Food by mouth, again, but blended, and with an impaired ability to taste

Although this essay stands alone, it’s also part of a loose trio: Part I, “Food and Friends,” is here, and Part II, “Edible food-like substances,” is here.

Cooking used to play a huge role in my  life, and then I lost my entire tongue to cancer. For months, every calorie had to be injected directly into my stomach through a PEG tube and, as you’d imagine, that was not a satisfying way to live. Maybe one day human metabolic processes will be fulfilled through expeditious, non-food means, but it seems to me that we’re far from that day, and until then we have to rely on food. A huge part of human culture is built on and around food. Not being able to eat is painful for the obvious reasons, and for subtler ones, like being excluded from the huge part of human culture that I’d once prided myself on understanding and navigating.

In July 2023 I swallowed again for the first time, and found that the taste buds in my cheeks, hard palate, and esophagus still work, which is a lot better than not being able to taste at all, but still a lot worse than having a tongue. Over time I’ve gotten better at swallowing: two months of nothing by mouth, combined with surgical trauma, took far longer than two months to remedy. Every swallow demanded great concentration: to mess up through inattention meant choking and surviving or, possibly, choking and dying. As children we learn to eat and swallow, and by middle childhood doing so is automatic. I had to re-learn so much: walking, talking, eating, swallowing. I read the header of this section, “food by mouth,” and realize it sounds redundant: isn’t all food taken by mouth? But no, it turns out, food for people with PEG tubes happens differently.

I didn’t have to re-learn cooking, although I can’t easily taste test. Cooking has become an exercise in trying to throw and catch a ball with one eye closed—I may bobble the ball at times, but I’m familiar with the physics, and one eye enables me to try, anyway. One of my earliest useful acts happened in June 2023, probably too soon after I got home from the hospital. I was waking up every morning between 5 and 6 a.m., because mucus attacks prevented me from sleeping properly and consistently. In those early hours, Bess was usually still in some exhausted, unrestful, but essentially unconscious, state, so I couldn’t interact with her. My brain was still beset by recovery fog. However, I could by then walk short distances, and a Sprouts grocery store is about five minutes from our apartment. Being located next to a grocery store was a matter of luck rather than intent.[1] One of many follies of “urban planning” in the United States is that we prioritize parking lots over people, and parking lots over convenience. Most people have to drive a couple thousand pounds of metal to pick up a few pounds of groceries. One of the great virtues of our apartment is that we’re so close to a grocery store. We ought to stop forcibly segregating residential and commercial uses, so that many more people can live on top of, or near, grocery stores, bars, and so forth. The not-in-my-backyard (NIMBY) crowd has wildly and sadly won since the ‘70s, making the way Bess and I have been able to live—within walking distance of groceries—a rare privilege instead of an invisible commonplace. The polio vaccine makes the disease unnoticed by modern people; if we gave people the freedom to build what they want on the land they own, living within an easy walk of a grocery store might be similarly unremarkable. Instead, we raise GDP while lowering quality of life by demanding that most of us drive everywhere, all the time. No wonder our healthcare expenditures are insane: we make illegal or impractical a common, easy form of healthy action. 

Given my physical abilities in June, Sprouts was just within walking distance, so that I could consider a recipe, note the ingredients, get over there, and get home before Bess woke up. I’d start the meal when she got up, to avoid waking her due to the noise from chopping or clanging pans. Hours later, the slow cooking would finish and Bess would eat, while I would inject food. Much later, she told me that she barely ate between May 25 and whenever I began cooking again: she felt that me making food was a signal for her to start consuming things again. At some point her parents gave us a Vitamix, and I used it to thoroughly blend the food I made into something with the consistency of Liquid Hope, and then injecting it into my PEG tube. Liquid Hope is good, but a diet consisting entirely of it can’t be ideal. I tried to run it through the Infinity Pump, which used a pressure mechanism to push a bag of Liquid Hope (the Liquid Hope in turn hung in a plastic 500cc bag on an IV pole) through a long piece of tubing attached to my PEG tube. The pump was forever getting clogged, getting clogged and beeping, getting clogged and beeping and exploding Liquid Hope everywhere, and generally driving my life and patience past frustration and into a ditch.  

