Chemo Side Effects They Don’t Always Tell You About

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When starting chemotherapy, I was expecting hair and weight loss, but was caught off guard when my mouth began to hurt.

cartoon drawing with blogger and NHL survivor, John Smelcer

During the TEACH session with a nurse before I began treatment, she gave me a list of all the usual side effects of chemo — things you expected like hair loss and weight loss — but there were some side effects she never mentioned, some that were worse than others. I learned about them the hard way.

My oncologist told me that chemotherapy kills fast-growing cells in your body. He said that although my cancer—made of fast-growing cells—was the ultimate target, that other things would be harmed along the way. Before my diagnosis, I knew that our body sloughs off dead cells all the time. Old skin cells are constantly replaced with new ones. Because of that, cancer patients often have skin issues. Dermatological lotions are recommended. I also knew that our mouths and tongues are constantly turning over new cells, especially tongues. What happened to me doesn’t happen to every cancer patient, but some might experience it.

I hope you don’t.

Thanksgiving came right after my second or third cycle of week-long hospitalizations for chemotherapy treatment. The chemicals were starting to take their negative toll on my body. On the two-day drive to spend Thanksgiving with my wife’s parents, my tongue started hurting. At first, the sensation was mild. By the next morning, it hurt to move my mouth, especially to speak or eat. I spent the day sitting in the car silently so as to avoid the pain. My wife would tell you it was the first time she ever knew me not to prattle. I imagine she enjoyed the quiet drive.

By the time we arrived at her folk’s house in East Tennessee, the pain in my mouth and tongue was excruciating. I couldn’t eat or talk at all. My wife called my doctor’s office back home and told them what was happening. With some difficulty, they managed to send a prescription to a nearby pharmacy. The prescription was for “Mary’s Magic Mouthwash” (similar products are sold by other brands with names that include “Miracle” or “Magic” mouthwash).

What I learned was that the chemo had done its job all too well. Along with killing my cancer (non-Hodgkin’s lymphoma), it was killing all the cells in my mouth. Radiation therapy can do the same thing. Instead of old cells dying and being replaced, no new cells were forming. The inside of my mouth and my tongue were white. As best I can describe it, my tongue felt like a crinkly, brown paper bag. Even the slightest movement was an experience in pain. I constantly wondered how something so small could create so much pain.

Luckily, Mary’s Magic Mouthwash did the trick. Its symptoms-easing formula includes nystatin, hydrocortisone and diphenhydramine HLC. The directions were simple: swish it around in your mouth then spit it out. Repeat several times a day. The topical concoction dulled the pain enough to eat and speak (to my wife’s chagrin). It didn’t reverse the damage. That only happens days and days later when the effects of the chemo wear off and new cells are permitted to grow. But the gargling helped significantly. Truly, it was “magical.” My mouth and tongue died every single time after subsequent chemo cycles (four more of them). But by then, I knew enough to have a full bottle ready to go.

Throughout my six-month cancer experience, I wrote poems. I wrote every day. The poems came out of me faster than anything I ever experienced. They were funny and satirical, sad and uplifting, cringe-worthy at times, but always genuine. The poems were eventually collected into a book. Running from the Reaper: Poems from an Impatient Cancer Survivor is now available worldwide. It’s a useful resource for anyone diagnosed with cancer, who survived cancer, who cares for someone with cancer, or who loves someone with cancer. Naturally, I wrote a poem about what happened to my mouth.

 

CHEMO CYCLE BLUES, PART II

 

Doctors said they wanted to up the dose of my chemo.

“We must try to kill you to save you,” they reminded me.

 

The stronger dose shut down my immune system

so that I was ogled by every passing germ, bacteria, or virus,

the way prostitute’s beckon solicitously to sailors

passing a brothel.

 

All the fast-growing cells in my mouth died.

My tongue was white and blistered.

For days, eating anything was torture.

The pain shot up my ears whenever I chewed,

so I drank those crappy booster drinks instead.

 

Did I tell you this was all during Thanksgiving?

 

So much delicious food

that hurt me too much to eat a bite of it,

except for a slice of homemade pumpkin pie

with whipped cream.

 

(Some things are worth the pain.)

 

The poem doesn’t quite capture the pain, which was excruciating—worse than anything I’ve ever experienced (and I’ve been mauled by a bear in Alaska, which I write about in one of the other poems in the book). My tortured mouth and tongue weren’t the only unexpected, nasty little surprises that I experienced during my cancer journey. There were others, some you may have heard of, some you may not. In upcoming blogs, I’m going to tell you about some of the other side effects they don’t always tell you about.

 
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