when a first surgery removed the first SCC tumor, I weighed around 175 pounds, which is slender but not skeletal for a guy who is 6’2″. I exited the hospital in June 2023 after that massive surgery weighing about 144 lbs. Two weeks after struggling to get any calories at all, and struggling with a barrage of appointments, I weighed in the 134 to 137 lbs range—so low that I was flirting with “death by starvation” territory.

On that 12th day after the surgery, I also walked unaided for the first time. I walked as much as I could, every day. I walked slowly, but I walked. I didn’t really notice me getting a little bit stronger day by day, but I’m told by Bess that I did. The darkness stayed with me; without Bess, I think I would have succumbed to it. She told me that, if I made that decision, she would understand, but that she desperately wanted me to stay, and to promise her that I would tell her before taking the path into the final dark. That I am here to write this shows I did not. But I was close. So close. I didn’t feel like I’d ever get better.

After maybe four weeks of being home, I got a “passy-muir valve,” which allows air to exit a trache tube but no air to enter. That was in preparation for me getting the trache tube removed. It also allowed me to breathe through my nose and mouth, bringing air to my vocal chords, which let me speak, after a fashion, again. “Practice speaking” is more accurate than “speaking,” but I began trying. Friends and family were astonished. My larynx hadn’t been totally removed, and my vocal chords were cancer-free, which gave me some opportunity to say some words. A lot of phonemes escaped me, but some comprehensible words escaped me too. A week or two after I got the passy-muir valve, I got a “cap” to put over the trache; I wore it consistently during the day, but coughing attacks made it hard to wear at night. It facilitated somewhat better speech. By mid-July, about seven weeks after leaving the hospital, Dr. Nagle pulled the trache tube out and put a bandage over the site. I’m apparently a fast healer, despite prior radiation (six weeks of adjuvant IMRT radiation to the tongue and bilateral neck to a dose of 60 Gy over 30 fractions, from Dec. 1 2022 to Jan. 13 2023: it, along with the initial surgery, was supposed to be curative), because within a few days the wound had closed.

In late July, Jessica stopped by our apartment, and she coached me into swallowing some ice cream:

Swallowing without a tongue is tricky. Do it wrong and whatever you swallow goes into your lungs, causing coughing and possibly worse. But when someone without a tongue, who hasn’t swallowed for two months, learns how to swallow again, the moment of swallowing includes a sense that something is going into the lungs, even if nothing is.

There’s a trick to swallowing after your tongue has been taken: you have to tilt your head back, initiate the swallow, swallow strongly and deliberately without hesitation, and then do a throat-clearing sound and motion. That throat-clearing sound and motion forces air up and out of the lungs, closing the epiglottis in a move called a “glottal stop,” which effectively closes off the airway and makes the esophagus the only option for food to travel through. If there’s any material thing in the way, like recently swallowed food slurry, then the air will also help that substance be routed into the stomach, not the lungs.

With Jessica lovingly, but firmly, insisting that I get over myself and knock back a shot of melted ice cream like a freshman at their first frat party, I successfully swallowed the ice cream slurry: 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, I tasted it. I tasted the ice cream. I was shocked. Anatomically, yes, I understood there are taste buds at the back of the throat and esophagus. I just didn’t expect things to taste almost normal.

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.

Rough, crumbly, and dry things aren’t any good, but anything that can be made into a smooth, pretty consistent slurry, I should be able to eat. Suddenly I’m talking with Bess about stopping by FnB (our favorite restaurant in Arizona, and conveniently down the street from us) to order food and blend it. We tried that too soon—I wasn’t ready yet—but will try again. That is the human struggle: to fail, to learn, and to try again. The universe is vast, cold, and indifferent, and it wants to eat you. But I’d like to eat, too. And being given the chance to do so again, when I thought I would go the rest of my life without flavor, is no small thing.

After that coaching session, Jessica did a “Fluoroscopic Swallow Study,” which essentially means taking an x-ray video of me swallowing, to see where the swallowed substance goes. The study confirmed that I’m not swallowing into my lungs, though, until I practiced swallowing for a month, every time I swallowed, I felt like I might be. The sensation that food is going down the airway, even when it’s not, made me wary of swallowing, but I kept doing it. You may sense a theme in this essay: things sucked, but I kept practicing even the things that sucked hard at the time, and, gradually, over time, things got a little better. If you’re facing a total glossectomy, get a speech-language pathologist (SLP). I don’t know how to evaluate the quality of SLPs, but they’ll make your recovery easier.

Since those first days of swallowing, I’ve managed to tolerate acids and salts better. Spicy is still hard, but even that is seeing some improvement. I over-indulged on sweets and am now building back up to savory foods. When I wrote the paragraphs quoted above, in August, I couldn’t yet deal with even pretty small food particles in blended slurries. Everything had to be blended smooth. Now I can handle some particulate matter, like imperfectly blended broccoli florets, or the rough parts of roasted sweet potatoes. I still have to blend, and I still wind up adding an absurd amount of water, but I can swallow. Despite taking months of intention and practice, I’m doing it. Love is a practice; so is swallowing, and walking, and writing, and many other things worth doing.

Unfortunately, the cancer was not gone forever and definitively returned on July 21, when CT scans showed around eight new, distinct tumors—four in the neck and four in the lungs. Those are almost certainly going to kill me; the slowness of the FDA in approving clinical trials and many other things means that the treatments that might be efficacious against recurrent / metastatic head and neck squamous cell carcinoma (R/M HNSCC) aren’t here.

The HNSCC hasn’t come from anywhere obvious; I have no known family history of cancer. I don’t smoke, drink heavily, or chew tobacco. The tumor was HPV negative. It seems merely unlucky.

I write this three and a half months after the surgery. Progress has been incremental but real. From walking in the hospital after the surgery to swallowing every day once I learned that I can, I’ve managed to slowly—agonizingly slowly—improve. I’ve pulled back slightly from the brink of the void, which I described in “On being ready to die, and yet also now being able to swallow slurries—including ice cream.” The ability to register taste seems to be improving, too. The darkness that clouded the hospital stay is still with me, but lessened somewhat by progress. Life, swallowing, tasting, and speaking are all worse than they were before the total glossectomy; to say otherwise would be both folly and untrue. To deny improvement would also be untrue, though. If you are contemplating the call of the void, you can always make that decision tomorrow, but that decision, made and executed today, cannot ever be unmade.

If you or someone you know have experienced the horror that is a total glossectomy, I don’t and can’t know whether your trajectory will be like mine. Each person is different, and how life will work varies based on age, initial condition when starting the surgical process, and other factors I can’t think of right now. I hope that, soon, personalized vaccines like Moderna’s mRNA-4157 become the standard-of-care for a first-line defense. If the FDA cared more about patients, and less about bad press from letting potentially deleterious treatments through the system, by now something like mRNA-4157 would probably be approved.

In this alternative world, after the first surgery in October 2022, my tumor would have been sent to Moderna for genetic sequencing. Moderna would sequence the tumor and then create a vaccine based on the tumor’s characteristics. The vaccine would’ve shipped to Mayo, and my doctor would have injected it into me three to six weeks after surgery. This strategy will likely dramatically reduce recurrences. One day, I hope for many fewer glossectomies than there are now. I missed that revolution and will probably die because of it. Hardly anyone cares about the patients dying for lack of effective treatments. I guess we’ll soon be dead and buried in the invisible graveyards, and not making noise to politicians.

Without Bess, I doubt I’d exist right now, and you’d not be reading this. For someone older—I don’t know exactly how old—a palliative approach may be better than the surgical one. The recovery would just be too hard. It’s difficult to write that, but life is full of difficulty, brutality, and unfairness. We like to pretend that we can live forever and that medicine can fix us, but, at current levels of science and technology, neither is necessarily true. We’re getting medical advances every day, despite FDA slowness and intransigence. Cancer, however, still maims and kills. I’ve been maimed, and soon I will die, but until then I can still write.

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

And if you’re living with the aftermath of a total glossectomy, please leave a comment or send an email, particularly if there’s anything I’ve omitted or forgotten to discuss. I’m really writing this for search engines; Bess turned to them and, as I said above, found too little about what life is like after the total glossectomy, from the perspective of the person without the tongue. Perhaps most people who have total glossectomies don’t live long, or long enough to write about it. I have some extra time and am compelled to write, so I thought I’d speak to my experience, and maybe help others in a similar situation. The path is very hard, but, for many people, there is a meaningful life at the far end.

Life, swallowing, tasting, and speaking after a total glossectomy (meaning: I have no tongue)
Despite two surgeries, radiation, and chemotherapy, I am for now still ticking.

Attachment is suffering, attachment is love:

September 1, 2023 By in Links, Personal Tags: , Leave a comment

“Attachment is suffering, attachment is love: After he dies, my husband wants me to not just survive, but thrive” is Bess’s latest essay, and it’s hosted at her new Substack. You should subscribe!

Turning two lives into one, or, things that worry me about Bess, after I’m gone

August 30, 2023 By in Essays, Personal Tags: , , 2 Comments

I’ve told Bess that, given the current circumstances, my job is easier than hers: all I have to do is die. She has the hard part; she has to live and figure out how to go on. Death’s severing of connections feels particularly acute for the people who are most attached to other people, and especially the person most wired into the person dying. Bess is most wired into me, and she’s also more anxious than me, such that I’ve been comforting her. Maybe this seems odd, for the person dying of cancer to be comforting the one who isn’t, but it works for us.

Last night, while I was sitting on the couch reading Paved Paradise: How Parking Explains the World,* Bess was holding my leg, weeping as a wave of anticipatory grief crested on her in the sudden, unanticipated ways it often seems to, and I observed that I’m facing my end with more equanimity than she is. She enthusiastically agreed, and at least I got her to laugh for a moment and abort the crying (though she’s welcome to cry as much and as often as she needs to).
What had started these tears was a realization that, if Bess has a hard time writing an essay after I’m gone, I won’t be here to help her organize it—a truth that, I keep reminding her, isn’t a good excuse for her not giving me pages now. But it’s not just editing that I won’t be here to do. A bunch of mostly overlapping worries haunt me, because I feel like Bess and I have gone long past “complementary skills” (though we do have those) and into “utter enmeshment that can only be broken with great damage.” In life I try not to damage Bess, and yet in death there’s little choice. I’m trying to find ways to preemptively comfort her and support her now, while I still can, so that she can call upon my love to help her through the coming darkness—but I still can’t choose not to die of cancer.

