Two-time cancer survivor shares the frustrations of struggling with chemo brain. And yes, it's real.
Barbara Tako is a breast cancer survivor (2010), melanoma survivor (2014) and author of Cancer Survivorship Coping Tools–We'll Get You Through This. She is a cancer coping advocate, speaker and published writer for television, radio and other venues across the country. She lives, survives, and thrives in Minnesota with her husband, children and dog. See more at www.cancersurvivorshipcopingtools.com,or www.clutterclearingchoices.com.
When I got breast cancer seven years ago in my mid 40s, the researchers were just deciding that chemo brain was real. Good for them. Sheesh. Do they think we are just making this stuff up? Why? For fun? Wow, I mean think about all the other problems that these harsh chemicals called chemotherapy can cause us medically, but they would think there is no impact on that important organ called our brain? Then there are the steroids to help with side effects, and hormone suppressing medications taken to induce physical states that are not normal. Why wouldn’t all these treatments take their toll on our brains, too?
I have mentioned before that I can’t donate a kidney because of cancer, but hey, maybe the kidney got hurt by one of the cancers or the chemotherapy, but somehow my brain came through just fine? I am doubtful. Don’t get me wrong. Chemotherapy has saved and lengthened many lives, including mine. Chemotherapy is often a good choice in a bad situation—cancer. I am just frustrated because I don’t always feel like I am my old self. Did I make sense? My brain doesn’t feel as competent as it did before cancer. My communication skills are worse. Words come out my mouth that don’t match what is going on in my head. I forget. I am clumsy. I am fatigued.
Maybe some of it is age-related or possibly early-onset dementia or some other physical disease. Still, for me, it seems like the timing suspiciously matches up with the chemotherapy. There is just too much coincidence.
However, I am grateful to be here. I am happy that most of my hair grew back. I try to help others coping with cancer and to enjoy life every day. Personally, I don’t like it when people say “Oh, cancer. You were brave and strong.” Hey, I am still here, but I am not brave and strong. I did what I had to do—we all did. I got through my cancers. I am not a war hero. Cancer is a disease. It is wrong to make cancer glamorous. It just isn’t. Many of us feel like we are damaged goods months or years after cancer. We feel separated from others because of the lifetime fear of recurrence.
There are chemo brain coping tools. I make lists and use my brain the best I can, and I try to work around the chemo brain. Actively practicing gratitude daily and list-making to keep up with life’s many details are a huge help. I pray and go outside and both help remind me that I am not in control. I still work on patience (especially with myself), slowing down, and living in the moment. I use distraction when my thoughts head down a dark path and try to linger there too long. I have learned to rest when I must. I keep my hands busy when I feel anxious. I use all coping tools I know and I stay open to learning new ones. Most days I do well.
Still, I want my old brain back. Survivors have moments where we are tired of coping. The reality is, cancer survivor or not, everyone has stuff that they cope with managing. I am still me. I still feel like me, but it feels like a different me, like Barb Version 2.0. Do you feel that way sometimes? How do you cope with chemo brain?