A friend and colleague is recovering from the lingering effects of “the VID.” When I checked in with him last week, I was glad to learn that he’s feeling better and, especially, that his ability to taste and smell is coming back.
Glad and a wee bit envious. Not that he had gotten sick or that he was feeling better. Let me explain . . .
One day at the beginning of last year, after the second dose of chemotherapy and the first week of daily radiation to my throat and neck, I noticed something wrong with my breakfast bowl. The oatmeal flavor was muted, the seeds were tasteless and super salty, the berries had lost half their sweetness, and the yogurt seemed especially sour.
It didn’t take me long to figure out that nothing had happened to my morning meal. Before starting treatment, I’d been told that chemotherapy could affect the sense of taste.
While I noted the warning, I was more concerned about other side effects. In particular, I worried what weeks of radiation would do to swallowing, eating, and speaking. The oncologist explained what to expect, the swallow and speech therapist had taken baseline measures and prescribed exercises, and the nutritionist walked me through dietary changes. Just in case I lost my ability to talk, I’d also spoken with a friend who teaches sign language.
I thought I was ready.
Nothing prepared me for the shock of that sudden shift in my palate nor the impact it would have. On the spectrum from “eat to live” to “live to eat,” I definitely existed at the latter end. I loved to cook and eat, to turn meals into social occasions, and to explore the cuisines of the places I visited when traveling to teach.
The song’s right: You don’t know what you’ve got until it’s gone.
Most everything tasted like nothing. With only a distant memory of how things had tasted, meals turned into long laments about what I’d lost. It was traumatic. And depressing.
I could smell, which only made it worse because it meant I was hyper-aware of what was missing. I couldn’t help but notice the searing presence of the absence of flavor.
(Thankfully, I could still taste a few things like coffee, chocolate, cucumbers and pickles, and pineapple. Not that this made up for what was gone, but, at least, I had a few bits of yum left to enjoy.)
Six months along, the situation shifted again. Now the majority of salivary glands were offline as a result of radiation. My mouth became progressively drier and thicker; it got harder to swallow. As soon as I started chewing, almost everything turned dry and tasteless, like sawdust or sand in my mouth.
That lasted for six months or so until the next phase began, just as unexpectedly and full-blown as before. This time eating was like a bad acid trip: now I experienced a wide range of weird flavors — flat, metallic, sharp — and awful textures. Everything just tasted wrong.
For the first time, I started to develop an aversion to eating. Even when I was hungry, I no longer wanted to eat.
Between cancer, surgery, treatment, and then this, I’d dropped from nearly 200 to just slightly over 140 pounds, or about 64 kilograms. (Though it makes for a remarkably effective weight loss program, I do not recommend this diet to anyone.)
And my distasteful adventures are not over. My flavor profile changed yet again last month. Some flavors began to come back — like sweet and savory (umami) — albeit incredibly slowly and, what’s worse, unreliably so. Instead of steady improvement, they flicker on and off. That means, unfortunately, I have no idea how things will taste from one day to the next. It’s a warped kind of unpredictable gustatory roulette.
It took some doing, but at each phase along the way, I have managed to find nourishment that is, more or less, palatable. (Thank goodness for Ben & Jerry’s Chocolate Therapy ice cream. It was one of the few things that tasted good at every step along the way. #justsayin’) Though it hasn’t been easy, I am eating healthy meals, exercising, and slowly building back up to my high school weight. The upside is that this summer I am going to look good in swim trunks for the first time in years!
The experts say almost everyone gets their sense of taste — or most of it — back eventually, usually within two years. The treatments ended about fourteen months ago, so I’m hopeful that I will join my friend in being able to enjoy eating again soon.
I made the image from this blog from a photo of a mural in my neighborhood, which was created by Joff Jones in 2017.
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