Over time, some couples grow into each other such that their minds partially merge; I read a spiritual dimension into this, but you don’t have to. “Grow into each other” is doing a lot of work in that sentence: words or phrases like “merging,” “conjoined minds,” “interdependence,” “co-dependence” (though without its usual negative or pathologic connotation), or, my favorite, “connected by an eternal golden braid” work too. Even before Neuralink allows brain-to-computer and eventual brain-to-brain interfaces, Bess and I know each other’s minds without a physical cable running between us, and so I’m worried that the impending loss of me will be like the loss of part of Bess’s brain. For most people, the loss of a spouse or partner is devastating.** For Bess, I fear the loss will be worse than average, and her recovery will be harder.

To be sure, I think recovery will happen for Bess, and that she’ll find love again (as I’ve instructed her to do, for her own sake), but I worry about complicated or prolonged grief. There’s an intellectual dimension of loss, too, because Bess so often thinks by talking to me. Some people think by writing, or walking, or sitting still and concentrating. Bess’s preferred thinking method seems to be chatter. She has friends and family she chatters with, but I’m her primary target. She’s almost physically hurt when I can’t listen to her ideas right then and there, in the moment. So I try to be open to listening as much as possible, though sometimes work or the need to execute my own writing gets in the way. Soon, it’ll be death that gets in the way.

These are some of the things that worry me:

* Writing and editing. I’ve been Bess’s writing coach and editor, particularly as of late. When Bess is writing, I’ve been telling her that, rather than getting in her own way, she can just write what she’s thinking. Whatever she’s thinking, she can write that down. Admittedly I find this statement and advice a little peculiar, because what does she write about if not what she’s thinking? Is she supposed to write what she isn’t thinking? That’d be a neat trick and if she can write what she isn’t thinking, I’d encourage it purely from a novelty perspective. I confirm that she can in fact write what she thinks, and that people will be interested in what she’s writing—or they won’t. No one is interested in everything. No piece of writing appeals to everyone. But Bess’s potential capabilities are enormous, and, if she can get out of her own way enough to execute, she’ll do great. A lot of what I do regarding encouragement is simply encouraging her to get out of her own way. Her process is like the bike-fall meme:

Bike-Fall

My job is to get her to stop stopping herself by putting that stick between her spokes. Who will do that job when I’m gone? Sasha Chapin is one answer, and he’s not the only editor out there. But the solution when I’m gone probably won’t be sitting on the couch with her or going on walks with her.

* Memory. I seem to remember things more, or better, or at least differently than Bess. Names of people or of places. Things we’ve done. Her memory is partially stored inside me. My memory of her is stored inside me, and by that I mean that I see her as others can’t, because of our long shared history:

But when Jake looks at me, he sees me at 25, showing up to our first date in a grey mini-dress, black boots and red lipstick. He sees me at 29 in a striped bra and panty set in our 35th story Seattle hotel room, pressing me against the cold glass. And he also sees me as I am now. I’m all these ages at once, as he is to me. Love isn’t just blind to ugliness, but to decay. Look at two 80-year-olds gazing at each other like teenagers and you’ll know what I mean. When I lose Jake, I’ll lose someone ever seeing me throughout all my ages again. I’ve said that parts of me will die with him, and I don’t just mean parts of my heart and the parts of my personality that act in relation to his. I mean entire eras of my life, all the views he was privy to, and therefore, much of my youth, goes as well. No one—even if I find love again one day, as Jake has urged me to do—will ever look at me at see me at 32, skinny dipping on a trip to Gunnison nude beach in New Jersey with a group of friends, laughing at how cold the water is under the sun of a hot summer day.

There are trivial things, too. The other night, we were watching the TV show Invasion (which is pretty good so far, and there should be more stories about alien contact, and more stories with hardware programmers as heroes), and there’s a character named Caspar. Almost all of you will probably have no idea what I’m talking about when I say that I joked to Bess that Kaspar Juul should be covering the alien invasion, with help from his sidekick Katrine Fønsmark. Juul and Fønsmark are characters on the Danish TV political show Borgen, which isn’t bad, but sadly the mothership never lands and no massive antenna dishes play major roles in the show. No one does any heroic programming. Still, it’s a show we watched a decade ago, and we’ve had so much time to build up this dense knowledge of each other.

* Ergonomics. Bess has had chronic problems with typing, because her arms hurt her. Looking closely at her, I see that she tends to contort herself like a circus performer or perch like a buzzard when she’s trying to write. She has a sit-stand desk but rarely stands. When she does stand (usually at my urging), she stands like a human flamingo, perched on her left leg with her right leg bent at the knee, which is pointing to the right, with the sole of her foot pressing against her upper inner left thigh. I believe, in yoga, this is called “tree pose.” Paula Tursi, our favorite yoga teacher from New York City, would be proud, but I don’t see how tree pose can possibly be ergonomic. To Bess’s credit, sometimes she switches legs. I encourage something more stable, but who will tell her to stand, and then tell her not to stand like a flamingo, when I’m gone?

Now that she’s been writing a lot, she’s been struggling again. So I helped her get and set up a Kinesis split keyboard. The split keyboard reveals some of her bad typing habits, like never typing with the pinky finger on her left hand. Now she sits with her elbows at a slightly greater than 90 degree angle. She’s got an external monitor. Adding these little things up seems to ameliorate many of her problems. She’s thrilled to be introduced to these tiny changes that seem second-nature to me. She says she’d’ve never discovered them on her own. She would have kept on suffering, like one of her patients too stubborn to see a doctor. I’m concerned about her extensor tendons. No one else will be, she says sadly, inciting more tears.

What other things do I know that Bess will need to know one day, and that I won’t be able to say to her, or help her with?

* Cooking. I do more cooking, even now, and Bess is too prone to forgetting to eat. She’ll not eat all day and then let pasta be dinner. To be sure, Bess can and does cook—she prefers to make elaborate, amazing meals, of the sort I can’t fully appreciate any more because I can’t chew, but she tends to ignore a lot of the day-to-day cooking that I’ve specialized in. She jokes that she brags about my cooking to her colleagues, whenever she hears someone complain about a spouse who doesn’t do their share of the housework.

“I know what you mean,” she’ll say. “Sometimes I get home after a shift and it takes Jake an extra 15 minutes to get dinner on the table.” Then she’ll sigh exaggeratedly. Another way our minds have merged: we both enjoy entertaining ourselves by sometimes inciting very minor agitation in others.
Since losing my tongue and ability to eat solid foods, I’ve evolved into making a lot of Instant Pot slow-cooker meals. The Indian slow-cooker cookbooks I’ve found are very useful.

When I was in the hospital recovering from the massive May 25 surgery, and then, when I first got home and could barely function, Bess later admitted that she barely ate anything because I wasn’t able to eat. Even though she knew I didn’t begrudge her, she didn’t want to eat in front of me, flaunting her ability to do a basic human action that I’d lost. And, besides, she didn’t have an appetite. She seemed to melt right along with me, losing 20 lbs over in a month. Only when I began cooking for her, and to blend my own food in a Vitamix, did she began eating. She said she felt like I was giving her permission to eat in front of me. And with me. I could only eat via tube.

And then there are beans. Bess was never a bean person: she didn’t love the smell or texture of canned beans, and making beans on the stove is too much a hassle and time commitment. She’s prone to forgetting whether gas stoves are on, though the excellent induction stovetop we’re using now reduces that risk. Plus, the induction stove doesn’t produce noxious indoor fumes like archaic gas stoves. On our first date, we were going to a movie, and she nervously confessed that she couldn’t remember if she’d left the stove on. Later, she told me that she struggled between two warring mental states: concern that I’d think she was crazy to think that she thought she was going to burn her apartment down, and concern that she actually might burn her apartment. In the end, lack of renters insurance motivated her confession. We turned around, missed the showing we’d planned, and checked her stove (it was off). But that was okay. Being a little scattered is one of her numerous charms. I’m getting off topic, because this paragraph started off talking about beans, but the point is that she didn’t love beans until I started buying from Rancho Gordo, which specializes in quality and heirloom beans (they also sell an amazing red popping corn); I was so enthusiastic that I signed up for their quarterly bean club. A friend calls me “bean man.” The Instant Pot cooks them fast. And they taste and smell better. Maybe they’re more nutritious, too, and they don’t have whatever chemicals are used to seal a can’s lining.

* Outdoor drying. The other day, Bess washed a new blanket. I suggested she leave it on the deck, since we live in Arizona and leaving wet garments or blankets outside will leave them rapidly dry, especially in the summer. She wanted to use the dryer instead and had to run it through three times, delaying her ability to go to bed. At the end she said she should’ve left it outside.

* Lifting heavy objects or opening jars: This is a standard male-female issue: I’m considerably better and more able to lift heavy objects and open jars, but, instead of asking for help, Bess often struggles and sweats then stares at me with wide-eyed wonderment when I casually pop open the jar. Sometimes I will please her by telling her that she loosened it for me. Mostly, I just like the way she looks at me as if I’ve returned to the cave fire dragging a mastodon behind me and she’s about to show her gratitude when we get under the deerskins.

* Gadget discovery: The Instant Pot, induction stovetop, and Kinesis keyboard have already been mentioned. I’d be remiss to miss the Zojirushi rice cooker, though. Perfect rice or lentils, every time, with no effort. One and a half cups water to one cup brown rice. One a quarter cups water to one cup green or black caviar lentils. It’s great. She’d have missed the sit-stand desk revolution if I hadn’t nudged her towards a sit-stand desk—which she doesn’t use in standing mode as much as she ought to, but I bet that will change.

* Sleeping at night. Bess is a bad sleeper and she sleeps better when she’s next to me. Five or six years ago, I discovered that reading to her in bed helps her fall asleep. I read her the entirety of The Deptford Trilogy and The Lord of the Rings, as well as multiple Elmore Leonard books (Get Shorty is the best one) and Lonesome Dove. I did all the voices, too, which sometimes made her laugh too hard to sleep. I can’t read Bess to sleep effectively anymore, but she says that being beside me helps her sleep. Even if she seems wide awake and busy near bedtime, if I say I’m going to bed, she’ll hop up and be under the covers, awaiting a cuddle before I’ve managed to get my shirt off. She likes sleeping next to me so much so that she resists sleeping in the office bed, despite me making more noise snoring than I ought to. She insists that Bose Sleep Buds completely solve this problem.***

* Love and affection. Bess thrives on both and I yield them up to her. Sometimes, if I want to let her feel like she’s had a little struggle, I let her think she’s forced me to yield them up, which gives her a sense of accomplishment.

* Geography. Thanks to the advent of universal GPS—a tremendous scientific and engineering triumph that almost no one steps back to appreciate today—geography sense isn’t as important as it once was, but Bess’s sense of direction is peculiar, and one might say close to altogether absent. Even with the phone speaking directions, she’s prone to missing turns or not knowing where to walk. I once asked her if she likes not having anybody else in the car because she’s just come to absolute peace with getting lost all the time. She didn’t even hesitate when she said yes. She calls me her GPS. She will never know which way is north.

