Part of being ready to die comes, I think, from psychedelics; I wrote in “How do we evaluate our lives, at the end? What counts, what matters?”: “Bess (my wife) and psychedelics taught me to love, and the importance of love, and yet too soon now I must give everything back.” There’s a longer, yet-to-be-written essay about how psychedelics cause me to see myself as a tiny instantiation of the vast, interconnected human whole, which will comfortingly go on even when I flicker out. Michael Pollan’s book How to Change Your Mind is great and also covers a lot of existential territory. I’m looking for a copy to quote from and can’t find it, because I’ve given so many copies away. Pollan describes the way psychedelics are being used palliatively for end-of-life care, which is, strangely where I now find myself. Fortunately, I have a Kindle copy, and now I can authoritatively say that Pollan writes about how “researchers [have] been giving large doses of psilocybin—the active ingredient in magic mushrooms—to terminal cancer patients as a way to help them deal with their ‘existential distress’ at the approach of death.” Moreover, for many people, “psychedelics [help] to escape the prison of self.” I guess I can say that psychedelics prophylactically assuaged my fear of death, the way Zofran might be taken to prevent nausea.

Even before the present circumstances, though, from psychedelics I learned how not just to know but to deeply feel and internalize that we’re all part of the show for such a short time, and then it’s someone else’s turn, and that is okay. Until science radically expands healthy lives—which will be great, but it’s not clear whether we’re near to or far from that series of breakthroughs—we’re not here for long, and then we yield up the gift, whether willing with grace or unwillingly with fear. But the other part of being ready to die comes from how much living physically sucks for me, much of the time, with a lot of struggles concerning breathing and mucus.

The breathing and mucus are related; if you’ve spent much time around me, you’ve seen and heard that I’m endlessly trying to hack up mucus—and sometimes succeeding. If you’ve not spent much time around me, take my word for it, and enjoy that no demonstration videos are included. I’m constantly attempting to clear the back of my throat and spit mucus up. The attempts to hack up and spit out mucus can sort of work for a short period of time, but even when I hack up a huge blob of mucus, the feeling of needing to do so again, or drowning, returns within a few minutes. Often, I’m attempting to hack up mucus that won’t quite come out. I struggle for hours against some plugs, knowing that they’re in my throat but unable to expel them. It feels like I’m heroically and single-handedly supporting the Kleenex industry with all the tissues I’m going through.

I can never breath normally. Never. Not even when things are going relatively well. Contemplate what that means. You’re probably breathing normally right now, and not even noticing that you’re breathing, which is what my life was like until the massive May 25 surgery, which left me without a tongue. The prior surgery in October 2022—my first for the squamous cell carcinoma—and even the IMRT radiation from December 2022 to January 2023 were not easy, but I’ve described them to friends as “predominantly cosmetic damage.” My body repaired itself tolerably well in response to the first bout of treatment. By March 2023 I could speak and swallow within spitting distance of normal. Recovery wasn’t instantaneous but most of my original functions and functioning returned. Strangers might have wondered about the neck scar, where Dr. Hinni,* the ENT who led the surgery, removed all the lymph nodes from the left side, because squamous cell carcinomas of the neck usually metastasize first to the lymph nodes. Those lymph nodes were all clean, leading Dr. Hinni to think that, after a successful surgery where the margins were clear, and radiation to kill any remaining errant cancerous cells, I’d be healed.

During my first appointment with Dr. Hinni, in September or October 2022, after reviewing treatment options, he leaned forward, took my hand, patted me on the shoulder and said, “Don’t worry. This isn’t going to be what kills you.” If this were a novel, an editor would chide me for a too-obvious Chekhov’s gun. “Everyone knows what will happen if you write this,” the editor would say. But I didn’t anticipate my life would be narrated by a heavy-handed horror author. Joke’s on us. On April 26, 2023, the first post-treatment PET scan showed a hot spot that turned out to be a squamous cell carcinoma at the base of the tongue. Half the tongue was supposed to come out, and be replaced with a “flap” of muscle taken one of my quadriceps. Instead, when Dr. Hinni got into the surgery, he found that the cancer had spread across the base of the tongue, invading not only the left lingual artery, which provides blood flow to the left side of the tongue, but the right lingual artery as well. Without those arteries, the tongue can’t survive.

Dr. Hinni also discovered that the tumor had extensive perineural invasion—meaning it latched on to, and probably traveled to the base of my tongue through, important nerves controlling neck muscles and oropharyngeal sensation. Some of those cancerous nerves had to come out, and I guess at least one controlled mucus, because today I feel like a mucus factory. The inflammation from the massive surgery and the tumors creates yet more mucus. The radiation, which, while minimally affecting my cancer, left me with the gift of salivary gland changes, so now my body produces a particularly thick, sticky mucus. I can’t properly feel that mucus because I’m missing sensation in half my interior oropharynx. Because of the surgery and nerve removal, I can’t swallow normally to clear the mucus. It’s difficult to wrap my head around the knowledge that I can’t feel half my throat, because it’s hard to imagine a more pronounced feeling than the one I live with day in, day out. This mutant mucus either gets created in my mouth or throat, or flows relentlessly downwards from the back of nose.

