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.