* Medical questions. She’s done four years of med school and three years of residency and a decade of being an emergency medicine attending physician, but she’ll often ask me medical questions. Should she use the liquid bandage? Does this thing look serious to me? Do you think (insert symptom here) means I’m getting sick? My medical education consists of listening to her do questions for medical exams, listening to her stories and our friends’ stories, and sneaking into some drug rep dinners by pretending to be a doctor (the one about TPA, a stroke medication, is particularly vivid because Bess claims I raised my hand at the wrong time). She’s performed a thoracotomy—a rare, Hail-Mary procedure in which the doctor cuts open a person’s chest and attempts to use their hands to beat the heart:

With a fifteen blade, I slice deeply from his nipple all the way down to the bed. I grab the scissors, cut through his intercostal muscles, take the rib-spreaders, put them between his ribs, and crack his chest open. There’s a huge gush of blood. And then a moment of stillness, like the second after a lightning strike. Even his blood smells metallic, like ozone. I reach into his chest and put my hands around his still heart and begin pumping it for him, feeling for damage.

Then I slip my fingers down the length of his aorta and it is so riddled with holes that the frayed pieces disintegrate in my hands.

She treats pneumothoraxes and the obstructive shock they cause, also by cutting through the patient’s chest wall to puncture the patient’s pleural space to insert a chest tube. With all that medical experience, she has not internalized that I don’t know if she’s getting sick. I never know. I tell her that and she still wants my opinion. Despite her wealth of medical knowledge and my paucity of it, I’m still her second opinion about many medical issues.

* Book judgment. Bess has shaken off most of her bad MFA interests and habits, but she’s still prone to buying books that have no plot, or are political statements rather than novels, or otherwise aren’t any fun. Bad books affect her writing negatively; good books, positively. I’ve told her that, the next time a book from the McSweeney’s book-of-the-month club arrives, she’s to chuck it and read the first Elmore Leonard novel she can get her hands on.

* General comfort. Bess has said: “The only person who can comfort me over everything happening around your cancer is the person it’s happening to.” Right now, I can (and do) comfort Bess. She nods her head when I ask her if she feels that I’m doing a good job. After I’m gone, friends and family will try to comfort her. I’ve told her as much, and she replies that they won’t be me, and that the only person who can comfort her then will be a person who is gone. I hope that the many ways I’m showing her love now, and trying to prepare her now, will be enough. I’ve been making videos for her, so that when she needs my comfort, she can pull those videos up on her phone, and have a sense memory of me holding her and petting her head while I tell her it will be okay. It will be okay. If there turns out to be any way of reaching her, she knows I’ll do it. She has said she’ll look for me in dreams, since she’s a lucid dreamer.

* Eye masks, dishwashers, and ear plugs: This group is unashamedly a grab bag; Bess didn’t use eye masks for sleep until she saw me using them. Eye masks turn any room into a dark room. Dishwashers reduce the time wasted on dishes, but Bess’s parents apparently don’t believe in efficiency and so they’d never used one, and neither did Bess until she saw me using one. Ear plugs make noisy bars and restaurants tolerable. All three are quality-of-life improvements.

Some of these are minor and merely illustrative, to the point where the reader may be rolling his eyes; suggesting Bess leave a blanket outdoors isn’t on par with editing her work or functioning as her memory. Small actions add up. Small inconveniences and annoyances can become large problems, such as the wrong keyboard turning into a tendonitis and turning into her not being able to write or work. Fun fact: the most important part of a doctor’s life and career hasn’t, for years, been patient care—it’s actually keeping the electronic medical records (EMR) up to date. Kill a couple patients? Frowned upon, but also, eh, it happens. Screw up the computerized record keeping that allows hospitals to bill insurance? That’s a crisis and fireable offense. I exaggerate only slightly.

Not everything I show Bess takes. She wisely eschewed the Vibram Five Fingers (“toe shoes”) when I went through a period of misplaced enthusiasm. She did show me how to pick up a pen from the ground with my toes, a trick I could execute in those shoes, to the horror of students. She likes to travel and wisely ignored my arguments for travel being overrated. There are probably others that I can’t think of right now, but the overall trend is for us to show and share things to one another and for those things to be incorporated into and enhance our lives. When I’m gone that process will break down, and, with it, I worry that Bess will live a worse life, not just from loneliness but from not continually being exposed to the process of discovery that I automatically undertake.

The physical stuff matters, sure—the keyboards or the induction stove—but the loss of processing power and future growth are worse. She helps me grow and I help her. My own growth trajectory is going to be shut off by death, but hers will, I hope, continue. Without me, I worry that growth trajectory will be truncated.

This essay is nominally about Bess, but it’s really about how to have and grow a relationship. How to have and grow a life. No, come to think of it, not one life—two.

* What? Even while dying, I’m allowed to have some intellectual and policy-wonk inclinations.

** There are obviously exceptions, like the people planning to divorce anyway, or the people who stay together out of convenience or habit or lethargy or any number of other sad, if common and practical reasons.

*** Bess says that the keys to saving a (sleeping) relationship in the bedroom takes two things: Separate blankets and some kind of quality personalized white-noise-maker.

Turning two lives into one, or, things that worry me about Bess, after I'm gone
Us on Wednesday, Aug. 30, 2023.

Seeing as a doctor, seeing as a wife

August 23, 2023 By in Personal Tags: , 1 Comment

My wife, Bess, wrote this.

It’s 11 p.m. and I’m shaving my dying husband’s head. We’re in the bathroom, lit only by a curlicue of nightlight. I’m wielding a heavy pair of metal clippers in my right hand, like a deranged, crying barber, as tufts of dark brown hair collect on the broad, smooth expanse of Jake’s upper back. He’s kneeling in front of me, watching intently in the mirror, assessing progress, maybe. What’s he thinking about this literal and symbolic loss? I reach down to collect the soft piles of hair at his feet and toss them into a plastic grocery bag we’re using as a trash can. I used to love playing with these curls just behind his ear: a tickling call for his attention.

Then chemo caused his hair to start coming out. The tipping point happened moments before bed.

“Now,” Jake had decided, looking at a clump of hair in his fingers, “let’s do it now.”

I slide the clippers across Jake’s scalp. Separated from his head, his hair goes from the basis of my favorite diminutive— I call him curly-fry— to something inert. Just hair. It’s no longer his, and thus devoid of most sentimentality.

The buzz of the large metal clippers is insistent, making my ears ring. Lifting the clippers is hard; my limbs feel sore and exhausted—a side effect from crying much of the day (much of every day), as if carrying heavy emotion is akin to lifting heavy weights at the gym. My body seems reluctant to perform this task, even though, when Jake asked me to shave his head I said yes: I want to do it for you.

I’m not crying over the loss of his hair, though I know as well as you do that hair loss has become a boringly cliché cancer trope. No, what discomfits me is that, until Jake observed it, I hadn’t noticed his hair falling out. I didn’t see the obvious hair scattered throughout our apartment, as if I was living with a six-foot-tall, literary, shedding dog: hair on the pillows, hair on the blankets, hair on the couch, hair on our clothes—hair even on and in books on the bookshelves. How did hair get in the books? It was everywhere. And I didn’t see it.

What else wasn’t I seeing?

I’m an ER doctor, and, when I was in residency training, learning to become a good doctor meant learning how to see: the way a patient bites their tongue too frequently during a conversation, the way their speech sounds slightly slurred, the vague discoloration on the edge of their tongue. Other organ systems need to be observed, too, of course, but tongues are top of mind, since Jake has Squamous Cell Carcinoma of the tongue. In theory, one key to being a good clinician is being able to observe (although I know a reasonable number of dense physicians). We study how the body works, primarily so we can understand the infinite ways that it can fail, and how to intervene to stop failure and improve health. But knowing what to do with a problem isn’t enough if you can’t identify that there is one in time. “In time” is key: if you can’t work fast, by the moment you realize the problem, the patient will be dead, or debilitated, or have suffered needlessly.

Much of the skill in being an ER doctor simply comes from practice: identifying who’s sick and who’s probably okay to nurse themselves at home is really the risk stratification of patients. Assessing patients is a skill honed from seeing vast numbers of them, and, like all probabilistic measures, I sometimes I go by the probability’s dictates and am later proven wrong. Medicine is humbling like that. Bayesian inference isn’t perfect. I can’t explain all the subconscious calculations that cause me to hear alarm bells when I see a brief, transitory tremor in one patient, but to know that, in another, it’s a sign they’re cold because we keep the ER temperature low, like a comedy club. And sometimes—because this is the nature of being a human being doing a job in a messy, chaotic world—I notice a symptom, and I misunderstand what it means.

Early on, I didn’t notice enough about what turned out to be Jake’s cancer. So I’m left wondering: if I’d asked him to let me examine his tongue, instead of suggesting he not chew so quickly when he bit it for what seemed like the third time in a week, would the outcome be different? Was there a window of opportunity in August 2022, before the tumor invaded local nerves, when his first surgery might have been curative? Not acting sooner and pressing Jake to act sooner is the biggest error of my life. And though I’ve been told repeatedly that I need to focus on being Jake’s wife, not his doctor—as if I could separate the two, as if monitoring his physical changes isn’t a sign of love—there’s no other physician as motivated as I am to observe the minutiae of Jake’s body. For all that I miss, no other doctor will see as much as me.

Some of my observations likely have bought us more time: I pushed for the CT scans that diagnosed his recurrence a month earlier than would have happened otherwise, because Jake developed slightly more pronounced snoring at night and wasn’t gaining weight despite ferociously consuming calories through his peg tube. I caught a tracheostomy infection early because of a change in odor I noticed when I curled up to him and rested my head on his chest. Excessive studying can become pathologic—I can’t start believing that every time I close my eyes something will go unnoticed and therefore go wrong, yet, on the other hand, I also can’t be sure that it won’t. What if slipping the pulse oximeter on Jake’s finger while he sleeps, when his breathing is irregular, allows me to intervene the moment he becomes apneic? It’s possible, and maybe even probable, that my hypervigilance makes no true difference, and that I want to believe I have some agency that I don’t. It’s the paranoia that comes from lack of control—or maybe it’s merely good emergency medicine. It’s also who I am: I can’t give up being a doctor, any more than I can give up being a wife.  

Until the night of the great shave, I hadn’t thought about what chemo would do to his hair. We were focused tightly on two big chemo questions: will it stabilize his aggressively recurrent squamous cell carcinoma of the tongue long enough to find a clinical trial that might act a life-saving Hail Mary? Or were the tumors growing so quickly that he wouldn’t survive the week? In a month and change, Jake had gone from clean surgical margins and barely detectable circulating tumor DNA (tumor DNA can circulate in the blood and be monitored via tests like Signatera’s), to four large, new tumors around the tongue flap and in the neck, along with probable metastases in the lungs. That occurred while Jake was on an immunotherapy drug called Keytruda, which, if he’d responded to it, was supposed to be a miracle drug that would save him, as it has saved many others. But he’s not a Keytruda responder. Chemo, for what Jake has, is only palliative. We were playing for time.