Everyone has a philosophy of food, whether articulated or implicit, whether “I mostly eat microwaved pizza and instant noodles” or “I’ve never had Kazakh food: let’s try it.” Most of us probably don’t think that much about why we eat what we eat, and change comes from the relatively small, but vocal and experimental, group of people who do. Most often we do whatever’s most convenient, which is to say whatever most people around us are doing. To deliberately change is to incur high costs in terms of time and attention—time and attention that some people don’t want to devote to food, despite phrases like “you are what you eat” or the importance of food to health. Health, as I know too well, is one of these things that, once gone, is sometimes impossible to recapture, like a cat that gets out the door and darts into the bushes, destined for a coyote’s belly. I’ve never been a complete maniac for the absolute healthiest food, or healthy-coded food (I used to enjoy gluten, although it doesn’t blend well, so I’m not non-consensually bread-free), but a lot of healthy food tastes good, too, particularly if someone isn’t completely in thrall to the supercharged, overwhelming tastes of modern processed foods.

Before the cancer, and even now that I can swallow again, I’ve tried to eat, and make, a variety of things. Different foods are fun: all of us need variety in our lives, along numerous dimensions. Some of us need more variety than others, depending on the dimension in question (I have run into people who eat within a tiny range—often just simple carbs like pasta or pizza). Beyond being fun, I also connect variety in foods with Michael Pollan’s books and articles. In one famous article, for example, he says “We also eat foods in combinations and in orders that can affect how they’re absorbed.” Plus:

“The trace of limestone in the corn tortilla unlocks essential amino acids in the corn that would otherwise remain unavailable. Some of those compounds in that sprig of thyme may well affect my digestion of the dish I add it to, helping to break down one compound or possibly stimulate production of an enzyme to detoxify another. We have barely begun to understand the relationships among foods in a cuisine.”

One of the (many) problems with a mono diet is that we don’t know how foods interact with each other. Most Americans appear to get most of their calories from a tiny number of sources: mass-produced wheat;[2] sugar and “edible food-like substances” like high-fructose corn syrup; beef, chicken, and pork; and some oils/fats, like safflower oil. That tiny number of sources is listed in the number of calories. Yet “humans are omnivores, requiring somewhere between 50 and 100 different chemical compounds and elements to be healthy. It’s hard to believe that we can get everything we need from a diet consisting largely of processed corn, soybeans, wheat and rice.” It is hard to believe, and I don’t believe it. Grocery stores are stocking more foods than ever, for the minority of people who want to take advantage of them, while the majority of people are subsisting—not even thriving—on a tiny number of foods.

We can and should do better. I’m trying to continually expand the range of things I make and eat. Sometimes my range contracts—I used to eat a lot more lettuce than I do now, since lettuce neither blends nor cooks well. But, as noted previously, I’ve got access to a far greater variety of beans thanks to Rancho Gordo. Rancho Gordo sells xoconostle, too, which I’ve put in mole de olla, along with a spicy black bean and sweet potato soup that Bess loves. I’ve been experimenting with different chiles. I saw something called “golden berries” in Sprouts and bought those: they have a kind of a tangy-tart flavor in smoothies. Frozen passionfruit is available, so I picked up some of them. Dragonfruit are overly expensive but go on sale often enough that I can snag some and put them in smoothies, too.

Maybe none of this matters, and I see the comedy in the guy dying of cancer who is nonetheless concerned about whatever micronutrients golden berries or obscure dried peppers might impart. Clearly, whatever I’ve done isn’t working, since my interest in nutrition hasn’t stopped me from getting cancer and then cancer recurrences. But I like to think my choices matter, for Bess if not so much for me, now that my time is short.