Consequently, every breath enters my nose or mouth and triggers a Rube-Goldberg-like chain reaction of misery. The mucus captures my attention and sends a signal that says: “Hey, you can’t breathe correctly. Attend to this.” With every breath, that signal registers, encouraging me to try to clear my throat or else warning my conscious mind that I might not be able to breathe. This happens all day, every day, as if on a mechanism whose trigger to start the process over is the moment I finally clear my airway. It’s like being in an ER with a beeping airway machine that never shuts off, ever, and that can’t be fixed or silenced. While I tried to dismiss earlier surgery and radiation as “cosmetic damage,” despite the struggles they brought, that massive May 25 surgery is “structural damage.”

I’m like Sisyphus pushing his boulder up the hill, except the boulder is mucus, which seems worse—at least a boulder doesn’t stick to the hill. I’m a little better at swallowing than I used to be, but I can’t tilt my head back much to get enough of an assist from gravity, because my neck is so tight from surgeries, from scar tissue, and from radiation. Swallowing—one of the acts that might help—is made far harder by neck tightness. My neck is getting tighter, not looser, over time, because radiation scarring tends to present many months after the treatment. And the area is filled with post-operative scar tissue. And, maybe most importantly, this is where the tumors are growing. I’m trapped in this tightening, constricting, gooey head-and-neck system that I can’t escape from and that causes me to constantly be spitting into tissues or sinks or the ground or whatever other appropriate receptacle I can find.

My neck, and my universe, feel steadily more constricted.

When I’m infusing food—which eats like four hours, daily—through the peg tube in my stomach, the mucus problems become worse, as if my body is readying itself to take food in through the mouth, but none comes via the oral route. When I wake up in the morning, or at night, I’m dry, and the mucus plugs are even harder to expel than they are during the day. When I try to speak, I’m often stymied by mucus rattling around and preventing my vocal chords from vibrating freely. To speak, I must try to hack up mucus first, which isn’t a great way to start or have a conversation.

So often I feel disgusting all day, every day, because of the endless effort to hack up mucus. Sometimes I succeed. It’s gross for me, and it’s gross for whoever might be around me; friends are very polite to say that it’s fine, and I appreciate the politeness, but even if it’s fine for them, it’s disgusting for me. I leave trails of spit-out saliva and spit-up tissues wherever I go. All day I’m physically weak. All day my body hurts from lack of motion. Those cancerous nerves had important functions, and, while I obviously understand why they had to be removed, they’re part of the irreparable structural damage, which can’t be wholly assuaged. If you’ve guessed that these physical problems lead to poor sleep, you are correct. I’m very different, in worse ways, than I was.

When the tracheostomy tube came out—I had what amounts to a plastic breathing tube sticking out of the base of my neck for six or seven weeks after the surgery—I thought that I was making irreversible progress. Instead, getting the trache removed did increase comfort and wholeness because there wasn’t a foreign body poking into and out of my neck, but I also had to learn to suffer breathing through and battling the mucus,, I don’t want that tube back, but it did bypass the mucus junction.

I look for upsides. I let Bess’s love succor and sustain me, I try to make progress, I have moments when I laugh, I celebrate the wins—and yet the base fact of being irreparably damaged remains. The struggles with breathing remain. The persistent intrusive thoughts about whether this thing, life, is worth it, remain. They’re not questions therapy can help with. They’re questions intrinsic to the damage.  

Without those nerves between my neck and mouth and nose, and without a good ability to swallow, my lot is constantly fighting the mucus attacks. I feel like a human mucus factory. What’s the end of this? When is the end? Sometimes, I’m ready for it.

Look, since you’re probably thinking it, and before you point it out, let me say that I’m aware that there’s worse suffering in the world than hacking up mucus and feeling like I can’t breathe. There are displaced persons in war-torn countries, and persons who may have experienced horrible brutality or seen horrible brutality visited on their families or friends. There is the savagery and prosecutable cruelty the Russian military is inflicting on and in Ukraine. Comparatively, there are people worse off than me who seem to find ways forward towards meaningful lives. In some ways, my material universe is still impressive, and I’m blessed with love.

Napoleon Chagnon’s memoir Noble Savages: My Life Among Two Dangerous Tribes — the Yanomamo and the Anthropologists talks about what everyday life among the Yanomaö, a series of native peoples and tribes then living in Brazil and Venezuela, is like. Chagnon says he is “not ashamed to admit that” when he first met the Yanomamö, “had there been a diplomatic way out, I would have ended my fieldwork then and there.” The physical circumstances were that tough. Chagnon writes: “imagine the hygienic consequences of camping for about three years in the same small place with two hundred companions without sewers, running water, or garbage collection, and you get a sense of what daily life is like among the Yanomamö. And what it was like for much of human history, for that matter.” To Chagnon, the village smells of “decaying vegetations, dog feces, and garbage.” Yanomamö men appear to spend a lot of their lives with “strands of dark green snot [dripping or hanging] from their nostrils” because of their fondness for snorting a hallucinogenic drug called ebene. Men continually engage in small-group warfare and a huge proportion of adult men die in war, at the hands of other humans. A huge proportion of adult women die in childbirth, and many are abducted and then forcibly married to one of their abductors or into their abductors’ group. And that is normal life. Maybe that was normal life for most humans in most of human history, as Chagnon notes. I’ve never spent much time fantasizing about living in a past time, because life then was overwhelmingly filthy, mostly impoverished, and there wasn’t access to basic antibiotics, let alone chemotherapy, radiation and clinical trials.  A future era? That I can and do imagine. I also imagine that I would’ve quit fieldwork even without a diplomatic way out. Maybe not on the first day, but as close to it as I could get.