For the week after the first, desperate chemo infusion, all I could see were signs that Jake was going to die quickly. I’ve seen a lot of people die in my line of work.* I know how to recognize the harbingers of a final decline: Jake’s mouth rested in a wide “O” shape as he slept. I saw the irregular rise and fall of Jake’s chest, and he was occasionally apneic. I sat in bed with him all day, frequently holding my hand in front of his mouth to make sure he was still breathing. Jake’s heart was erratic and quick, as I held my fingers against his radial pulse and surreptitiously checked his Apple watch. I slid a pulse-oximeter on his finger to check his oxygen blood saturation. I held him and I told him I loved him and—this was entirely unlike him—sometimes he didn’t say anything back. I’d speak and I’d touch him, and he’d not seem to hear me or feel me. It was as if both his body and mind were lost to me in a distant fog. All I could do was sit there and wait to see if he’d emerge.

While this was happening, our friend Fiona was visiting, both to see Jake before the end and to help with any chemo-related emergencies (she’s an oncology nurse and thus uncommonly equipped for such things). Throughout the long days, she’d pop her head into the door frame of the bedroom and ask: “Are you going to stay in there all day?

“Yes.”

“Are you just watching him breathe?”

Also yes.

“Do you think that watching him breathe means he’ll continue breathing?”

“Oh, absolutely.”

Fiona nodded. My logic seemed reasonable, considering. Five years ago, she’d been sitting where I now was, when she lost her own husband to a drawn-out illness.  

“I did the same thing,” she said.

And I felt understood. Slightly vindicated, even.

It didn’t occur to me that Jake might simply be over-sedated; his response to the medication looked too much like the slide into the void.

Before this moment, Jake might have been a cancer patient, but he’d never looked like a cancer patient to me. That’s a difference between looking at him as a doctor and looking at him as a wife:  As his wife, I look at him and I see all the things still going right. I see his body as a conduit for pleasure, joy, connection. The peg tube, the thirty-pound weight loss, even the missing tongue—all clinical signifiers of “cancer patient”—don’t register for me when I see without my clinical eye. When I’m not careful to watch out for new signs and symptoms, I look at him, and without trying to, see just Jake.

Although I wonder what I’m missing when I don’t look at him clinically, I also wonder what I’m missing out on when I do.

In thinking about the ways I look at Jake, I’ve also become acutely aware of the ways he looks at me. And I’ve come to understand that no one will ever see me the way he can, again. Jake and I are both almost forty. That’s hard for a woman. There are a lot of assumptions being made about my body and my relevance that are difficult to ignore. I’ve started noticing some grey in my hair, some slackness around the jawline, and the recent circles under my eyes. Entropy doesn’t care that I eat a mostly plant-based diet, or get mistaken for a 30-year-old with some frequency (or at least, I used to, before Jake’s illness aged us both 500 years). Ultimately, we’re all victims of physics and biology, until anti-aging science starts producing blockbuster products.

But when Jake looks at me, he sees me at 25, showing up to our first date in a grey mini-dress, black boots and red lipstick. He sees me at 29 in a striped bra and panty set in our 35th story Seattle hotel room, pressing me against the cold glass. And he also sees me as I am now. I’m all these ages at once, as he is to me. Love isn’t blind only to ugliness, but to decay. Look at two 80-year-olds gazing at each other like teenagers and you’ll know what I mean. When I lose Jake, I’ll lose someone ever seeing me throughout all my ages again. I’ve said that parts of me will die with him, and mean more than the parts of my heart and the parts of my personality that act in relation to his. I mean entire eras of my life, all the views he was privy to, and therefore, much of my youth, goes as well. No one—even if I find love again one day, as Jake has urged me to do—will ever look at me at see me at 32, skinny dipping on a trip to Gunnison nude beach in New Jersey with a group of friends, laughing at how cold the water is under the sun of a hot summer day.

Jake’s Dad brought the point home to me unintentionally when he came to visit Jake in the infusion center during chemotherapy. Jake was sedated from the meds and his Dad sat beside me, talking nervously, and got onto the topic of soul mates: “The closest I got was to my high school girlfriend,” he said. “I don’t know her last name now, or when she got married, or where she lives. I wouldn’t be able to find her. She’s a 75-year-old woman now.” He looked towards the door of the infusion center, as if anticipating her sudden, miraculous arrival. “But if she walked in here right now, I’d recognize her. I’d see her as she was at 16 at prom, in a white empire dress, blue eye shadow and a bouffant hairdo.”

Jake has said that in the end, I’ll never be able to look back and say I didn’t do everything I could for him. I’ve found ways to keep him alive that are based in clinical treatment, and, more so, I’ve kept him alive by making life seem more appealing than the alternative. Knowing he feels that way is a small, inadequate comfort if I can’t keep him alive as long as he can and should be alive. But it is a comfort. Making sure he has a good haircut doesn’t rank as highly as finding the right clinical trial or ensuring that the right CT scans and medications are ordered. It’s less than blending a cookie with milk or some lentil soup for him to drink (and taste—an ability he’s recently reacquired). But in this moment, making life seem better than death matters. Cancer makes your world small, focusing it down to how you approach even the simplest tasks. Good medicine and love are both in the details.

There’s a pretty Regina Spektor song called “Sampson” going through my head as I finish shaving Jake’s head— the kind of music he accurately labels an “emotional lady song.”

            I cut his hair myself one night

            With a pair of dull scissors in the yellow light

            And he told me that I’d done all right

            And kissed me till the morning light

I wish Jake could kiss me for hours, like he used to. But the split mandibulotomy during his total glossectomy spliced through his lower lip, and the nerves with it, leaving his lip mostly insensate. Instead, I hold his hands, I rub his back, I curl up beside him while we sleep, and I will soon run my hands over the soft stubble of his newly-shorn head.

He reaches up and folds over the top half of his ears so I can buzz off the tiny hairs around his hairline, and then we’re done shaving. I feel a sudden rush of giddiness. Jake still looks like himself. He’s lucky not to have a potato-shaped head and beady little eyes. He pulls off bald strikingly. He looks handsome. Of course he does. I love him, so of course he does. He looks handsome to me even when he’s looked cadaverous to others.

It’s disorienting to hold two truths in my mind at the same time: one truth, Jake is sick, terminally so. Seeing his frailty those first few days after chemotherapy, when I was sure he was about to die, was seeing things are they are. But so is the other truth: seeing him as vital, quick-witted, deeply connected to the world of ideas, and, as it turns out, very sexy bald.

I tell him so: “You’re very sexy bald.”

Jake fixes me with one of his dubious looks, that I know so well.

“You are!” I say.

He squints at me, this time with more skepticism.

 “That’s my diagnosis,” I say, both doctor and wife.

He accepts this with a smirk and examines his new haircut. When he lets go of his ears, I kiss the tops of them. I kiss the top of his head. I kiss his upper lip, that still has some feeling. Then he tells me that I’ve done all right.

If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care. In addition, Bess is now writing a Substack. You should subscribe!

Before the cancer diagnosis.

* Something serial killers and ER doctors have in common.

I know what happens to me after I die, but what about those left behind?

August 21, 2023 By in Personal Tags: , 14 Comments

I keep thinking about what happens to my wife, Bess, after I die; there’s a recurrent image in my mind, about what happens to her after I’m gone, that I can’t seem to shake. Bess once started a story this way:

I know what happens after you die.
I take your family into a quiet room, with Kleenex, and then I say the word “dead.” Not “expired” (because you are a person, not milk), and not “passed on,” because families always want to believe that just means I transferred you to another hospital.
Dead.
I have to say it.
That’s basically all they taught us about how to deliver bad news in medical school. A one-hour lecture.
When you train to become a doctor, they don’t really teach you about death. They tell you how to prevent it, how to fight it, how to say it—but not how to face it.

She’s an ER doctor, so she’s delivered a lot of bad news to a lot of families—her line of work delivers bad news like OB-GYNs deliver babies. She tells families about death, and sometimes coroners, but she doesn’t go home with the family. She doesn’t think deeply about what that dead person’s life meant, because she can’t, and it’s not her job to. She doesn’t go through that person’s things, chucking or donating almost everything that someone used to construct and execute a life. We spend so much time buying, storing, corralling, searching, sorting, and thinking about stuff, and then we perish and what happens?

I mean that in a literal way: I die from that squamous cell carcinoma in my neck and lungs, and then what? What happens to Bess? In the short term there is a lot of crying. Friends and family are, I hope, there to comfort her. Probably I’ve been helped to the other side by hospice, or, alternately, the pain has gotten bad enough that I’ve chosen to end things. I hope, too, that we’ve said everything there is to say between us, because Bess and I have a deal, a rule, an agreement: to leave nothing unsaid. Whatever it is we want to say, we say. This may not be a common way to face death. Bess is in a bunch of doctor-related Facebook groups, including some about relationships and some about terminal illness, she reports that a lot of couples don’t seem to have relationships in which they can say what they most deeply feel and believe. Instead, they seem not to like each other much, or to focus on quotidian aspects of their lives up to the very end. How must that feel to the person left behind?

There must be a sense of unfinished business, of things never unlocked, of it being suddenly and permanently too late to get out whatever a person most truly feels and thinks. A lot of The Presentation of Self in Everyday Life is, justifiably and rightly, about damping and tamping down feelings and one’s deepest convictions, in the pursuit of getting along, paying the bills, advancing science, and so on. Adults can’t run around constantly feeling big feelings, except maybe for the occasional manic artist or lunatic writer. We need to get stuff done. But there are times, like when we’re dying, or marrying, or watching birth, or giving birth, or taking MDMA with someone we love, to step back, feel things, and express what’s there.

To be clear, Bess and I are working hard to delay the moment of death—it looks like Bess has helped find me the optimal clinical trial—but the odds of lasting more than a year, if that, border on “miraculous.” I don’t want to be delusionally optimistic, inanely pretending that things are not as they are. I do want to cultivate the optimism and perspective described by Dan in this story, but I also want to prepare, as best I can, myself and Bess and everyone else around me, for what’s to come. And the speaking about what is to happen is part of that.

I don’t know precisely how the end will come, and oncologists are deliberately quiet and vague about the specifics. They say it’s different for everyone, which is probably just true enough for them to justify to themselves the saying of it, and the evading of the question’s heart. Internet searches have filled that void, although, unless you have specific need to know, I recommend against learning what death by head and neck cancer is like for the person dying.