Cooking, Bess tells me, is part of what attracted her to me at first: for our second date, I made her potato paneer curry from the Moosewood cookbook. I didn’t have paneer, so I substituted cottage cheese. She maintains that I got frustrated with how long the potatoes needed and served the dish with the potatoes still partially raw. I’m doubtful of that rendition but my mind was not chiefly on the potatoes; I had other issues to occupy me. Whatever I did seemed to have worked, and to continue working.

She was in med school then, and thus chronically harried for time. Despite lacking time, she’s always been someone who likes to eat, but, from what I’ve observed, she’s also someone who won’t do much of it unless someone else is nudging her to. She’ll subsist on a thing of takeout for a whole day, or buy a smoothie and sip it for hours. For some bizarre reason her parents never used a dishwasher when she was growing up, and when I first met her, she never used the dishwasher in her apartment. It took my example for her to realize that, as anyone would expect, a dishwasher is a great device. People who like to cook like—really like—dishwashers. One reason takeout is so popular in New York is the quality of takeout there, but the lack of dishwashers in old buildings is another. New York should really allow landowners to construct new buildings with modern contrivances like dishwashers.

The other day, I got back from an infusion in San Diego and wondered if the birria-style soup I’d left with her had been enough. Bess assured me it had, and yet when I looked in the fridge, it seemed like most of the birria was still there. I told her I was worried about her, and worried about what would happen to her after I’m gone; I said that it seems like she’d eat two gyoza and an olive and call that dinner. She looked spooked and confessed that the day before she’d eaten like twelve gyoza, and three olives for dinner. An eternal golden braid connects our minds, and I guess something must’ve slipped over that braid.[3]

We share food and a philosophy of food, which is large part of our shared philosophy of life (which includes similar views on walking, parking minimums, and predatory zoning restrictions). I once tried to date a woman who wouldn’t eat much more than chicken, pizza, French fries, and pasta—she was still young enough that this diet hadn’t yet caught up with her. We went out to dinner with friends once, and she was unhappy that people laughed when she ordered French fries at whatever real restaurant we were at. I replied with something like: “Then order something else!” An adult who eats like a child can’t be surprised when other people are surprised by childlike behaviors.

As I mentioned, Bess barely ate while I was in the hospital and after I got home, until I began trying to be minimally generative in the form of cooking. I encouraged Bess to eat. Although I couldn’t eat then, I didn’t want to deny the pleasures of the table to her, or to anyone else. Bess knew I didn’t begrudge her eating, but she said that eating when I couldn’t left her feeling emptier than before she filled her stomach. We did meals together, and she later confessed that doing something so fundamental to our connection alone felt like she was choosing to leave me behind, as if she was practicing for a future of tables set for one.

Instead, Bess said she imagined the time like I was running late for a restaurant reservation. She didn’t want to start without me. I appreciated her not wanting to shove that which I could no longer have in my face, but I wanted her to take care of herself. I also wanted, eventually, the connection that feeding people provided, even if my own relationship to eating had to change. Just because I couldn’t do something doesn’t mean others shouldn’t. Life will go on after me, and that is good. Many parts of life that I can’t partake in continue now, and that is the way of the world. In some grand sense our lives are temporary, and it’s what we pass to the next generation that most matters—including consciousness and life itself.

I’m against unnecessary suffering and in favor of creating a better world, whether through food or other means. A big part of creating a better world is creating that better world for those who come after me: that is why I’m against NIMBYism, in favor of building a better future in literal and figurative ways, and for bigger, better, and great technology and technological progress. There’s a selfish element to that last bit, in that medical technology is the only thing that might extend my life, but even medical technology is too late to save my tongue, and I’ll suffer from tonguelessness until the end. Freedom and technology create a better, positive-sum world for everyone. The people who are against lowering housing costs or restricting infrastructure are mistaken in their views of human flourishing. If I’d been smarter, I’d have focused my life on building the future, instead of reading books. We all make errors and that’s one of mine.

