The last time I ate real food, actually chewed and swallowed, was six years ago. During those final meals, I ordered a pastrami sandwich, a pork-belly bun, and vegetable soup. The sandwich needed more fat, the bun more seasoning, and the soup I barely touched, because by that point it had become too painful to swallow. More memorable than my soup was the lamb burger served to my wife. It was a thick, luscious disc of meat; she cut it in half to show me the perfect pinkness inside. I made a mental note that I wanted one of those, once I was cured.
With the tip of a spoon I fished a cannellini — my favorite among the beans — out of the tomato broth, chewed until a fine paste was achieved, then swallowed, chasing the bolus like aspirin, with water and a jerk of the head. Everything in the bowl tasted like a blurry version of its vegetal self. A bite of carrot caught in my throat. I reached up reflexively and there it was, cancer at my fingertips, a hard bulge like an Adam’s apple, just left of the original.
The neck is crowded real estate, dense with activity and structures; more systems of the body converge, commingle, here than anywhere else. It is the site of biological and social essentials such as breathing, speaking, and swallowing. The nurses had warned me that radiation to the throat area is the most painful of cancer therapies. It damages soft tissue, causing ulcers to erupt in the mouth. Food tastes strange. Appetite leaves you. Eating becomes hell. Previous patients, the nurses said, had quit treatment midway and taken their cancers home. My symptoms kicked in around the third week.Sores flourished. I lost weight. My throat swelled — evidence, I hoped, that the mass was in its death throes.
A month earlier, my wife and I had been at dim sum with friends when my ENT, Dr. H, phoned with the pathology report. My wife took the call outside, turning her back to the restaurant as if to shield me from the inevitable. I could see her tilt her head into the phone and roll her shoulders inward, shrinking from the news. When my wife returned to the table she stared at the dishes: shumai, har gow, rice-noodle rolls, taro-root cake, jook with pork, and thousand-year-old egg, all getting cold or congealing. I pointed at her plate, urging her to eat the lotus-wrapped sticky rice, our favorite. She shook her head, too upset for food. Then she arched her eyebrows and said, “You eat it.” Which, being a pig, I did.
Eating had been my one enduring talent. More gourmand than gourmet, I loved to chew and swallow. My desire for food had the urgency of lust; I was constantly horny. Breakfast. A second breakfast forty-five minutes later. Lunch. Snacks all afternoon: last night’s meat, cold cuts, a hard-boiled egg. Happy hour with my wife: drinks, chips, cheese, and salami; if she wasn’t home, just drinks and chips. Then dinner, with wine, until it hurt.
When Dr. H discussed my tumor with another oncologist, I overheard him comparing its size to a plum. My first thought: What kind of plum? Italian, Santa Rosa, Greengage? But I didn’t need comparisons to stone fruit to know that cancer was flourishing. Every raspy breath, every hoarse word uttered, told me that it was in there. I was sent to Dr. L, a radiation oncologist who had a reputation for taking on the worst cases, for pushing the limits of what a body could tolerate. At the end of the appointment, Dr. L seemed gleeful; he was “very excited” about my tumor. My disease and I had stumbled beyond Stage 4. We had entered the realm of sport, had become a challenge like Everest.
Three weeks after the vegetable soup, when even scrambled eggs were too much to bear, I told my wife that I was through with eating. She looked at me as if the cancer had spread to my brain. I clarified: I would go on a liquid diet. A friend had given me a smoothie recipe that her mother had sworn by (until breast cancer killed her): yogurt, milk, protein powder, banana, peanut butter, chocolate sauce, flaxseed oil, honey. At first, the intense sweetness and big flavors astonished me. My taste buds were zapped; I had become unused to recognizing what I tasted. But the moment the cool liquid hit my tongue, there was a burst of intelligibility.
For the next two months I drank the same smoothie four times a day. Each feeding was a marathon. The lump in my throat — formerly the mass, now irradiated tissue — made swallowing a struggle. Treatments had ended weeks earlier, but the expected improvement in my physical condition never came. I felt as wretched as during the radiation’s worst days. The swelling was pressed up against my larynx, crimping the airway and paralyzing the vocal cords. I lost the ability to inflate my words to their proper dimensions. My breaths were no longer automatic, they were always on my mind.
I was sent for a barium swallow, an X-ray of the pharynx and esophagus. A nurse served me a thick, chalky suspension of barium, a heavy metal that absorbs X-rays, making visible the passageways through which it travels. After swallowing the barium, I would graduate through a mise en place of green water, applesauce, and cookies, set up on a tray nearby. I shook my head. My wife, standing next to me, knew exactly what I meant: I didn’t stand a chance against those Lorna Doones.