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.

Then what happens? What happens after I depart, whether at home or hospital or some other place? When I’m gone, I don’t see any point of being buried in a random cemetery, but dealing with the corporeal matter is probably the easy part, relative to the emotional stakes. I don’t want to leave Bess bereft of direction: I like the idea of a low-impact set of remains management, and one that symbolizes becoming part of the earth again. Conventional cemeteries probably made sense at a time in history when most people never traveled more than a few miles from where they were born and most families were large and interconnected, but they don’t seem to make much sense to me today. Conventional cemeteries seem like a tremendous waste of space, particularly in cities.

I’ve read that the Japanese have a system in which a person’s grave site is rented, not “owned,” and a person’s remains remain in the site for as long as someone pays a nominal fee—something like $20/year. When no one is left to pay the nominal fee, the site is re-used for whoever is next. Doing this ensures that not too much urbanized land is poorly used. This system seems good to me, but it’s not the American system. I’m fond also of the idea of being put in a mushroom suit and made into mushrooms, but that strategy seems to have gotten a lot of PR and yet isn’t used much.

Out of the plausible and easier outcomes, I like the idea of cremation best: then Bess can turn me into plants and/or mushrooms as she grows them (in Arizona, one has to interact with a funeral business, which is a regulatory scam, but that’s a rant for another time). When she’s got a new plant or mushroom cake, she can put bits of me into the soil. In addition to being cremated and being made one with nature again, I checked, and it’s possible to sponsor a bench in a New York City park for a not-ridiculous amount of money. So I’d like a bench sponsored for me, in Stuyvesant Park on 2nd Avenue and 16th Street. That’s a few minutes from all three apartments we lived in in the city. Whoever is in the neighborhood can come sit with me—or perhaps “on” me. Whoever wants to say hi can bring some coffee and pour a little on the ground for me, and read on a book on the Jake memorial bench. Our friend Josef stopped by to scout the park; his report listed five plausible plaque sites, with the ideal in his estimation being:

1. Outer edge, West Park. I think this is the best spot. Nice view. There’s a free book box nearby to see what people want to share and read. Quiet street behind rather than the main street. Tree behind the bench providing some shade, though it’s less full than many others.

I’m sold.

Cremation and a bench memorial seem more meaningful than conventional options, like a pointless burial in a pointless cemetery in a random place that isn’t home to me. Plus, I’m fundamentally an American, and we make shit up as we go along. Our main tradition is “let’s make up traditions.” Which is what I’m doing.

So Bess now knows what happens to me after I die.

And what happens then? I sound like a child, repeating the “And what happens then?” question, but I think about it. Bess and I have an apartment containing the physical stuff of our lives together. Bess has made it a home, which is good, since I’m too lazy to pick the art on the wall or keep the plants alive or put a cheerful blue rug on the floor. I’d live with a computer and a bed and some folding bookshelves and kitchen gear and not enough other things to make a housing unit a home. Our apartment has been a good enough, verging on outright “good,” place for us to live—the only place we’ve lived since leaving our true home in New York—but it’s not somewhere she’ll want to stay after I’m gone. There’s a transient feeling to our apartment itself and the apartment building we’re living in; no one lives here for long. We’ve probably lived here longer than we should have, but moving is a schlep and Bess has done a lot of work to make our place nice. We’ve got complementary skillsets, which makes her losing me even harder. We’ve planned to move out once we have a kid, but that process has proven more challenging than expected (which is a topic that could get its own essay, and might).

When Aragorn chooses to pass on (if I were a doctor talking to his family, I’d say “die”), Arwen goes forth from his tomb, “and the light of her eyes was quenched,” and she goes out of the city, never to return. Bess will one day leave what is now our home—the place where we lived happily for years—and she’ll go when all the stuff that makes up our lives has been boxed up to be moved or discarded. What will that process be like for her? Painful, I have to think, given how memories will suffuse so many otherwise inanimate objects. I’ve offered to donate the clothes I’m not wearing any more and otherwise tidy up my physical things, but she’s refused. She wants to do it herself.

I’ve also offered to donate some of the unruly number of books I’ve been foolishly carting around, but she’s refused that too, saying she wants to choose which ones to keep—especially the ones I’ve written in, which is most of them. She won’t need the geothermal energy textbook I’ve used when writing proposals, I think, or the books I’ve not gotten to, or the Python programming book I’ve not given the attention it deserves, but I’ll leave them. She’s claimed that she’s “keeping them all,” and that she “wants them all.” This doesn’t seem pragmatic to me, but I won’t be here to vote.

Some books, like my copies of The Lord of the Rings or The Name of the Rose, she’ll obviously want. They’re favorites of mine, and I read both out loud to her—Bess is a nervous, difficult sleeper, and reading to her helps her relax into sleep. For The Lord of the Rings, I gave Pippin an absurdly lisping voice that often made Bess protest that I should “read him normally,” as if her nightly protests weren’t part of the fun. For The Name of the Rose, I spoke all of William of Baskerville lines in my best Scottish accent, poorly but enthusiastically imitating Sean Connery. I’ve put Bess on the accounts she needs to be on and entrusted her with the vital computer passwords. She knows where the pictures are (I shoot most of the photos—there are those complementary skills, again), and she knows the organizational scheme, which is important because organization isn’t among Bess’s strengths. In searching for and researching clinical trials, though, she’s practically been a project manager: when the stakes are highest, she does what needs to be done. She’s helping to delay the day when she’ll walk out of our home for the last time, and into whatever the future will hold for her. I think she’ll live with her parents for a bit, and maybe fly to the East Coast and stay with friends for a few weeks at a time. I think that one day she’ll be ready to love again, and she’s promised to at least be open to the possibility.

As hard as it is to write this essay—I’m crying as I type—I’m sure it’ll be harder to live. Bess tells me that she feels lucky to love me so much. Not everyone gets that. She feels lucky; I feel at least as lucky.

Maybe she will walk through the empty rooms of our home one more time, thinking of all the life we lived in them. Some of our friends—Josef, Martha, others–have promised that she won’t be alone for the task of discarding and packing and moving, and I hope they adhere to that promise.

This is the image that recurs to me: Bess looking around for the last time, Bess shutting the door for the last time, Bess walking down the hall for the last time, Bess walking out of the building for the last time, Bess being alone and me not being able to do anything about it.

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

How much suffering is too much?

August 16, 2023 By in Personal Tags: 12 Comments

This is by my wife, Bess. You can find her new writing on her substack.

For the second time in a two weeks, Jake tells me he’s ready to die. The first time he says it, he’s frustrated: red-faced and retching, trying to hack out a thick glob of the mucus of the sort that’s incessantly collecting in the back of his throat. Jake has squamous cell carcinoma of the tongue, and each new attempt to burn, poison or cut out the cancer has added to a list of losses that aren’t adequately balanced by gaining time on this planet.

The first surgery used a CO2 laser to cut out a cancerous portion of the left side of Jake’s tongue, and as soon as Jake recovered adequately from the surgery he got hit with radiation, which scorched away mucous membranes and skin. Radiation caused dry mouth and thick, ropy secretions—but the surgery and radiation didn’t prevent the cancer from recurring. As bad as the original treatments were, the new surgery entailed a “total glossectomy” and “partial laryngectomy,” which is medical terminology for “his whole tongue and part of his larynx were removed and replaced by a flap of tissue from his thigh.” The new treatments cost Jake the ability to speak and swallow normally, or to feel saliva pooling in the back of his throat and clear it. The thick secretions and abnormal swallow mean he’s constantly battling to expel phlegm, only to have it immediately return. The “goo,” as he calls it, is relentless. He is constantly spitting, hacking and choking.

“It never fucking stops!” he wheezes between attempts to hack that mucus up and out. He gets some out, but it’s obvious that he’s not getting all of it.  

The blue, v-shaped vein in his forehead is popping. He’s clutching the edge of the sink, trying to expel a thick glob that I can hear rattling as he tries to speak through it. His fingers are turning white. He attempts a sip of water—a skill he has just recently started to re-learn—which gets caught in the mucous, so he aspirates some in his lungs. He gasps stridulously but no air is moving into his lungs. For thirty terrifying seconds he’s not getting air. The muscles around his ribs retract, straining. I’m an ER doctor, but a Heimlich maneuver for a small amount of water isn’t going to do much. Anyway, in this moment I’m not thinking like an ER doctor, I’m a panicked wife. I need him to breathe again. I need this spasm to pass before he passes out. I’m hopelessly planning out how to get a man nine inches taller than me to the ground safely, when he turns red and gasps. Finally, he spits out a huge lump of goo. It’s quickly followed by another. He strikes the counter with his hand. 

“Enough!” he says. “All day, every day. It’s disgusting. I’m disgusting. I try to sleep and there’s goo, I wake up and there’s goo. I spit it out and there’s more goo. I’m ready for this to just be over. The only way it’s ever going to stop is when I finally fucking die.”

I stop reaching towards him and keep my mouth shut.  I just squint at him like I’m staring directly into the truth. He’s right. I don’t want him to be right.   

How does a person decide how much suffering is too much? I’ve spent nearly every day of my career faced with that question. Each emergency room shift brings patients with their tenth bowel obstruction after their fifth surgery for recurrent colon cancer, patients on their second transplant (with more organs failing) coming in twice a week to have fluid drained from their abdomens, their lungs, from around their hearts. Autoimmune patients and diabetics losing limbs piecemeal. All these people, trying to stay alive in a state of perpetual falling apart. Entropy is so clearly winning. I can see why they’d want to say “enough,” and let go of the gift.   

Before we knew for sure that Jake’s cancer had returned, we were walking hand-in-hand around downtown Phoenix after grabbing tacos for dinner (back when we could just grab food, put it in our mouths, chew, and swallow, like it was nothing at all). We knew Jake’s PET scan was abnormal, and that the CT scan was too. But Jake had just completed radiation, which frequently causes inflammation, leading to false-positive early PET scans. There was a good chance the abnormal CT showed destruction of the hyoid bone in his neck—a potential side effect of radiation—which, while not optimal, isn’t a tumor and thus wouldn’t kill him.

We’d met with his ENT surgeon, a Dr. Michael Hinni, earlier in the day, and we’d scheduled a biopsy to settle the “is it cancer?” debate. That night, we had the luxury of speculation. It was Schrodinger’s tumor: both present and not present, with us heavily leaning on the side of “not present” as a comfort. Dr. Hinni had told us that a recurrence meant “salvage surgery”, which would cost Jake half his tongue and part of his larynx, and could leave him unable to eat, swallow or speak. Dr. Hinni and the surgery team would have to replace half of his tongue with a flap of tissue harvested from his thigh. The other option was immunotherapy, which was estimated to have a 30% cure rate—a number which we now know is so overly optimistic as to be laughable. 

