Chemo Brain: A Survivor's Ongoing Struggle

Breast cancer survivor ponders her chemo brain and her hair loss several years out from chemotherapy.

How much chemo brain do I have? How damaged am I? Some? More than a little? A little? Very little? Or not at all? I don’t want to use chemo brain as a crutch when I mix up words or forget things. My hair was damaged by chemotherapy and mostly returned. It is thinner and grayer now. My brain, well, mostly returned too. I am grateful that chemotherapy is there to treat cancer, but I don’t feel the same since chemotherapy. How about you?

We as cancer survivors are living longer thanks to chemotherapy, other treatments and earlier detection. That is good news, but how do we know what is aging or other diseases and what is damage from chemotherapy? This is frustrating. Does the treatment differ if it is chemo brain rather than some type of dementia or other issue? What treatments are available?

When will doctors test and evaluate the memory, ability to concentrate, multi-tasking and other chemo brain symptoms of cancer patients before and after chemotherapy? If the doctors had before and after records that would be helpful ... right? Could newly diagnosed patients who discover they will have chemotherapy request testing to establish their pre-chemotherapy cognitive baseline?

Please don’t misunderstand me here: I am grateful to be alive. I am grateful chemotherapy was available. I am optimistic about the new treatments coming out almost every day. Without cognitive evaluation before and after chemotherapy, I feel a little like I came out the other side of my cancer diagnosis healed but with collateral damage that there isn’t treatment for — yet.

I try to be an adult. Life in general causes collateral damage: Non-cancer health issues and medical procedures, relationship difficulties and car accidents, to name a few. It is accepted that chemo brain exists, but what can we do to treat its effects?

I feel like chemo brain causes a lot of collateral damage of its own to relationships, employment issues, abilities and mental health. I also believe that we, as humans, are amazingly resilient. Our brains learn to adapt and so do we. With all of that, I would like to know how to help treat my chemo brain.

Should I read more? Write more? Exercise more? Do more puzzles and brain teasers? I also want answers: Will these activities cure my chemo brain? How much will they help? Cancer survivors who have had chemotherapy deserve more answers, I think.Cancercare.org suggests seeing a neuropsychologist for further evaluation. The American Cancer Society offers strategies for day-to-day coping. More research needs to be done. Am I being too impatient?

It's kind of funny that now there is a cold cap to keep my hair if I need chemotherapy down the road. I think that is a good thing. My hair loss really felt like a noticeable and isolating big red flag that didn’t let me have a choice to be “normal” around other people for months.

Hair loss for me was a big issue, though, ironically, I have never really liked my hair. Ultimately, we are just talking about hair here. What about brain damage and brain repair or something preventative, like the cold cap, to protect my brain?

Let’s hang tight to our gray matter and hope medicine catches up to create solutions for chemo brain. I am tired of the fatigue, short attention span and other cognitive issues. I also believe that science will catch up, so I will try to be flexible and hang in there!