I never even got to the water. The test was called off when the barium, a thin black line on the monitor, veered off course toward my windpipe. My doctor had seen enough — food or drink inhaled into the lungs puts one in danger of myriad complications, including pneumonia. He said, unequivocally, “You’re getting a G-tube.”
I balked. A G-tube was a sick man’s game. Sick like late-stage Parkinson’s. Advanced dementia. Comas.
My doctor explained that the tube would be inserted through my abdomen, to deliver nutrition directly into my stomach. He said, reassuringly, that the tube would be manufactured from state-of-the-art silicone, installed by a state-of-the-art surgeon, at a state-of-the-art facility. But it was still a tube embedded in my gut. What’s more base than sustenance delivered directly to the stomach, like gavage to geese? I babbled to my wife about bodily integrity, how mine was, after these many years, unmarred, unpierced, un-broken-boned. Never mind the human condition. You are a body, first and last.
In reality, though, I was relieved. My weight was down to 112 pounds, and I was sick of smoothies.
Dr. H assured me that the G-tube was temporary, a few months, tops. Once the inflammation in my throat subsided and I passed a barium swallow, he would simply pull it out, no O.R. required; if I wanted, I could do it myself. What about the gaping hole that the disconnected tube would leave behind — the contents of my stomach leaking into my body cavity, septic shock? The doctor strapped on his profession’s you silly patients look, then informed me: “Holes close, that’s what our bodies do.”
Putting a G-tube in, he said, was as easy as taking one out. The first attempt failed. After sedation, prep, and anesthesia, the surgeon called off the procedure. He had seen my large intestine eclipsing my stomach, preventing a direct strike. He decided to wait for the bowel segment to retreat, and in the interim fitted me with a nasogastric (NG) tube, which was threaded up nostril, down throat, into stomach. I left the hospital with the tube bent into a U and taped to my face. It wasn’t until I sat down to feed the tube that I discovered it measured a mere six inches nostril to valve; in order to feed it I had to hold my hands high and off to the side, as if I were playing a flute. The tube wasn’t designed with self-feeding in mind, which made sense, given its target clientele: comatose patients, patients on ventilators, patients with broken faces, premature babies.
Ultimately my wife had to feed me. For hours each day she painstakingly pushed enteral formula, called Jevity (as in “longevity”), through the tube as thin as uncooked spaghetti. The Jevity had the viscosity of heavy cream, further slowing the process. Each feeding lasted an episode and a half of Downton Abbey. I emailed my son a photo of my wife and me, my way of letting him know of my new acquisition. We’re smiling, a knit cap low on my brow, the NG tube curved across my cheek, the residual formula inside bright as neon, the purple valve taped exactly where an earring would dangle. The subject line: “Post-feeding bliss.”
On the second try, the G-tube was properly installed. I fed it every four hours, a total of four times a day, with formula — think baby formula — and an equal volume of water. After trial and error with brands and caloric distributions, I settled on Fibersource HN, 300 calories and 13.5 grams of protein, a product of Nestlé, the same company that gives the world Gerber baby food, Häagen-Dazs, Kit Kat bars, and Purina Dog Chow. On the package, offset within an attention-grabbing oval graphic, was the word unflavored, which made me wonder: Are there flavored enteral feeding formulas? Other than on our tongues, we have taste receptors in the palate, larynx, and upper esophagus — but in our stomachs?
G-tube meals meant no muss, no fuss. No food prep. No risk of aspirating or choking. No smoothie stare-downs. No marital discord over what or how much was consumed. One feeding to the next, it was the same comforting routine: fill beaker with water; spread towel on lap; crush pills, add water, stir; shake and unseal two containers of Fibersource; pour formula into a second, empty beaker; clamp G-tube to prevent stomach contents from escaping when opening valve; open valve; unwrap fresh syringe, dip nozzle in formula, withdraw sixty centiliters; insert nozzle securely into valve; gently push plunger. The syringe empties slowly, and the formula gently pools in your stomach. If you “plunge” harder, the formula surges, the jet pelts your pink insides, and you feel the stomach lining flinch. That’s all the sensation there is. Pleasure, satisfaction, beauty never crossed my mind.
I devoted myself to the G-tube. Feedings were inviolable. The dietician prescribed eight eight-ounce containers daily. Eight is an auspicious number in Chinese culture.
After ten weeks of daily infusions at 2,400 calories and 108 grams of protein, I cracked 120 pounds. At the rate of two pounds per week I could hit my target, 150, in four and a half months.
