Chemo Brain

Rick Monteith

One weekend about nine-and-a-half years ago, I flew from Minneapolis, where I live, to Atlanta for a publishing conference. A colleague and I were to make a presentation to the vice-president of one of our major customers.

For a couple of weeks I’d been plagued by a sore throat, but I’d written it off as allergies or a virus. When I tried to begin the presentation, though, all that came out was a squeak. The VP was very sympathetic, and fortunately my colleague was able to handle the meeting.

I flew home that afternoon. The next morning, I saw my primary-care physician, who referred me to a radiologist for a CT scan that very day.

After the scan was completed, the radiologist said that he was referring me to an ear, nose and throat doctor for an appointment the next morning.

“You’ll like her,” he added, handing me my films, “She’s young, and a very good ENT specialist.” He paused briefly. “And a great oncologist.”

With that, I had a pretty good idea what was in front of me.

After examining my nose and throat with a scope, the ENT specialist told me that she’d spotted a tumor on my right vocal cord. It was affecting the lymph nodes in the right side of my neck, and we had to begin treatment almost immediately.

Although I’d been a chain smoker in my early twenties, she assured me that this probably hadn’t caused the tumor. “They’ll know how to cure cancer long before they can pin down specific causes for this kind of growth,” she said.

The next morning she met with my wife and me, laid out my options and recommended a course of treatment. Afterwards, I sat down individually with my two adult sons and thirteen-year-old daughter and told them what was happening.

“I’m sure I’ll be fine,” I assured them, “but I promise I’ll be totally honest with you about how things are going.”

I spent seven weeks in chemo and radiation, doing my best to handle it matter-of-factly. During this time, two close friends succumbed to cancer; to cope with this loss, and the rigors of treatment, I drew on an inner reserve of stoic determination. One nurse called me “a tough old bird,” and though at fifty-seven I didn’t consider myself old, I smiled and went along with it.

Luckily, my voice stayed more or less intact, and in the weeks following the treatment I regained my ability to taste food and was able to start rebuilding my strength.

But I found myself wrestling with two aspects of the treatment and recovery that my doctors hadn’t mentioned: the mental and emotional repercussions commonly referred to as “chemo brain.”

Even after the treatment’s end, when the worst of the chemo-induced brain fog had lifted, I didn’t regain any real mental clarity for months. I walked around in a mild daze, depressed and barely functioning, feeling as if I’d gone without sleep for weeks on end. I couldn’t recall the simplest things, couldn’t find words I’d always retrieved instantly–authors’ names, book titles and so on. At times, I feared that I might have early-onset Alzheimer’s.

Then there was the emotional side of things.

When the treatment was over, I was thrilled to be done with it. I just wanted to move on. I didn’t give a thought to any kind of counseling; I didn’t want the cancer to define my life.

“I’ll be fine,” I told myself, as I’d told my children.

And I did feel fine–at first.

Over time, though, I began to experience intense emotions in subtle and not-so-subtle ways. I suppose I may have been suffering from a form of post-traumatic stress disorder. Like the grief I’d experienced after my brother and his wife died in an accident, these painful feelings would come out of the blue. I teared up at the slightest provocation–a song on the radio, a memory, even a flavor I’d feared I’d never taste again.

Finally, about three months out, I felt the full impact of everything I’d been through.

I’ve been a lifelong college-hockey fan, particularly of the University of North Dakota team, and my son and I always make a point of seeing at least one game during their conference tournament. Usually we buy tickets on the street. This time, he called a few days beforehand and surprised me with tickets for the whole tournament.

“I’ll meet you there for the first game,” he said. “You can buy the beer.”

Arriving early, I stood on the sidewalk outside the arena and basked in the atmosphere. It was a brilliant, beautiful March day; fans from every conference team were there, whether their team was playing or not. The sidewalk was crowded and noisy; people milled about in small groups of like-colored jerseys. The excitement was tangible.

Nearby, I spotted the Michigan Tech Pep Band, always a tournament fixture, even though their team routinely finishes near the bottom. A small, rowdy group dressed in wild clothing and bizarre hats, they’re crowd favorites, brightening every game with their antics.