“If it’s cancer, I’d rather not have surgery and take the 30% chance at a normal life,” Jake says as we walk.  I grip his hand as if he were a balloon about to float away. “I know that isn’t what you want to hear.”

I nodded. It wasn’t. But I could be magnanimous. It was still a thought experiment at this point. So I say, “I understand,” because I do. But also because I could still say, “I just hope that isn’t a decision you have to make.”

It was cancer. When faced with the certainty of a diagnosis, Jake moved forward with the surgery. “It’s surgery or death,” he said, and he wanted to have a shot at living. For me, he said. He’d still get the immunotherapy, to increase the odds of a long-term cure. I felt as much relief in his decision as I did fear about what that meant for the rest of the life he might or might not get.  

The second, “salvage” surgery occurred on May 25 and lasted twelve hours. Around hour ten, I started to wonder if Jake wasn’t ever getting off the table. When Dr. Hinni finally called me in to tell me they were able to remove all the cancer, I was elated. He got what surgeons call “clean margins.” Then Dr. Hinni explained that, because the cancer had grown in the short time between the April scans and May surgery, he’d had to remove Jake’s entire tongue, not just half—and with it, Jake’s ability to speak, to swallow, to taste—and the relief was replaced by horror. I blacked out for a moment. Jake wouldn’t want this. I walked into the hot night air and hyperventilated in the parking lot. We hadn’t even considered the possibility that Jake might lose his entire tongue. I wondered what I would have done if Dr. Hinni had called me with an update and asked me if they should move forward with the removal? I threw up in the parking lot and felt sick relief that they hadn’t. 

In a panic, I called the one person I could think of: our speech pathologist, a woman named Jessica Gregor. She reassured me that, if the surgery hadn’t removed Jake’s entire voice box, he’d likely be able to speak after a fashion again. And swallow some liquids. She told me not to give up hope, and that the road would be long, but that not everything I feared and expected would come to pass. The surgical margins were free of disease. The cancer was gone. I needed to focus on that.

I spent the first night in the hospital sitting awake at Jake’s bedside, certain that he’d decide to die after learning the news. He didn’t want to live like this. It seemed entirely possible to me that he would just decide not to.

It’s amazing what people learn to live with: Paralysis, dialysis, blindness, deafness, pain, the loss of a limb, impotence, incontinence, the loss of a tongue. For some patients, the losses accrue by degrees. I’ll see them dwindling across years of emergency room visits. Their suffering slowly compounds, each gradual change requiring a small adjustment, yet adding up to tremendous deficits. But for others, like Jake, the door to the person they were before shuts so suddenly and so loudly that it shakes the whole foundation of the building. There’s no getting used to the idea of a new life, slowly. There is just a new life. I’m not sure one way is better.

But there’s a lot we think we can’t live with that, once faced with having to live with it, we do. I’m constantly amazed by patients, like Jake, who are incredibly resilient, finding reasons to live in a landscape they expect to be desolate of motivation. Maybe we don’t even need the motivation. Maybe it’s just what we’re programmed to do. Survive.

Still, I try to give Jake something to live for.  

The big things: love, affection, and (hopefully) a kid—if he can make it that long and science is on our side. And I try to remind him of the things he loves to do that he has always lived for: writing, thinking, learning. Me.

But there’s also the unexpected gift of rediscovery. Eventually, Jake gets his tracheostomy breathing tube capped, and we can speak to each other. It takes time for me to get used to his new speaking patterns, but I now understand him without great difficulty, although I need to clarify what he’s saying to people who aren’t around him frequently. Incredibly, just a week ago, he swallowed water for the first time, with the support and instruction of Jessica Gregor.

The ability to swallow escalated quickly—what time was there to lose?—and he discovered that when he swallows, he can taste, probably using the taste buds left in his esophagus and on his hard palate. So now I’m blending brownies and cookies and melted ice cream as many times a day as I can, stuffing him with sugar like a foie gras goose, hoping it’ll be pleasurable, but also in the hope that it’s one more thing—and no small thing—to live for. A way to feel reconnected to himself. Victories that distract him from ruminating on the question: how much suffering is too much? How much mucus and hacking and struggles breathing can a man tolerate? How much pain? How many things taken away? Without the victories, I’m scared that the more Jake thinks about the questions, the more he’ll settle on an answer that is: less than the suffering he’s experiencing now.

Just two months after the horrific surgery that was supposed to buy us years together, the cancer has reappeared in four new places along the margins of his tongue flap, neck, floor of the mouth, and larynx. It’s metastasized to the lungs. Suffering, it seems, just begets more suffering. It’s hard to see the person you love suffer. But even when Jake suffers, I’m glad he’s here. Here to lie next to me at night, to edit this essay when I’m done with a draft, here to just exist in the same piece of spacetime. I’m glad he’s here, because he’s still trying so hard to be. But I think I’ll probably also be glad he’s here when he no longer wants to be. I won’t be able to help myself. I want him to stay through the pain, the mucus, the feelings of drowning. And I wonder if that makes me a monster.  I’m so greedy for him—for time with him for his body next to mine—that I wonder, if it hasn’t yet, will it turn me into one eventually?

I’ve seen it happen. Finally faced with the actual end, families have begged me for medical violence in the ER. As if only more technology, procedures or sheer force will solve the problem of every human’s inevitable decline. “How Doctors Die” describes the way doctors understand that medical violence at the end of life isn’t a good answer, and that compassion often means declining the last possible bits of care, which resemble torture more than medicine. I’ve felt the ribs of a desiccated 95 year old break under my hands while doing CPR. I’ve seen a heart failure patient’s family refuse comfort care in the hopes that more meds and devices will convince the heart to squeeze harder. I’ve heard the words “do everything,” so much that my relationship to futility has changed.  

It would be easy to say that families’ desires for more medicine, more effort, is a product of medical ignorance—too many TV shows convincing people that CPR has more than a 10% survival rate. But that’s not the whole story. I realize now how easy it is to forget that something doesn’t work when you want it to work so badly. Sometimes, we justify these requests by hoping for a miracle. We ask ourselves: can I live with myself if we won’t try everything?

So I have been trying to ask myself: can I live with myself if we do?

I ask our friend Fiona, who was Jake’s charge nurse when he first had cancer in 2005, and who lost her own husband after caring for him through a prolonged illness just five years ago:  “What if Jake is going through surgery and chemotherapy and suffering just to stay with me because he knows how badly I don’t want to lose him?”

“What if he is?” she says “If that’s the gift he wants to give you, let him. If he wants to stay for you, he wants to stay. Let him.”

“I’ve told him he doesn’t have to,” I add, hoping for absolution.

“He’ll tell you when he’s had enough.”

            The second time Jake tells me he wants to die was just a few hours ago. We’re sitting in the chemo cubby, as I’ve come to call it: the semi-private, three-sided cubicles in the Mayo infusion center, where you can hear the other cancer patients—the coughs, the chatter, the pumps beeping—but not see them until you get up to find a bathroom. We’re walled off by windows on one side, and while it’s bright and a little hot, the light is nice. From here, we can see the 101 freeway, which we agree is admittedly less exciting than watching First Avenue from our folding dining room table back in our old Manhattan apartment. Both of us would love to go back and visit our old life, to walk down 14th Street together, hand in hand. But cancer makes your world small, so much smaller than your old life, and the prospect of a transcontinental flight for a pleasure trip in the face of so much exhaustion feels impossible. The place I most want to be these days, is just wherever Jake is. Even if it’s the hospital. We’re adjusting our expectations.

The nurse comes into the infusion cubicle with the pre-treatment medications. She pushes six different meds, including Ativan and Benadryl, which cause sudden psychomotor slowing. It’s like watching the batteries running down on a wind-up toy. Jake fights the wave of somnolence, and he starts to mutter. He asks the nurse about the coordinate tattoo on her arm.  He closes his eyes and says he sees visions, patterns, but can’t clarify more. Are they psychedelic or dream like? Both? He’s not sure. He’s making some sense but is clearly affected by the meds. Suddenly, he opens his eyes, looks out the window, and says, “at least I have a good view from here.”

Then he starts to cry.

We’ve been doing a lot of crying. But the suddenness of it, the way it feels like the reality of the situation is spreading through his veins along with the sedative, breaks my heart. There’s not a moment when we aren’t aware of the sand running so rapidly out of his hourglass, but there are moments when we feel time slipping away more acutely.  Did he cry during the first infusion? I think so. I could go back into my journal and look, tell myself that this is a medication reaction and not a sign of worsening despair (of course it is, his, and mine, as I’m crying along with him now), but I’m almost positive it is despair—how could it not be?

Chemo is so brutal, and for squamous cell carcinoma patients it is only “palliative,” in that it may extend his life but won’t extinguish the cancer. He’ll have more time to say goodbye but will trade the suffering from chemo for some months more. I hold Jake’s hand and kiss his face and look at his color in the bright daylight—which is sallow, but brighter than it’s been the last few days. He just stares out the window, glassy-eyed, and weeps. I squeeze my body against his to hold him firmly in the chair beside me.  His Dad, who is visiting during the infusion gets up to hold his other hand, which is limp.

“You can give me a squeeze back,” his Dad says, because he needs reassurance, too. I’m not the only one. Jake squeezes. His Dad seems relieved, but not reassured. For a few moments, we both cling to Jake, as if we could grip hard enough to keep him here as long as we need him. When his Dad sits back down, Jake drops my hand and picks up his phone, holding it so only I can see. He can’t really speak any more, but he types:

“I’m ready to die, but not wanting to. Key difference.”

I don’t know if he’ll remember telling me after the Benadryl and Ativan wear off. That this declaration came after being disinhibited from the drugs, though, makes it likely that this is what he really feels. Strangely, it feels like a terrible, heartbreaking reassurance. Not yet, he’s telling me. But one day. Once again, I say nothing, but this time I do reach for him, and I hold him.

I think gently about all the people who have asked me to try futile, frustrating things to try to save the person they love; doctors may “know enough about modern medicine to know its limits,” but most people want to burst past those limits, though they can’t. I think about the way people look at me when I explain that there’s nothing more I can do to help, and anything I do will only to make a bad situation worse. I think about their anger and their fear. And for the first time, I think about the relief they must feel when I, not they, am the one who tells them that enough is enough. No more. They don’t have to be the ones to decide.

It doesn’t make them monsters to want to cling to hope past the point of sense, it just makes them human. It makes me human, too.

I’m both not ready for him to die, and I don’t want him to. But I don’t get to decide, either. All I can do is try to tip the balance in favor of the life he has, until Jake, or his disease, decides that it’s too much. Because the only moment when you can answer the question of how much suffering is enough, is the moment that it stops. 

