Distasteful

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.

I wasn’t.

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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Responses

  1. My thoughts: Oh, man! What a trip!!! This is a description of variations on Tantalus myth! I do wish you get it over, Larry! …somehow, to the end of the description, i remembered my children, in early age, after weaning: the process of adding vegetables, one at a time, for a week or so, to the soup… first, just milk, then potatoe, then potatoe and pumpkin, then potatoe, pumpkin and carrot, then potatoe, pumpkin, carrot and onion, …to get them a notion of what taste could food taste; of whatever was added… ( now this is starting to look like a feldenkrais lesson on taste!). Thank you for sharing. All the best, Larry!

    1. Yes, João, the Greek myth of Tantalus is an apt metaphor!

      Thanks for telling me how you introduced your young children to different flavors. I love the idea of a Feldenkrais lesson about taste.

  2. Larry congrats about your studly body and I agree loosing weight this way stinks but what’s exciting is the joy your have when your taste comes back. I look forward about your writings when taste returns.

  3. Your sharing of your lived experiences makes me more aware of some of the hidden trials and tribulations of chemo and radiation. Glad to hear you are on the upward curve for returning taste sensation. Being aware of this will help how I can understand others on the same journey. Thanks for sharing Larry.

  4. I so appreciate your eloquent, description of your journey with taste and food. You help me appreciate something I take for granted and will now feel more aware and thankful for the sense of taste and the eating experience. Thank you for sharing something so personal and profound. Its made my perception richer and filled me with more gratitude. I wish you continued health and taste and looking forward to hearing more from you. Your perspective continues to enrich me and teach me.

    1. Thank you so much, Carole for your kind words and support! I’m glad that sharing my perspective gave you a greater appreciation for something that is so easy to take for granted.

  5. To my husband food tasted metallic for a while. That was the good news. Like you they were many times he couldn’t get himself to eat. Thank you for being so honest about your treatment because one of the things as a survivor of family members treatment not my own is there is way too much Happy talk for my Perspective on life. I would much rather hear reports like yours that are honest but talk about how you’re dealing with it. I found it very hard when people were constantly asking me to be cheerful when it was hard to have a partner going to the treatment. It wasn’t even my own.

    1. Hello Ann –
      Thank you for your support of my frank report about what’s been going and how I’m dealing with it. It wasn’t easy writing about my struggles but I, too, think it’s important.

  6. Thank you, Larry, for sharing such a private, at times scary, and wild journey though losing your sense of taste. Yes, your generosity of spirit in sharing your experiences will help us understand and have more empathy with our students.

    But, I also want to express my deepest appreciation to you for describing your experiences in such a precise and evocative way. They resonate with my own experiences of losing about 60% of my taste for another reason (CIDP)–but, hey, who’s counting? 🙂 Swallowing is an adventure each time. And that’s with Feldenkrais & speech/swallowing therapy!

    Your phrase “It’s a warped kind of unpredictable gustatory roulette” is perfect! I’ve got it on my quotes board,! Yes, for me, too, at the beginning it was this strange seesaw experience of losing my sense of taste while at the same time becoming hyper-sensitive to others. Like salty and sweet.

    As a fellow writer, I applaud you for such evocative descriptions! I recently re-committed myself to writing blog posts from a more personal place. You’ve opened a doorway to how that can be done with deeply personal experiences that can help our students.

    I appreciate your being open about using what the medical field has to offer–chemo, radiation, PT, OT, speech/swallowing therapists, etc–to give you the best possible chance of recovery. And, yes, Feldenkrais has a huge place in the recovery plan. But, when it is a question of life or death, it is a choice we make to use whatever will reliably help.

    I, too, love to cook; and, the social connectedness that happens around a big table where everyone is welcome. I imagine your kitchen simmering with the wonderful tastes & aromas that are coming back to you, as well as your “big table” where the conversations and laughter of your beloveds are a beautiful soundtrack of joy.

    Maggie

    1. Hello Maggie –

      Thank you so much for your encouraging and affirming response to my writing. I especially appreciate that, at least for you, I’m succeeding in making my blog posts evocative and precise.

      You’re right, it is challenging writing about personal experiences. Finding the balance between being transparent and over-sharing isn’t always easy.

      I’m looking forward to cooking for folks . . . once my sense of taste proves reliable again. In the meantime, I keep on finding out what foods make my tongue happy.

      Take good care,
      Larry

  7. Thanks for sharing your journey. I can’t even imagine what it would be like not to be able to taste the food. It is wonderful that you are getting some of these tastes back! Wow.