Let’s talk about food.
The popular understanding of chemotherapy – or at least the one I held until this past June – was that you puked all the time, lost a lot of weight, and generally existed in a liminal state of nauseated languor for the duration of your treatment. This, I can now report, is not the case.
In my body at least, nausea and appetite ebb and flow in loosely overlapping cycles. I’ve only actually vomited a few times (pro tip: fish and chips are not chemo-friendly) but in the first week after treatment the nausea grips my guts with an iron fist. Everything tastes like metal, or cardboard, and my mouth aches. That week, I eat like a toddler – tiny doses of vanilla yogurt, scrambled eggs, buttered white toast, chicken soup – and try not to throw toddler-sized tantrums when my digestive tract rebels.
But in the second week of a cycle, the nausea loosens its grip somewhat, and I start to appreciate flavor again. I transition to cheese-and-tomato quesadillas and green smoothies, though still nothing even vaguely spicy or dangerously crunchy. ; I develop a sweet tooth and treat myself to small servings of ice cream, vanilla only, or perhaps a soft cookie. At times I push the envelope (see above re: fish and chips). And every time, by the third week, I am ravenous.
In week three I crave big, carby comfort food: pizza, tuna melts, peanut noodles. The other day I was gripped by a longing for Doritos and cottage cheese, a treat from childhood. The same night I dreamt of a preposterously layered chocolate cake, my dream teeth biting through an inch of buttercream to savor the rich, spongy cake below. I long for satiation and, sometimes, I try.
This past week I went to Champaign for a work thing: two nights in the Holiday Inn (glorious) and little control over my diet. But it was the third week of the cycle, I was feeling pretty good and, honestly, I’m just so sick of it all I threw caution to the winds. I ate the portobello burger, the hummus wrap with (ooo) vegetables, the cheesy bread at the bar where I nursed a ginger beer. The morning I left, before hitting the road for what turned out to be a grueling four-and-a-half hour drive home, I stopped for breakfast at a 24-hour-diner. Oh god. Eggs, hash browns, pancakes, even sausage which, for the most part, I’ve been happily off meat – unless it’s chicken soup – but like I said I was LIVING.
It was all so good. I was so very happy sitting there, chatting with the counterman, savoring my eggs, watching the old folks and the students come and go.
The rest of this week I have paid the price with gas, cramps, reflux, diarrhea. Sorry, is this TMI? Welcome to basically the only thing I think about!
God this newsletter is so boring: I’m sorry. Let me bring in a guest speaker far more eloquent than I.
My friend Liz had the misfortune to be hospitalized for five months this year, and for all of that time and then for another three months upon being released finally to her own care at home, she could not eat. She got nutrition intravenously, through a PICC line, a treatment known as total parenteral nutrition, or TPN. For a while, she binged food TV. She rated the different varieties of ice chips available at local medical facilities. She has dreamed about the week-one eggs and toast that I complain about surviving on. She knows from hungry.
Here’s Liz writing in June:
Not eating continues to haunt. I imagine letting a single plain M&M dissolve in my mouth, the color disappearing, the white shell going from crisp to soft, the chocolate melting. I imagine a perfect, not too greasy potato chip, savory and salty. I imagine eating every salad I look at on my phone, imagine the prep and cooking, deciding what I'd take off and what I'd like more of. I'm closer, frustratingly closer, to eating, but not there yet. As if a lover and I were separated for months, but despite living next door to him now I can't see him.
I like that last image a lot – food as a lost love, someone you took for granted, a quotidien fact of life abruptly removed from reach. Would you have appreciated them more if you knew they would suddenly be gone? As a young person I struggled with an eating disorder (I know, boring) and now, as I struggle to get enough calories some weeks I shake my head at the time and energy wasted. I try to be kind to my younger self but I’ve been impatient and judgy lately, as this nonsense drags on, and remember how I once cringed at the prospect of the sort of dense, soul-satisfying meals that, for now, are only ghosts.
Last month, once she was able to eat again, she wrote:
Sometimes I feel like someone who's come back from a desert island who is snatching food into her arms, her dirty face sneering fearfully at the people who brought her back, worried that it will all go away. Other times I feel like a dog who ran away from home but came back, skinny and lost, and is now bolting her food while her owners vainly try to pull her back. .. I've been living in a constant, arrested state of physical hunger for months. My body is very very confused without that sensation and the brute will do anything to protect me from it arriving again, even as I think my body kind of misses it as a baseline, too. Things were simpler, if miserable.
That breakfast in Champaign was my desert island meal – at the time I honestly considered ordering a second platter of pancakes and eggs, feeling objectively quite full but emotionally still starving after the first. I put more energy into managing that state of arrested hunger than I think I can truthfully reckon with. I project into the future and anticipate a similar confusion for myself: what will I do when the baseline shifts? When I have choices, probably too many. Food – and life – is actually pretty simple right now, reminiscent of the early months of the pandemic, when options were limited. What happens next is all so unknown: surgery, adjuvant therapies, radiation? I am exhausted by the grind of chemo, so much so that it has ceased to fascinate, but I confess I am scared of what is still to come.
What do I know is next to come is round #5 tomorrow, the penultimate treatment, and hopefully a smoothie afterward, before the poison fully kicks in and I’m back on my buttered toast again.
Between the trip to Champaign and some freelance work this week I’ve had little time or energy to write. I vowed early on not to be one of those people who apologizes for long Substack silences, and I won’t do it now. But I do have some other thoughts kicking around that perhaps will find full expression soon enough. In the meantime, if you’re in Chicago look for South Side Weekly’s “Best of the South Side 2022,” hitting the streets on Thursday. This is the Weekly’s biggest issue of the year, highlighting a swath of idiosyncratic “bests” from across the sprawling South Side. I love this issue; it is a unique showcase for a truly diverse range of voices, from Weekly regulars to new writers, artists, and community leaders. I’ve been really happy to be able to pitch in as the project editor this year (though whoo I’m also happy it’s almost done). Check it out! And, more from me soon.
I still remember the night I finally felt well enough to eat, a few weeks after chemo and then surgery: I called a friend, and we went to Mon Ami Gabi and shared a steak and sautéed spinach and mashed potatoes and pommes frites, too - and I can still recall it as one of the most heavenly experiences of my life. Suspect your glorious breakfast will likewise be a memory that holds. : )
In the summer of 1971, I went on a four-month fast against the Draft (subsisting mainly on coffee, white cross methedrine, occasional sips of miso soup, nips of Beer Nuts and beer) to take my weight down under their lower military acceptance limit for my height at the time — 131 lbs. for 6’1” — which dropped me from about 165 to 118 pounds. At first, the first month or so, I felt terrible cravings for all sorts of food, and a near-constant, nagging anger at people I would see eating all around me. But I was living in a Macrobiotic household at the time, with a pot of brown rice and miso broth almost always kept warming on the stove, so the transition down to near-zero intake wasn’t too jarring over time, and I actually began to develop a kind of disgust or pity for all the “terrible”, grossly excessive things I was seeing people jamming into their mouths almost everywhere I looked: gooey slabs of pizza, greasy burgers and hot dogs, mountains of ice cream and icy blue frozen pop drinks in cups the seeming size of garbage cans…. I actually became terrified of all that horrible-for-you food I saw in everyone’s hands and mouths all around. An occasional quiet taste of miso at night would be all I might permit myself, mostly to keep my bones from shivering me to death as I lay on my floor mat at night, nothing else burning in the inner furnace at all. Food — took me such a long while to get back to it. Sometimes — obese as I am nowadays — I still feel that way. Maybe time to get back to the miso. Glad for you that you still find great enjoyment in all that mess you’re going through.