I don’t know why, but I still like reading restaurant reviews. It’s like a eunuch watching pornography, I guess: pointless. Yet I do it anyway. I don’t know why. There aren’t even good reviews of restaurants in Phoenix, so I tend to read reviews of New York restaurants—a place I don’t live and an experience I can’t have, which is doubly pointless. I guess I’m activating memories of times past. Proust has his madeleines, while I have Pete Wells’ reviews. But it’s not as good as doing the thing. I can blend and swallow takeout, now, which is a lot better than nothing, but even if I live far longer than expected, I’ll likely never eat in a restaurant again.

If there’s a thesis in my writing about food, it may be that food is often not just about food. I meant to write about food—the cooking of it, the learning about taste and texture profiles, the skills I’ve developed in the kitchen—but instead, I kept being drawn to the topics that food helps enable—to the stuff of life, which is to say, our relationships with other people. That’s what so much of food and culture are about. Write about one thing, and, as you weave that thread, it turns out that you—and by “you” I mean “I”—write about the whole world.

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


[1] Oddly, some people in my complex still drive to Sprouts, despite walking being faster and more pleasant. I think of such things when I read that 40% of American adults are obese, and another 30% are overweight. Ozempic is great, but how behavioral changes are possible, even at current margins?

[2] That article is titled “Bread Is Broken: Industrial production destroyed both the taste and the nutritional value of wheat. One scientist believes he can undo the damage.” As that writer says:

Before the advent of industrial agriculture, Americans enjoyed a wide range of regional flours milled from equally diverse wheats [the plural is deliberate], which in turn could be used to make breads that were astonish­ingly flavorful and nutritious. For nearly a century, however, America has grown wheat tailored to an industrial system designed to produce nutrient-poor flour and insipid, spongy breads soaked in preservatives.

Perhaps we should try something different—but, as with most things, that’ll require greater demand for better products from people, and most people are content with McDonald’s, frozen pizzas, Taco Bell, and so on. Sweetgreen’s market cap as of this writing is $1.2 billion; Yum Brands, which owns Taco Bell and other super commercial fast food chains, is worth $36 billion. 

[3] If there are any spycams in our apartment, I didn’t install them.

Food and friends, part 2: Edible food-like substances and the need to swallow again

Part 1 is here, although “Edible food-like substances and the need to swallow again” is meant to stand alone. Part III is here.

I went into the May 25 surgery that unexpectedly took my entire tongue weighing around 155 to 160 lbs. When I came to, I probably didn’t weigh much less than I had when the anesthesia hit, but I felt like the heft of my body had been replaced with the weight of all that had gone wrong, and I was what was left over. Insubstantial. Without appetite.[1] Although it’s a cliché that you feel dread in “the pit of your stomach,” I instead felt dread in my nasal cavity—a horrible nasal tube was anchored with a stitch into my right nostril. It snaked up my nose and down my esophagus, terminating in my stomach.[2] Tube feeds were how I “swallowed,” although I had no agency in the process: a nurse pressed a button on the machine and the machine pumped food, regardless of my feelings or sensations.

Any calories had to go in through that tube. To say I hated consuming calories via nasal tube is an understatement. If I’d had an “off, forever” switch available to me in those first days after surgery, I’d likely have flicked it. Instead, I had oxycodone and dilaudid, which weren’t as good as an “off” switch, but adequate doses did make me feel like I was nowhere. Like most medical treatments, though, oxycodone and dilaudid come with a cost: opioids are severely constipating, and taking them may have led to what was one of the most dangerous moments after surgery.

In the hospital, it felt like every 10 minutes something or other had to happen: medications, cleanings, probings, vitals. “Tube feeds” weren’t just unpleasant because of the uncomfortable tube— the feeds themselves were a source of both pain and nausea. The word “feed,” makes me sound like I went from being a man to some kind of farm animal or hamster or alien. Or may an alien hamster farm animal? Before the surgery I never once looked at Bess and said, “Hey, why don’t we sit down to feed,” or “Baby, let’s go out to feed.” And if I ever did, I was joking.