“Normal” is a tricky word. Wherever we grow up is normal. Normal for me, now, means dealing with the mucus and drowning sensations. I feel recent suffering keenly. Enough suffering makes a person feel less than human, including me. Humans can get used to so much; can I get used to my problems? I’m not the first to wonder, as Bess did: “How much suffering is too much?” Viktor Frankl wrote extensively about suffering and human life, most notably in Man’s Search for Meaning (a favorite book). “Yes to Life: Viktor Frankl survived the Holocaust and created a new psychology in which the search for meaning—not pleasure or power—is mankind’s central motivational force,” by Samuel Kronen, is about Frankl, and it describes how “Life carries the potential for meaning under any circumstance.” I buy that argument, albeit with a heavy emphasis on the word “potential.” The gap between the potential and actual is often large, and it’s up to the individual to find and create meaning in life.

Frankl’s endurance and his apparent ability to not merely survive but to thrive is exemplary; I’m not sure how well I’d do after finding that “Except for his younger sister, who managed to flee the country, everyone in his immediate family, including his pregnant wife, Tilly, died in the Holocaust.” In Frankl’s version of psychotherapy, which he called logotherapy, “One could even say that the meaning of life is other people.” So how does one go on when the other people who are most important to you are murdered? Frankl’s life and writings are his answer. Like Dan, he seems to have developed a stunning ability to go on and remain positive in the face of adversity. As much as I admire Frankl, I find myself leaning away from this: “No amount of anguish or adversity can truly take away our humanity, he says. Being human precedes our capacity to be productive, functional, or even mentally sound.” I wonder whether being human is a binary thing or a matter of degrees; I lean towards the latter, which you can see in my comment about how enough suffering makes a person feel less than human.

I’m not able, or maybe willing, to sustain the positivity and meaningfulness of Frankl or Dan. At some point, to my mind and temperament, it’s not worth going on. But I can’t precisely demarcate point where there’s too much suffering or too much privation, though I’ve considered many scenarios. That I’m still here, right now, indicates the present privations aren’t too much. Not yet. Much has been taken from me, but I still have Bess’s love. I can still locomote. Speech is garbled but possible. 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.

Despite the mucus, I have some victories: I can swallow some food and have gotten steadily better at swallowing. Maybe a month ago, my friend and speech pathologist (in that order) Jessica Gregor helped teach me to swallow again. 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, I swallowed some ice cream slurry: the Van Leeuwen’s honeycomb flavor. We melted it and blended it with some extra milk, to thin it. And, although I was intensely skeptical that this would result in a meaningful sensory experience, there are taste buds at the back of the throat and esophagus. So I could taste ice cream. Since that night I’ve tried lots of things. Anything acidic, like lentil-soup slurry with too much lemon, doesn’t work well yet. Anything salty, same problem. But savory foods work and so do sweet ones. There’s a fun bakery and wine shop in Tempe called Tracy Dempsey Originals that we’ve been going to. Tracy Dempsey makes spectacular ice cream flavors—particularly her cardamom with fig jam. It turns out I can eat things like cookies and brownies if they’re blended with milk or coffee.

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.

The victories aren’t complete. The mucus still interrupts eating: anything I swallow seems to get trapped in mucus. I swallow some food, and, when I’m done, I have to hack up food-infused mucus. There’s no clear path, I guess, from mouth to stomach without traversing a mucus swamp. The mucus swamp seems to increase the drowning sensations from slurries, and the sensation that food is going down the airway, even when it’s not. Jessica did a “Fluoroscopic Swallow Study,” which essentially means taking an x-ray video of me swallowing, to see where the swallowed substance goes. It confirmed that I’m not swallowing into my lungs, though every time I swallow I feel like I might be. That sensation, like the drowning sensation from mucus accrual, is disconcerting, but what can I do about it? Very little, it seems. Mucinex, suction, saline nebulizers and increasing my water intake does something, sort of, but not enough. For however long I live—and Bess has a good lead on a clinical trial, as well as an essay in the works about how the clinical trial process actually works (and how insane the process is)—the drowning sensation will be haunting me.

But I do get to taste some ice cream again, before the end.

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

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See also: “How much suffering is too much?“

* If you have the misfortune of having a head or neck squamous cell carcinoma and live in the Phoenix area then, as of this writing, you want Dr. Hinni or Dr. Chang at Mayo to operate on you. Many things in my life have gone wrong, but Dr. Hinni operating on me is one of the things that’s gone relatively right.