Invisible Illness Week, Sept. 28-Oct. 4, aims to encourage those with an “invisible” chronic illness to raise their voices and be heard. One of the most devastating effects of breast cancer treatment is completely unapparent – except to the survivor herself, who’s lost something she never expected, and desperately misses: her mind.
Chemotherapy, the drug treatment tens of thousands of breast cancer patients undergo every year to kill their cancer, is a long, tough haul.
Mouth sores. Bleeding. Vomiting. Fatigue. A bald head, leg pain, and sore, itchy eyes. These are only some of the immediate side effects of the various drug “cocktails” a survivor might take; the longer-term fallout is more subtle, but potentially even more devastating.
Prime example: chemo brain.
The hallmarks of this condition, which affects up to 25 percent of all women receiving chemotherapy for breast cancer, include cognitive impairment and loss of short-term memory. That’s what the doctors say.
But I experienced it, and “impairment” doesn’t begin to describe the many small ways chemo brain can turn the simplest everyday task into a daunting mental challenge. Here’s how I described it four years after I went through chemo, as I was just starting to come out of the fog:
“If your mind is a blackboard, chemo brain is the eraser. I couldn’t remember my phone number, my mother’s name, the street I lived on… not always, but frequently enough to be scary. I didn’t know which way to turn a water tap, to make it work; my vocabulary evaporated like a summer shower on hot pavement. Heck, when I forgot my phone number I couldn’t even look it up in the phone book, because I couldn’t figure out what order the letters of the alphabet went in – THAT’S chemo brain.”
It’s not just "in your head"
Researchers are still getting a handle on chemo brain. Fifteen years ago, women suffering from it were told, “It’s all in your head. You’ve been stressed. You’ll get over it.” And many women did, gradually getting back some, if not all of their previous mental acuity.
But continuing research has shown that chemo brain isn’t just an emotional reaction to stress; it’s the result of drug-induced central nervous system toxicity, accompanied by the destruction of brain cells. Most women recover once treatment ends, but it’s estimated 45 percent continue to feel the after-effects months and even years later.
I’m one of those women.
I work in a deadline-driven, high-pressure job, surrounded by age 20-something high achievers. The pace is go-go-go… and oftentimes, I’m hard-pressed to keep up. Not because I lack the will to work hard, nor the energy. But simply because I’ve lost the language, as well as my “forward memory” – the ability to think what I want to say, and then say it.
In the midst of a meeting, I’ll start to give input about an upcoming project – only to suddenly stop dead, stuck on a common word like “essential.” Or, even worse, I get two sentences in and find I’ve lost the mental path; I have no idea where I was going, and what to say next.
Many of my friends, suffering the same type of forgetfulness, tell me not to worry; “We’re all getting older,” they say. “Everyone forgets stuff.”
But I know it’s more than that. I used to be smart. Now, struggling to keep up, I have to admit my brain isn’t what it used to be. The complex thought processes layered atop one another as I multi-tasked – gone. The ability to see a broad picture and details concurrently – poof!
My co-workers are kind. But I see them slowing down for my sake. I know they have to repeat themselves, and remind me about projects coming due, things I used to easily carry in my head. And it shames me, this mental loss. “A mind is a terrible thing to lose” – especially when you’re fully aware you’ve lost it.
But what can you do? If breast cancer teaches us one thing, it’s to stay strong and keep moving. A daily to-do list – numbered, and crafted in excruciating detail – helps keep me on track. And I continue to carry a full work load – both because I have to (college bills!), and I want to. I happen to love my work.
As so many out there with chronic, hidden health conditions can attest, just because you can’t see it, doesn’t mean it doesn’t exist.
Chemo brain is my invisible illness.
See more helpful articles:
Burmeier, Beverly. “Chemo Brain - CancerConnect News.” CancerConnect News. April 2, 2009. Accessed September 19, 2015.
Breast cancer survivor and award-winning author PJ Hamel_, a long-time contributor to the HealthCentral community, counsels women with breast cancer through the volunteer program at her local hospital. She founded and manages a large and active online survivor support network. _
PJ Hamel is senior digital content editor and food writer at King Arthur Flour, and a James Beard award-winning author. A 16-year breast cancer survivor, her passion is helping women through this devastating disease. She manages a large and active online survivor support network based at her local hospital and shares her wisdom and experience with the greater community via HealthCentral.com.