The struggle of Chemobrain is REAL.

This October, the Breast Cancer Resource Center has once again paired up with KEYE-TV for Breast Cancer Awareness Month. Our aim is to shine light on some of the marginalized aspects of breast cancer – be it the struggles of life after treatment, what it means to live with Stage IV breast cancer, and the new frontier of breast cancer research and treatment options. Our stories will be released via our blog every Tuesday and Thursday in October, and will air subsequently on KEYE-TV at 6am and 6:15pm on Tuesdays, and on their partner station, Telemundo, at 5pm on Thursdays. Help us educate this month by sharing our stories with your friends and family. If one of our stories made an impact on you or someone you know, we want to know! Contact us at mail@bcrc.org!


 

By: Maria Mabra, BCRC client

Maria as an Art Bra Model, Art Bra Austin 2014

Chemo Brain is like being trapped in a glass box with people standing right in front of you – you’re pounding on the glass but they can’t see you, they can’t hear you. You’re trapped, your brain is trapped. I didn’t end up in the box immediately and it didn’t happen all at once. Although I felt foggy after my first chemo session, I didn’t really think anything of it. After my second treatment, I realized I was struggling to find a word here and there but I thought, “I’m tired, I’m just tired.”

I continued to tell myself that until the day I sat down at my computer to send an email and I couldn’t remember how to spell. And it wasn’t a long, difficult word I couldn’t spell. It was “cat”. I couldn’t remember how to spell a word they teach to kindergarteners. My boyfriend was so kind. He helped me with the spelling and didn’t make a big deal about it. Imagine how I felt the morning I woke up and didn’t know his name. Don’t get me wrong, I knew who he was, it isn’t like Alzheimer’s, but when I tried to say his name… nothing… blank slate. I couldn’t come up with the name of this person I’ve lived with for six years, this person I see every day, this person I love so much.

Then I lost colors, which is a pretty big deal because I own and operate a landscaping company. My clients depend on me to create eye-catching, colorful designs. They expect me to be able to describe what I’m thinking, and why I’m recommending specific plants. I remember standing in front of a client trying to explain a design and I couldn’t describe blue. It was more than the word, it was the whole concept of blue and how it related to other colors in the design. It was paralyzing.

Chemo Brain is so much more than “forgetfulness.” It’s really hard to compare it to anything. People try. They say, “Oh, I forget my kids’ names all the time.” But it isn’t like that at all. I couldn’t communicate. The words and ideas that used to be there were just gone, and I had no idea how to get them back.

Soon I started faking it. In casual conversation, I did a lot of nodding, repeated what other people said to me, and asked a lot of questions. Eventually, even that became too difficult and I just stopped talking to other people altogether. Even the transactions that happen at places like the grocery store. The most I could get out was “Thank you” as I handed them the money. Ultimately, I stopped going places and I stopped calling my friends. They would ask me how I was doing and I couldn’t tell them, and I couldn’t tell them why I couldn’t tell them. It was the “blank slate” time after time.

I’m almost five years out of treatment. Things have gotten better but I still struggle with Chemo Brain every day. I’m an actress, musician and songwriter. But my creativity is gone. When I started to notice that I couldn’t remember my lines, I went back to acting school so I could get into the habit of studying scripts. It has helped some. I have been able to play drums. I think because my body takes over. I’ve been drumming for so long the body memory lets me play. But I haven’t been able to write a single song. My friends tell me it will come back, but nobody knows for sure whether it will or not.

It’s been very hard, and really depressing some times. I imagine it would be worse if I was alone in this. But I’m not. I have the support of other BCRC women – women who ‘get it’ because many of them are struggling with the same thing. The BCRC support groups are a safety zone for me – a place where I don’t feel embarrassed and I don’t have to defend myself. When I can’t think of a word, or finish a thought, we just look at each other and laugh in comradery, in solidarity.

I’m so grateful I had a place like BCRC to go to. A place where I could meet other women. A navigator I could call anytime. It has made all of this a little easier to bear. October is Breast Cancer Awareness Month and I think most people are aware women get breast cancer. I’d also like them to be aware of Chemo Brain and to know the struggle can continue long after treatment ends. I’d ask them not to judge or rush to say they can relate. Patience would be more meaningful and a hug would go a long, long way.


BCRC-logo-simple-horizConsider making a donation to BCRC this October and give the gift that makes a real difference for the women in Central Texas facing breast cancer right now. Visit bcrc.org to learn more about how we can help, or click here if you wish to give back today.

 

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1 Comment

  • Krystle Zuniga Reply

    Maria, thank you for sharing your experience. Chemobrain is definitely a real thing, and there is a growing body of research identifying changes in brain structure and function during treatment. Hopefully this helps others know that it’s not all “in their head,” and that there are true physiological changes. Our lab at Texas State is currently conducting research on how nutrition and physical activity may help brain function after treatment, and we hope to help survivors recover from treatment faster!

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