From my journal, March 29, 2012: “Woke, fed tube, went to acupuncture, came home, fed tube, napped, fed tube, emailed, fed tube.” In the locution of the cancer ward: Your only job is to get better.
I am astonished, now, at how many of my first memories of places are related to food: goose in Hong Kong, lardo in Florence, cherrystones in Boston, pizza in New York. And milestones, too: my fortieth at ABC Seafood, my son’s graduation at Lupa, my mother-in-law’s seventieth at Providence, my daughter’s haircut party at Hop Li. I fondly remember the ham-and-Swiss sandwich at Bay Cities, the crispy-skin cubes of pork belly at Empress Pavilion, the roast-duck noodles at Big Wing Wong, the grilled prime rib at Campanile, those perfect bites of charred, almond-and-olive-wood smoky, tapenade-smeared meat dabbed in flageolet beans and braised bitter greens.
With the G-tube, I did not eat — I fed the tube. My mind did not equate the formula with food, as other patients do — how could I confuse the two? Goose in Hong Kong is a meal, not a feeding; the table is laid with utensils, not a syringe; one dines, not feeds.
I’d been feeding the tube for three months when a PET scan showed, in the words of Dr. L, “hypermetabolic activity that is asymmetric.” That meant trouble. A PET scan measures bodily functions, such as glucose metabolism, using a radioactive tracer; cancer cells, which require lots of sugar, light up the scan. That night, feeding the tube seemed futile. Why bother if all that five hundred containers of formula yielded was more disease?
I was referred to another ENT, who strode into the examination room and, without introduction, threaded a light and camera up one nostril and down my throat. On the color monitor my throat showed up gray instead of carnation pink.
In the world of abnormal healing, he said, my case was abnormal. He doubted my ability to heal.
I can’t say if he was seated or standing, I just remember him towering over me, and me wondering why he wouldn’t stop talking.
The day would come, he went on, when I would have to choose between speaking and swallowing. He didn’t elaborate and I didn’t ask. I just wanted to leave before he said any more.
Later, I turned to my wife for answers. Since when were talking and swallowing optional? And how did one go about choosing? A pros-and-cons list?
In the end, a surgeon made the choice for me. Radiation and chemo had failed me, the cancer was back, and the only option left was a total laryngectomy, in which the entire larynx is removed and the airway is separated from the mouth, nose, and esophagus. In the operating room, the surgeon reattached mouth to esophagus rather than mouth to trachea and reconstructed the upper esophagus as a funnel of flesh with skin from my thigh.
If it had been up to me, I would have chosen the same. Swallowing, every time. I imagined the first thing I would eat — hot ramen noodles searing my throat on their way down.
From an early age I had learned the price of things, a consequence of growing up in an immigrant household. “How much-a cent?” was one of my mother’s signature English phrases. She wanted to know the cost of things to take your measure: Had you been duped? How big a fool were you? Her brain worked like The Price Is Right, all goods were pegged to a number, and if your purchase went over, she would click her tongue; if it was under, she would say, “Waaaa!” and you would feel golden. Of the oncological deal she would have said, “Waaaa!” Anything in exchange for the rest of your life is a good value.
You take that deal every time.
The cost has been steep, though. I breathe through a hole in my neck; my nose and mouth serve no respiratory function; I can’t talk; I can’t whistle, moan, sigh; I can’t scream (once, while cooking for my wife and daughter, I cut myself badly and jumped away from the cutting board shaking my hand, silently spraying blood); I can’t smell anything, not bacon, not diesel fumes, nothing; mine is a vestigial nose, on my face solely for looks. And I can’t eat, either.
Now that I’m at some remove from the surgery, I wouldn’t mind being replumbed, having my windpipe hooked up to my mouth. At least then I could sing again, blow out candles, laugh at my daughter’s jokes. This eating thing has been a bust. I’m a hundred percent Fibersource via the G-tube. When someone texts me a photo of their lunch, if I happen to be feeding the tube and feeling bitter, I text back a photo of a beaker of ecru formula with the empty container posed close by: “Here’s mine.”
Do you miss it?” my wife asked me recently. She meant eating at restaurants, dinner parties with friends. She had just polished off take-out sushi from a new restaurant that we would have already visited, back in my eater days. Her post-meal rundown was enthusiastic at first — the rice was the perfect temperature, as if the chef had factored in the time it took her to transport the food home. But then she seemed to lose heart and the review sputtered, her voice taking on an apologetic tone.