The tube feeds made me nauseous and gave me terrible reflux. Part of the problems no doubt came from the surgery trauma and all the drugs I was on. But the ingredients in the substance itself couldn’t have helped. I had two choices, or assignments, depending on who was in command of the tube feed situation on a given day: either Nutren® 2.0 (made by Nestle Health Science) or Boost® Balanced Nutritional Drinks. Calling “Boost” a “nutritional drink” is like calling a junkyard a “pristine Redwood forest.” Boost’s website lists the ingredients as “WATER, GLUCOSE SYRUP, SUGAR, MILK PROTEIN CONCENTRATE, CANOLA OIL, AND LESS THAN 2% OF COCOA. [. . .]” I don’t think humans are supposed to eat diets rich in glucose syrup (which is just another sugar), sugar (this is also a sugar), and canola oil (the writer and gadfly Gary Taubes wrote a persuasive book called The Case Against Sugar). Whatever the problems I was having with digestion, I don’t think those problems were aided by vitamin-infused liquid sugar solutions.

I was barely alive and unsure about which side of the life-death line I would wind up on, which was not an ideal position for investigating alternatives to Nutren® or Boost®. At some point, a few days after the surgery, interventional radiology installed a PEG tube, and that installation let doctors remove the nasal tube. Getting the nasal tube out was an improvement, although injecting Nutren® or Boost® via PEG tube wasn’t, as you’d imagine, a real satisfying eating experience. In the hospital, I got enough calories to not die, and I guess that was enough from a medical perspective, if not a human one.

The Mayo ENTs said I’d likely be able to swallow again one day, albeit by blending food. I didn’t believe them. I couldn’t imagine much of a future and drifted in a present defined by either miserable, excruciating pain and nausea, or by opioids that allowed me to feel like I didn’t exist. I got out of the hospital in early June, and food injections continued to be a massive struggle, in part because I didn’t get the right injection pump until two weeks after discharge. My digestion improved when a friend suggested I try “Liquid Hope,” a liquid food product made from actual foods. The ingredients include ones I actually ate before the surgery: “Filtered water, organic garbanzo beans, organic green peas, organic carrots, organic hydrolyzed pea protein.” Garbanzos, peas, and carrots are good for humans in the way “hydrolyzed palm oil” is not.

For someone who prides himself on cooking and likes to try lots of different foods, this period was hard, and made harder by the belief I wouldn’t eat for life. I didn’t get to swallow again until late July, when Mayo speech pathologist Jessica Gregor showed me that I could, despite my reluctance and fear of choking, and she lovingly bullied me (that is Bess’s phrase) into choking down a glass of melted, diluted ice cream. It was the first thing I’d tasted in two months. It was a revelation. By then the trache tube was out of my throat and the trache wound had healed. I wrote about those first swallows in “On being ready to die, and yet also now being able to swallow slurries—including ice cream:”

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.

Over many months of practice I’ve gotten pretty good at swallowing. Swallowing isn’t like it was before the surgery, but I can taste foods at the back of my throat and, to a lesser extent, in my cheeks. I’m much better at handling acid, salt, and spice than I was when I wrote “On being ready to die.”

One of the scarier moments hit in the first few days after I began swallowing again. I was trying to drink water, and some of it got caught in my airway—I don’t know how, exactly. Bess was home and heard me making some horrible noise like a fish on a boat. She ran over to help but didn’t know what to do, as there wasn’t much to do, and she justifiably feared worsening the choking problem. I think she pounded on my back as I alternated between trying to expel the water and take a breath. I couldn’t get a breath in. I don’t remember which happened first, or how, though I do remember thinking: “I’m about to die by drowning.” And I remember the desperate gasps as I began to get air again. I’d wrongly thought water would be easier than solids, but melted ice cream was, for a while, the only thing that required a mere struggle, as opposed to a titanic struggle.