As I watched, they fired up and began marching through the crowd.

Then all at once it hit me. This tournament was a thread that had run through my entire adult life; it was something my family had lived for every spring.

On so many levels, I realized, I was lucky to be there. I still had my voice. And, though grieving the loss of my two friends, I was alive.

In that moment, I was overcome by joy and gratitude.

I broke down and sobbed–cried like a baby in the middle of this huge crowd. If you had been among the hundreds of fans, you might have noticed a lone, middle-aged man, glasses in one hand, trying in vain to dry his eyes on his sweatshirt sleeve. A total breakdown.

I’m sure my “event” lasted only a few moments, but it took me several minutes to collect myself. I’m surprised they didn’t haul me away.

About the author:

Rick Monteith has been in the book distribution/publishing industry for more than thirty-five years. “I started writing in my mid-teens and wrote this piece as part of a blog I created to pass stories along to my children.” You can visit that blog at suburbandullard.blogspot.com.

Story editor:

Diane Guernsey

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Comments

10 thoughts on “Chemo Brain”

  1. Hi Rick,

    First off, I came across your site and wanted to say thanks for providing a great cancer resource to the community.

    I thought you might find this useful infographic interesting, as it shows the detailed effects of chemotherapy in an interactive format: http://www.healthline.com/health/cancer/effects-on-body

    Naturally, I’d be delighted if you share this embeddable graphic on http://pulsevoices.org/index.php/archive/stories/756-chemo-brain , and/or share it on social. Either way, keep up the great work Rick!

    All the best,
    Maegan

    Maegan Jones | Content Coordinator
    Healthline
    Your most trusted ally in pursuit of health and well-being

  2. Warren Holleman

    Rick- Thanks so much for sharing–I hope it was as therapeutic for you to write as it was for us to read! I found your memoir to be very instructive for those of us trying to understand what chemo brain is like. As for “grief brain,” I’m with Ronna–your symptoms sounded exactly like mine. At times I would be embarrassed and then at other times I would tell myself this was a healthy grief response. But I still wondered if everybody around me thought I was losing it. And then I’d be embarrassed all over again b/c it looked like I was trying to draw attention to myself!

    1. Rick Monteith

      Warren,
      Exactly.. I’ve been through both the grief and chemo brain moments, and you’re right.. very similar.
      Best to you,
      Rick

  3. Ronna L. Edelstein

    Rick, I am glad that you have survived and thrived. I, thankfully, have not experienced chemo brain, but I do live with grief brain. I can be engaged in an activity or strolling through the park when I suddenly break down and remember that my dad is gone. Things that happen to us tend to be finite, but our responses to them–and feelings about them–are infinite. I tell myself–and you–that it is okay to feel and cry…and then to move forward.

    Ronna L. Edelstein

  4. Ron Banner MD

    Thank you, Rick, for sharing your story, the frustrating effects of chemo brain on your life, and then your epiphany experiencing the joy and gratitude for still being alive.

    I wonder if your epiphany altered your PTSD?

    1. Rick Monteith

      Ron,
      I think if anything that moment was a big marker on the road out of it. I have often referred to it as my “holy sh*t” moment – when I first fully realized what I’d just been through and how profound it really was. Up to then, I’d been largely focused on the bit-by-bit recovery.

  5. Your reaction mirrors mine–precisely. I didn’t understand the PTSD when it happened to me a few years after my 2004 DX of Stage IIIA breast cancer. Now, I had a bone metastasis last October, and I’m still learning how to deal with the reality of STAGE IV.

    1. Rick Monteith

      Elizabeth,
      Best of luck to you – it’s a journey. I hope you have a good support system around you to help you on your way..
      Best,
      Rick

    1. Rick Monteith

      RC,
      This may sound a bit odd, but I’ve thought many times about what a wonderful learning experience the whole thing was. I met so many great caregivers and witnessed such courage. I truly learned that you never fully understand how strong you are until you have to be.

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