Four years ago, after living crisis to crisis for so long after the surgery, it finally seemed safe to exhale and dig out of the chaos. It was time to reclaim a measure of normalcy. I was going to surprise my wife with a dinner out with our daughter. We were celebrating our wedding anniversary, after letting the past few slip by virtually without notice. I made a reservation at Connie and Ted’s, a New England seafood shack in West Hollywood. The menu was right up my culinary alley — raw bar, steamers, chowder — but I would go as a bystander.
It hadn’t occurred to me that people would stare until I walked into the restaurant. I hadn’t been out in public except for doctor’s appointments and walks in the neighborhood. While I was getting dressed, my wife had asked if I planned to wear a scarf to hide the tracheostomy tube that poked from my throat. As we were seated, I wondered if she had asked for my comfort or hers.
At the table, though, we were back to the old normal, studying the menu in forensic detail. “They have Fanny Bays,” my wife said, reading off the oyster list. “And Malpeques. Or is it Malaspinas that you like?” Our dinner out came crashing down around me. What did it matter which bivalve I preferred? I was here only to window-shop.
My wife was undeterred. She ordered enough food for three adult eaters. Nothing says festive like a crowded table, and she was determined that I not withdraw to the fringes of the party. She would eat the oysters, and I would sip the liquor from the shells. For my entrée she ordered Rhode Island clam chowder. It was undeniably briny and clammy, easily the most delicious thing I’d tasted since I stopped eating. But I didn’t take a second spoonful. We were out in public now. I couldn’t take in liquid without dribbling on my shirt. I wouldn’t embarrass us here.
My wife couldn’t maintain her good cheer. By the time the entrées arrived, she was overwhelmed by the accumulation of food — lobster roll for her, squid for the kid — joining the we’re still working dishes that remained on the table.
In the photos of that night my daughter looks wretched. She was nine, and had entered the stage in which smiles for the camera are self-conscious, betraying little of what is going on inside. Even with a just-delivered plate of fried clams and french fries in front of her, her eyes mirrored how the rest of the table felt: We wished we were far away.
We faked it, played at dining out. We pretended that cancer was behind us, throwing a scarf over it. Whenever we remember that dinner, my wife says, “Never again,” and I flash the thumbs-up: I’ll drink to that.
People dine. We eat consciously, looking, tasting, smelling, gauging texture and temperature. We share. We talk. My wife and I seemed to talk differently when there was food between us. We loved restaurants, loved to go out and indulge in the rituals of a shared meal: settling in at our table, scanning the room, dissecting the menu, faking our knowledge of wine. After our orders arrived, we dug in, tasted each other’s dishes, critiqued the kitchen’s hits and misses. For hours we sipped and chewed.
Do I miss it?
I can tell you that eating nice food and drinking good wine with my wife was the best thing ever. In my memories of dinner together we are enveloped in gilded light that seems to emanate from the table’s 720 square inches and the plates of food and glasses of red wine between us. “Communion,” “spiritual,” “intimacy,” come to mind as words to describe these moments.
I can also tell you that chewing was glorious. Swallowing was king. I can remember specific dishes and name the ingredients, but I can no longer tell you what it felt like with a platter of Dungeness crab on the table, what the sight of the orange carapace, the aroma of garlic, ginger, scallion, aroused in me. I can’t relate to the old, eater version of me. I don’t remember how it feels to be in the presence of food and crave it, want to own it, or how it feels to know its pleasure and anticipate having that pleasure again. I can’t relate to that kind of beauty anymore.
I am told that cancer has not changed the essential me. “You’re still David,” my wife says, tactfully omitting the rest of the sentence: despite physical damage and eroded quality of life. As much as I love her for saying that she sees me past the wreckage, I think she’s lying, at least a little, because from in here things have changed. Five years without a morsel of food passing between my lips has made me a stranger. Seeing food now doesn’t make me hungry; neither does reading about it or thinking about it. Drop a steak in front of me and what am I going to do? Will my mouth water or my blood pressure rise, my pleasure centers spark in my brain? None of this happens, because it can’t. A plate of rib eye might as well be behind the glass of a Hall of Mammals diorama.
At home, in my kitchen, I watch the dog eat. She puts her head down and doesn’t come up for air until she’s emptied the bowl. All day she wants food, and as soon as food arrives, it’s gone. She has all that mouth, all those teeth, all that jaw, and she doesn’t chew, just mindlessly inhales the premium kibble. It’s textbook carnivore behavior, I know, brutal at its core, tear and swallow, take in the largest hunks that won’t choke you. All the dog does is ingest a substance for the sole purpose of loading up the gastrointestinal tract: the same joyless thing that I do. Breathe, I would tell her, if I could. Sniff. Relish the chicken-and-liver recipe. Chew.