I’d lost so much taste and texture sensation when I lost my tongue, just as I’d lost much of my life’s animating energy, along with one of my chief means of hanging out with friends and friends-to-be, but enough taste sensation remained for me to enjoy the ice cream. Although that enjoyment was mixed with the terror of drowning.

Part III will continue in a few days. If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care.


[1] Appetite for anything: food, sex, life, status—all the things that make us human and keep us going.

[2] Horrible, but probably better than dying.

Links: Wasting time, counterintuitive claims, technology won’t fix education, population problems, the modern laptop, and more

* “Why do people waste so much time at the office?

* From “The department of unintended consequences:” “It turns out that generous maternity leave and flexible rules on part-time work can make it harder for women to be promoted — or even hired at all.” Basic economics holds that making something more expensive means less of it is consumed.

* Why Technology Will Never Fix Education.”

* “The Invented History of ‘The Factory Model of Education,’” which is news to me and fascinating throughout.

* An obvious point, but, a story about how people can’t be saved from themselves. In this post I wrote, “It is very hard, if not impossible, to fix most broken people.” Penelope Trunk tried, and failed.

* “Ashley Madison: Is infidelity a billion-dollar business?

* Tugg: A Kickstarter-like method for getting Indie movies in theaters. Brilliant.

* “Germany passes Japan to have world’s lowest birth rate;” the real problem in the developed world is underpopulation, not overpopulation.

* Tech billionaires aim for cheaper spaceflight.

* Someone found this blog by searching for “do musicians get laid alot.”

* The creation of the modern laptop:

Pick up your laptop. Actually, scratch that—read this paragraph first, then pick up your laptop. You are holding one of the most advanced machines ever built in the history of humanity. It is the result of trillions of hours of R&D over tens of thousands of years. It contains so many advanced components that there isn’t a single person on the planet who knows how to make the entire thing from scratch. It is perhaps surprising to think of your laptop as the pinnacle of human endeavour, but that doesn’t make it any less true: we are living in the information age, after all, and our tool for working with that information is the computer.

I use an iMac. Point stands, though, and the iMac’s screen is incredible.

* An interview with Tim Parks.

* On food culture, an interview in which Rachel Laudan points out that industrialized agriculture allows us to live the way we live now, and to romanticize inefficient processes.

Links: The end of humanity, food, coffee, nuclear power, fear the police

* “A Primer on the Doomsday Argument;” incidentally I am a long-term pessimist on the ultimate fate of humanity, and today’s utter failure to price carbon emissions appropriately or build better cities does not make me hopeful.

* “Five legal rights women have that men do not,” file under “points rarely made” though points 1 and 2 are dubious.

* The science behind eat food, mostly plants, and not too much; I’d add “avoid simple carbs” as perhaps the most important.

OLYMPUS DIGITAL CAMERA* “Olive oil and salad combined ‘explain’ Med diet success; this is basically every third day’s primary meal in our household.

* The Lost World of the London Coffeehouse. Now people talk to their computers.

* This seems impossible: “Y Combinator And Mithril Invest In Helion, A Nuclear Fusion Startup.”

* “Why I don’t call the police [. . . ] It’s become a given for me that if the criminal justice system gets a hold of a black person, there is a terrible risk that it will try to crush him.”

* “A brash tech entrepreneur thinks he can reinvent higher education by stripping it down to its essence, eliminating lectures and tenure along with football games, ivy-covered buildings, and research libraries. What if he’s right?”

* “How to Talk About Climate Change So People Will Listen,” maybe. My not-original observation is that most people want to know if they will get paid or laid tomorrow, and if their wife’s brother’s husband is making more than they are.

* “My Most Offended Readers Are Ivy-Bound 18-Year-Olds;” my copy of Excellent Sheep arrived yesterday and yes I do love it so far.