If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care. This essay is part of a series; click here and then scroll down for the others. See especially “On being ready to die, and yet also now being able to swallow slurries—including ice cream.”

Regrets:

August 12, 2023 By in Culture, Personal Tags: 2 Comments

I read Ryan Holiday’s “24 Things I Wish I Had Done Sooner (or my biggest regrets)” and thought I’d steal adapt the format; I wrote these quickly, with the goal of getting out answers—sort of like “Influential books (on me, that is).”

* Not trying to have kids sooner—much sooner.

* Not fundamentally growing up sooner—much sooner.

* Wasting time in humanities grad school (this is identical to the second point). It was fun at the time but the opportunity cost was so, so high.

* Student loans (which is also related to the second point). Not realizing that large parts of the higher ed system are powerful, important, and legitimate, but large parts of it are scams. Schools themselves obfuscate this basic point, which now seems so obvious to me; despite how obvious this is, no one cares enough to fix it. The student-loan system means schools have no skin in the game and incredible incentives to get students in the door, but no incentives to care what happens after they graduate. This is bad.

* There are lots of things that no one cares enough to fix, or that have established interest groups preventing fixes, and sometimes that’s just how the world is. Bullshit often wins, but it’s a mistake to let it win in your life.

* Not being able to connect normally with other humans (a family failure and one that, when young, I couldn’t even identify, let alone rectify). Diagnosis is a critical part of improvement and it took me way too long to diagnose some of those underlying problems. This regret is linked to a lot of other ones.

* Choosing what I rightly perceived to be the easy way with work.

* Short-term priorities over long-term ones.

* What matters long term? Family and people.

* What doesn’t? Stuff you buy. Status of a shallow sort. Whatever you imagine other people think of you (it doesn’t matter; all that remain is how you make them feel).

* Not knowing about or accessing the power of psychedelics. For a long time I imbibed and accepted the ’60s or ’70s narrative that psychedelics were for losers and could make you go mad. Michael Pollan’s book How To Change your Mind was essential here.

* Being afraid to be a beginner again.

* Chasing the projects of youth too far and too long.

* Being overly accepting of the “age is just a number” idea. There’s some truth in this saying, but a lot of cope, and it’s possible to get the truth without the cope. Most of us prefer the cope, however.

* There’s a lot I can’t control—including most things—but I can control my attitude. If I choose to. The “choosing to” is hard.

* You’re the sum of the five people you’re closest to and with whom you spend the most time. So choose well. I’ve often not.

* Smart, competent people congregate in particular places, and I wish I’d spent more time in those places and less time not in those places.

* Pretty much no one accomplishes as much alone as they do in groups dedicated in common goals and mutual improvement. I’ve spent a lot of my life searching for and not quite finding those kinds of groups, which makes me think about what I could’ve done differently.

* In different times and places, different important things are happening. I got overly interested in the dying dregs of literary culture, and have underinvested in what’s uniquely happening now. There’s still some utility in literary culture, but there’s a lot more elsewhere.

* You can’t do two things at once and multitasking is closer to no-tasking. Pick whatever you’re working on and ride it out. Cultivate flow.

* Some people are not going to get it and need firm boundaries. When you, or I, identify those people, pick the boundaries and hold them. The people who don’t get it also often least understand and respect boundaries.

* Life’s complicated and people have all kinds of things going on. Whatever people are doing probably makes sense from their perspective. Which doesn’t make what they’re doing right, but it may make it comprehensible.

* I don’t regret time spent building, making, and doing things. I do regret excess time passively consuming, particularly video.

* Habits compound. Including bad ones. The bad ones I regret, although I won’t list them here.

* Impatience with the right people is really bad. So is losing one’s temper with the right people.

* Incentives matter.

* Abundance is good and scarcity bad. Work towards abundance but don’t be ruled by material things either.

* No one, including me, gets to the end and is happy about staying on top of email. But don’t totally neglect logistics either. They have their place, typically at the end of the day.

* The people who win are the ones who love and master the details. And the ones who master the right ones. I too often mastered the wrong ones (like the aforementioned investing in the dregs of literary culture).

* Something else I don’t regret, and a common pitfall avoided: wasting a lot of time on “social” media, TV, and other forms of semi-addictive junk. I’ve made mistakes

* Being mean when I didn’t need to be, which is almost all of the time.

* Understanding that tact can, properly used, enable directness.

* Not looking into that thing on my tongue in July 2022, when I first noticed it, but that is very specific to me and probably not generalizable.

Reading through these, I realize that a lot of them are more about my generation than me as an individual: I made a lot of the same dumb mistakes a lot of other people made. When I was young, I thought I was different, and totally in control of my own destiny—and everyone else probably thought so too. And yet it turns out that I erred in extremely common, boring ways.

Are you taking care of yourself?

August 9, 2023 By in Essays, Personal Tags: , , Leave a comment

This essay is by my wife, Bess.

“Are you taking care of yourself?” Francesca asks. It’s a fair question: my husband, Jake, is dying of a metastasizing squamous cell carcinoma. I say I don’t know whether I’m taking care of myself, and Francesca asks if I’ve gotten enough “me time.”

I think Francesca means: Am I sleeping? Eating? Bathing? I sniff an armpit, and peek down at my waistline. I’m down to 116 pounds, a weight I haven’t seen since senior year of high school, but my hair isn’t harboring small critters and I smell nice, like Dr. Bronner’s peppermint body wash.

I’ve heard the questions about taking care of myself before, but when well-meaning friends ask if I’m taking some time for myself—an analogue of asking if I’m taking care of myself—I laugh. My big concern is that I’m about to get way too much time to myself.

“I bet you look killer in a swimsuit,” Francesca says, to make me smile, not because she means it. She’s Italian, so what she really means is that if she weren’t 2,500 miles away, she’d force feed me pasta until I felt the full force of her calories and affection (which are the same). Only a select few people have asked “Are you taking care of yourself?” and meant it. Some know that my new figure is secondary to the stress and starvation diet I’d accidentally adopted when Jake’s tongue was surgically removed due to a recurrence of that squamous cell carcinoma, and they still say I look good from having lost weight.

Like it’s a consolation prize.

I defend myself to Francesca, saying, “Listen, not a single tooth has fallen out in the last three months, and it appears that I still have most – but realistically, not all – of my hair. Which has a white patch now.”

She makes a clucking sort of tut-tut sound, like I’m a simple child, and asks, “How can you take care of him if you don’t take care of yourself?”

Easily. I like spending time with him. I worry that, soon, he’ll either be killed by cancer or suffer so much that he justifiably chooses to exit. So many people have equated self-care with me taking some time away from the apartment, the hospital, the appointments—time away from Jake—that I get the impression a surprisingly large number of people don’t much like their spouses or long-term significant others. Being away from him, especially right now, isn’t a relief, it’s punitive. Francesca and I chat some more and she admonishes me to make sure that someone takes care of the “caregiver.” And then Francesca goes back to her life and I go back to reading, researching, trying to find some magical combination of medications or the perfect clinical trial that might save Jake. I want to fix. I want to find the right thing to do.

And, I believe, so do the people asking me the dreaded self-care questions. They are nice people who care about me. They want to  figure out the right thing to do and to say.  They also want to fix it. A clinical trial might help, but barring that, the best most of us can do is sit with the situation and be present. Sometimes, most of the time, there is no right thing to say. And that’s fine. Some situations suck and there are no words to make them not suck and there is nothing people can do to make them not suck. American culture infuses us with the desire to help and fix and suggest (things I’ve done too), but some situations can’t be helped or fixed or suggested away, and the hardest thing to do is to sit in discomfort with the truth.

On a recent evening walk with one of our closest friends, the day before that friend left to go home to New York, Jake said to him, “I’m sorry if I’m not very good at saying goodbye, but it’s my first time dying, I’m learning as I go.” It’s my first time doing this, too. At first I’m not sure what to say to friends who want to know if I’m taking care of myself.

Lately, I’ve been thinking a lot about what “care” means. When (numerous) hospital people call, they usually ask if I’m Jake’s “caregiver.” This translates, I guess, into wanting to know if I’m the person who makes sure he doesn’t pass out when he gets up to go to the bathroom after chemo, grinds his meds for his peg tube, and worries about keeping the areas around various post-op wires and tubes clean. They confirm that they can call my number to schedule appointments, review test results, and schedule delivery of medical supplies.

They’ve never asked me if I am the person who takes his hand in the dark while he’s sleeping and whispers to him that we’re connected forever by an eternal golden braid. He doesn’t have a tongue any more, having had a “total glossectomy”—which is medical terminology for “cut out the whole tongue”—meaning he can’t chew at all, or swallow normally. They never ask if I’m the person who burst into tears with joy when he learned to swallow again, a little bit, and managed to get down a pureed cookie a few days ago; he actually tasted the cookie with just the tastebuds left on his hard palate and esophagus. They’ve certainly never asked if I am the person who tells him that not only is he loved, but who gives him a solid grope and reminds him that he’s still very, very sexy.

You can hire “caregivers” online. It’s a job description consisting mostly of a hospital’s definition. I don’t think—though I could be wrong—that they provide a few of the services I render, but not the best ones, not the loving ones.

If caregiving is officially about physical and administrative upkeep—what do people think I, a person who doesn’t pass out when she goes to the bathroom, can swallow pills, and has no tubes to clean—need to do to care of myself?

What secret things do I need to whisper to myself in the dead of night to keep from falling apart?

Because that’s really what the question about taking care of myself is: What am I doing to make sure that I make it through this experience in one piece? For him, and for myself.

If the internet and well-meaning friends are to be believed, the well from which I give is running dry, but I’ll have more energy after a massage, a glass of wine with a girlfriend, a dinner out, a few hours a week in the gym to get some endorphins going, and a therapist. A therapist who’ll charge me $250 and hour to tell me I should sleep, get a massage, a glass of wine with a girlfriend, and exercise to get some endorphins going.

“No, you’re wrong, the therapist will help you figure out what it is you need,” one of my other well-meaning friends says. Well, what I need is for Jake to not die. And that is probably outside of the therapist’s scope of practice. But because I love this well-meaning friend, I say, “I’ll think about it.”

I think I find the question of “self-care” so absurd because no amount of meditation or yoga can or will change the fundamental truth: watching the person you love die means accepting that parts of you die with them. You can’t save them. You can’t save yourself. I will never be the same. I suspect accepting that truth is the most caring thing I can do for myself.  

The night before Jake went into the hospital to have a massive surgery to remove his cancerous tongue (a surgery that involved splitting his lip and jaw in two, flaying his face and neck open, and replacing his tongue with a “flap” of tissue from his thigh), we got married. He was having debilitating headaches and I wasn’t convinced he was going to make it through the night, or through surgery; I’ve never been so relieved to see another human being as I was when I saw his swollen, anesthetic-addled face in the post-anesthesia care unit (PACU). Alive.

