I was prepared for the nausea, the exhaustion, and the hair loss. I was not prepared for The Taste.
After a recent chemotherapy infusion, I tried to describe the sensation in my mouth and how it affects my appetite. “Imagine putting mustard on everything you eat,” I said to my husband. “Even ice cream.”
Except The Taste is not like mustard. It’s like cotton balls that have been soaked in aluminum and old orange juice. It’s like not brushing your teeth for five days, popping an unwashed retainer in your mouth, and then rubbing a stale cracker over your gums. It’s like licking an old sponge covered in paperclips. It’s the taste of something gone horribly wrong.
Several years ago, when my father was dying, his body took on a smell that I could only describe to close friends as corpse-y. He seemed caught between two worlds, the world of bagels and traffic, and the world of after. I sometimes cleaned his gums with a Q-tip dipped in mouthwash.
Now, in the middle of the night as I gargle with baking soda and salt to help avoid mouth sores, and then with Listerine to try and escape The Taste, I think about my dad’s breath in those last few weeks. And then I think about my own body and how quickly it has changed. My breast tissue has been replaced by expanders, which are holding the place for future implants. In my armpit is a scar from the removal of several lymph nodes. I have a port in my chest that looks like a rogue Adam’s Apple. Except for my eyebrows, my hair is gone. And my mouth tastes like the lid to the compost bin.
I am trying to maintain a sense of curiosity about these changes, focusing on what my body can do as opposed to what it looks like. When not curled up in a fetal position with nausea, I can still walk, stretch, swim, and dance. Apart from my breasts, everything else is temporary. These scars will heal, the port will come out, my hair will return, and The Taste will fade away.
While my mouth tastes like copper and old yogurt, it is difficult to enjoy food. Last night I topped my turkey chili with extra jalapeños. My mouth was on fire but I felt elated to be experiencing a different sensation. Then later, while I was watching Grey’s Anatomy and sipping ginger tea, The Taste returned with a vengeance. “You thought you could burn me away,” it snickered. “Nice try.”
Chemotherapy is the use of chemicals to treat cancer, and The Taste is the byproduct of the unavoidable damage to the cells in my mouth. “But I don’t have mouth cancer,” I want to say to the toxins traveling around my body. “Stay below the neck.” But chemo is a social butterfly who wants to meet everyone at the party. So here I am, chewing peppermint gum while halfheartedly baking a chicken, marveling that one day I will struggle to remember this.
Humour in adversity like this, as you know, is a massive strength – and I can only marvel at your strength and creativity to turn what you’re going through into a funny and engaging piece of writing. Wishing you much koyach. Ben xxxxooooxxxx etc
Rebecca I am so sorry to hear that you’ve been going through this. You are brave and strong and I am thinking about you. xo
Reading your brilliant words I could totally get the sense that no matter how you try to describe the taste no matter how many analogies are used we will never know until we experience it for ourselves. Thank you for sharing your experiences in true Rebecca fashion with intelligence and witt. So sorry you have to walk down this weird road. I have no doubt your amazing family are bringing you great strength comfort and humour. Lots of love .
I love the way you stare down this experience and challenge it with humor. I must admit that those descriptions left me nauseous but perhaps that was supposed to happen, it made me more intimate with your journey. Sending big love your way.
Your writing is such a gift in helping everyone else to understand what happens to you and so many others that we all care about but have not had the understanding we need to express our concern adequately. I hope it’s helps you to do the writing also. Love and hugs , you’re always beautiful !
Rebecca- I hear and feel and taste your journey. I will also celebrate with you your healing and return to health. My love to you, Dave and the girls. I send you healing prayers and think of you often. If I lived closer I would visit and make you chicken soup and spend evenings holding your hands, stitching and laughing with you.
Many, many and probably most people who receive chemotherapy experience what you so eloquently describe. Please consider seeing a nutritionist and making protein frappes to maintain good nutrition during this rugged, rugged time. I’ve only been treated with chemo a tiny bit for autoimmune issues, but as a COVID encephalopathy survivor, I know what it is like to experience loss of smell and taste followed by abnormal smell and taste. Hang in there. This will eventually, thankfully, blessedly pass. Tell us how we can help.
Rebecca. You write so beautifully about a very challenging time for you.
A close friend of mine described her chemo experience as tasting like old coins.
Miss you and miss you in the band, too. x
yes. old coins. Miss you too Jeanne xo