All I wanted to do was sit sentinel in the hospital to make sure he stayed that way. Not just as a physician (though being one certainly helps), but as his new wife.

For the first few nights in the hospital, a nurse came every hour to check the flaps’ blood supply. Nurses responded to call lights. Nurses made sure he had his meds. You couldn’t have asked for more attentive care, or a better nurse-to-patient ratio—especially with today’s hospital staffing. The point is, despite the platinum-level care, I couldn’t relax unless I was in the room—watching, waiting to see if he needed anything, and quickly.

For the two weeks after his total glossectomy, the nurses would tell me I should go home to get some sleep. His Ear Nose and Throat doctor, Michael Hinni, who is probably the most considerate surgeon I’ve ever met, told me that I wasn’t allowed to stay in the hospital 24/7, because I needed to get some rest. I needed take care of myself. There were those words again.

And yet, I inflated my Exped MegaMat camping pad and wedged it across the reclining chair the hospital provides for family to sleep on.* There, during the day, I could make sure Jake knew he had company. I could monitor meds and orders, I could talk to the doctors, I could double-check what was happening—even though the doctors and nurses were already keeping track of everything. At night, I could press a button to call the nurses if he had a mucous plug in his the tracheostomy tube (“trache”) and felt like he was suffocating. If I could only rest when I knew he was within reach, I wasn’t going to get any sleep at home. How could I, when I’d be wondering: what was happening at the hospital? Was Jake okay? What if he wasn’t? How does anyone think that the simple act of being physically distant from the situation makes the mental load better, not worse? Being there was taking care of myself.

Of course, the one night I was convinced to go home and sleep, Jake almost passed out alone in the bathroom, while he was attempting a stool “self-disimpaction,” due to constipation caused by the opiates he needed for pain control. The nurses apparently wouldn’t help with that, and didn’t stay in the bathroom with him; although it sounds like the butt of jokes, for someone just after surgery, self-disimpaction is a dangerous act. Knowing I could have helped was the end to further nights in my own bed. We want so badly to have control, and, while I didn’t think I could stop bad things from happening, I wanted to be there to stop them from being worse. It was for me as much as for him. Really, it was more for me.

I’m an ER doctor. ER docs are routinely expected to care for patients when they themselves are in labor. Or have appendicitis. Or have a fever of 102. Or are emotionally distraught from worrying that their husband is going to die. As long as you show up to take care of others, that’s all that counts in emergency rooms. Some colleagues asked how Jake was doing, and if I was okay—often in the kind of tone that assumed I’d respond in the affirmative. Because that’s an implied part of the job: being okay, even when you’re not.

I spent over a decade being expected to separate my personal needs from my ability to address the needs of others. That never appeared in employee handbooks but it was everywhere, a cultural miasma that seemed bizarrely opposed to what medicine is supposed to be about. I wasn’t used to the type of concern I was getting once I crossed the threshold from doctor to patient’s spouse upstairs. It was strange. Didn’t you just do what you had to do, and then push through the moment when you thought you couldn’t? Didn’t you dissociate? Isn’t that how you survive?

Near the end of the hospital stay, Jake and I watched videos describing how to take care of the various new medical devices Jake would need to breathe and to eat and to take pills. There was a video for caring for the trache. Another video for how to care for the peg tube, the peg tube being the tube that connects the outside with the inside of his stomach. For the rest of his life, he’ll ingest most calories through the peg tube. There was even a video describing how to carefully crush a pill using the plastic crusher (spoiler alert: twist to the right and don’t use your teeth, both of which also apply to beer bottles).

Jake survived the surgery and the hospital recovery, and I survived too. I’m writing this in August 2023, and we’re both at home, but the cancer has returned: at least four locally recurrent tumors in his neck, and possibly two metastases in his lungs. I don’t know how long Jake has, and part of the answer depends on finding a good clinical trial. Trying to find one of the better clinical trials is my self-care right now; almost no one survives long with what Jake has. Recurrent head and neck squamous cell carcinoma (HNSCC) kills. Chemo may give him more time, measured in months, but it isn’t curative. Nothing we have is. Barring a miracle that seems increasingly out of reach, he’s going to die.

So I find myself missing those simple, clearly digestible videos about trache care and peg tube cleaning and pill cutting. I wonder, where’s the video that tells you how to find the clinical trial that will put your terminal husband into magical remission? Where’s the video that tells you how hard it is to hold your husband’s hand when he says goodbye to his closest friends, one after another, for the last time? How do you to plan to have a baby he’ll probably never meet? How do you deal with the tears when you talk about cremation, because it’s relatively eco friendly, and getting a plaque on a park bench in New York City, so people have somewhere to go when they want to be with him? Why isn’t there a primer on how to say goodbye to him yourself?

The truth is, right now caring for Jake is mostly a matter of the heart and of logistics. In the month after surgery, and during the first week of his first round of chemotherapy, a lot of my attention was spent monitoring physical practicalities. Then, he improved. Before the cancer circus started, Jake was an energetic person—in the gym, riding bikes, taking long walks, extolling the virtues of the standing desk, working, learning, doing. For a dying man, he’s still surprisingly lively, and very much himself. The other day, for example, he moved a bike that had been living in our common room into his office, and when I asked what had happened to the bike, he innocently asked: “What bike?” And he continued to obstinately pretend not to have known about the bike in our apartment until I finally thought to check the office. He looked extremely entertained. This is normal Jake behavior, and I was equal parts infuriated and relieved by it. I should’ve known better by now and checked the office right away.

He makes me dinner in the Instant Pot, most often using the slow cooker setting. After peg tube feeds, we go on walks. We still have moments when we talk about ideas and books, and where we read together. We’re a book club hiding in a marriage. I cry a lot—I am what I am—and mostly, I spend the bulk of my day on the Sisyphean task of searching for clinical trials.

It’s good to have a project. Without something to focus on, I’m like one of those domesticated African Grey parrots who pluck their own feathers out for want of something to do. I try to do as many of these things within reaching distance of Jake. Even better if I can have a hand or an entire limb draped over him.

We are trying to carry things out the way we always have—together. Jake says he’ll make me dinner until he can’t. Both of us fear that the moment he can’t is coming, soon. I puree him pastries and call about clinical trials. I cannot feel more loved than when Jake hands me a bowl of lentil soup, and the act of eating becomes a comfort to me. I’ll be 117 pounds in no time. And, hopefully, he feels something similar when I get his name added to another trial waitlist and oversee appointment scheduling. Finding ways to take care of him is taking care of myself. And vice-versa. Being asked if we’re taking care of ourselves, is, in itself, a form of being cared for by others, from afar. I’ll try to hear less of the actual question and more the intent: We’re worried about you both. We hope you’re doing as well as you can, day-by-day, until the darkness takes him.

So now, when I’m asked: Are you taking care of yourself? I’ll answer, honestly, “no.” This isn’t the time for self-care; I have decades of that in front of me. We’re caring for each other. 

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

*If you’re never slept on one of these chairs, know that they’re terrible, and they’re also ubiquitous. Eventually in your life, you you’ll probably sleep on one, for tragic reasons similar to mine, and, when you do, realize that the one un-padded area is the one where you hip will land if you try to sleep on your side. But the camping pad, along with a blanket wedged underneath the parts that dip, turn those chairs into a passable sleeping surface. Try to remember this information, because the most important thing is that this sleeping surface will be five feet from the person you love most.

If you’re involved in drug development and have first-hand knowledge of the FDA’s torpor, get in touch

August 2, 2023 By in Culture, miscellaenous, News, Personal 4 Comments

The title says it: if you’re involved in drug or medical development and have experienced the FDA’s torpor, or vengeance, consider getting in touch; anonymously is fine. I want to make explicit something a few people caught in “I am dying of squamous cell carcinoma, and the treatments that might save me are just out of reach:” many of the people with first-hand knowledge of the costs of the FDA’s slowness don’t want to speak out about it, even anonymously. They’re justifiably worried about their lives and careers, as well as what appears to be the FDA’s penchant for punishing companies or individuals who criticize or want to reform it. So the people who know most about the problem are incentivized not to speak up about it, kind of like the way mafioso were discouraged from discussing what they knew for fear of retribution. Some of them will talk about their experiences and knowledge over beer or coffee, but they won’t go further than that.

There are reform efforts and at least three serious people I now know of who are working on books about the invisible graveyard that I’m likely to join soon—and perhaps become a mascot for: a million deaths are a statistic but one is a tragedy, as they say. If the life and death of one man can stand for the millions who have died, maybe people will pay more attention. So if you have any direct experience that you’re willing to share, including anonymously, consider doing your bit for reform.

Some of that experience might include:

* General FDA slowness and lack of responsiveness.
* The sense of vendetta—that criticizing the FDA in public, especially over specific decisions, will lead to retribution later.
* Patients who wish to try drugs but can’t.
* Scientists, doctors, or companies that deliberately slow down what they’re doing.
* Whatever else I might be missing.

Many observers are aware of these problems but also the extent to which many people with rich specifics are reluctant to share those specifics, for good reason. I will respect anonymity and am aware of people working on projects designed to help FDA reform—and, hopefully, to save the lives of people like me, who are suffering from maladies that are likely curable with existing technologies, if the FDA made those technologies legal to consistently test and try, and if the FDA worked harder to make the existing trial process faster, easier, and more transparent.

The FDA situation is a specific example of the country’s love of process and bureaucracy, rather than a love of effectiveness and success. We’re suffering from huge bureaucratic drag in doing anything; we see the same general problem recur in building out subways or other forms of transportation infrastructure, in building new electricity transmission lines, in permitting new electrical generating capacity, in building new housing, in the Nuclear Regulatory Commission (NRC), and in the FDA. Works in Progress is a good publication covering these kinds of issues. We’re stuck with the sclerotic processes implemented in the ’70s instead of the dynamic, transparent, and far faster processes we should have today. We’re all suffering the results, some of us more acutely (like yours truly, who is doing for lack of large-scale, deployed, and debugged customized vaccine technology) and some of us less directly.

Anything that is small enough to build in a factory and ship via container is cheap and abundant; anything that requires opaque regulatory approvals or that goes into the body is expensive and tragically scarce. Ezra Klein and Derek Thompson are writing a book presently titled Abundance: What Progress Takes, which is about this subject and which I’d write about if I were likely to last until April 2024.

Practitioners on the ground, like doctors, see the deaths of their patients. The FDA is more concerned about political issues. There’s nothing like watching people die to alter your risk tolerance.

The author may be doing poorly, but he still exists, as of Aug. 2, 2023.