Chemo Brain: A Breast Cancer Survivor's Commentary

Started by anonymous, September 24, 2015
56 replies for this topic
anonymous

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Posted on
September 24, 2015
Chemo brain. I am glad the “experts” have finally decided that chemo brain is real. Gee, thanks. What were they thinking? I mean, let’s put harsh chemicals to kill the cancer in our bodies, call it chemotherapy, add a few steroids to help manage side effects, possibly remove hormone-generating organs like the ovaries and uterus if they aren’t already shut down by the chemo, and then conclude for a few years with some medications that suppress any poor hormones that might be left.

After that, let’s turn around and try to believe that none of that impacts the organ called the brain? In a previous post, I mentioned I can’t donate a kidney because of cancer, but hey, maybe the kidney got hurt by the cancer or the chemotherapy but the brain came through in shining glory? Yeah, sure. Ha.

Don’t get me wrong: Chemotherapy has saved and extended many lives, including my own. Chemotherapy is a good choice in a bad situation — cancer in the body. I am just frustrated because I sometimes don’t feel like I think like my old self. Did that make sense? My brain doesn’t feel as competent as it did before I had cancer. My communication skills have deteriorated. Words come out of my mouth that don’t match the thoughts going on in my head. I forget stuff, sometimes quite a bit of stuff. There's clumsiness. There is a mental and physical fatigue that wasn’t there before.

It could certainly be argued that some of this stuff is just age-related or maybe early onset of dementia or some other physical diseases, but for me, it sure seems like the timing matches suspiciously with the chemotherapy. It is too much of a coincidence. If it looks like a rose and smells like a rose ...

Again, don’t get me wrong: I am grateful to be alive. I am happy that my hair (most of it, anyway) has grown back. I am trying to help others and to enjoy my life. I actively pray. I actively practice gratitude. I actively choose to slow down and live in the moment. I distract myself when I need to. I rest when I am too tired to go on. I work with my hands when I feel anxious. I use any and all coping tools available to me. I am, in fact, coping. Most days I cope quite well, really.

People say, “Oh, you are so brave and strong. Look at what you’ve been through — surviving cancer twice.”

Yes, I am still here. No, I am not brave and strong. I did what I had to do. I got through my cancer. I am not some brave war hero. Cancer is a disease. I really don’t like it when people who don’t understand try to glamorize it. Maybe they are just trying to be nice. I certainly am not a courageous soldier. In fact, sometimes I just feel like damaged goods or even one of the walking wounded. There are no medals for that. I am just grateful to be here still participating in life.

Some days or some moments, it doesn’t feel like enough. Am I being greedy? Maybe. Maybe deep down on some days at some moments, I still want my old life — or rather, my old self — back. Sometimes I get tired of coping. Sometimes I get tired of having to cope. I guess everyone has stuff of some kind to cope with. Don’t get me wrong: I know I am still me. I still feel like me, but it is a different me. Do you ever feel this way? What helps you cope with chemo brain?
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JenAnn

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Posted on
September 29, 2015
Great article Barbara! And your 2nd to last paragraph is EXACTLY how I feel! I hate being told I am so strong! What other choice did I have, but to kick some cancers ass!? At the time of my cancer, nearly 4 years ago, my twin boys were 4 years old! Fighting my cancer for them was all that mattered. But for me, I don't feel as strong as people think I should be. I actually think I feel weaker and more vulnerable. As for the chemo brain, I will always remember my doctors words before I started my treatments. "Are you a multi-tasker?" I said, "Yes.". She said, "You likely won't be anymore." I know that I used to juggle a ton of balls at one time in my daily life, and I know that I can't do it anymore. I become overwhelmed so much easier than I ever used to. Thank you for your sharing your words and reminding me that I am not alone. Prayers and hugs to everyone battling the "Big C" at this time! You can do it! You are not alone! And prayers and hugs to everyone that has beat the beast! Jen :-)
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Bonnie

Member
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Posted on
September 29, 2015
As a two time survivor of Breast Cancer I also know what you are saying. There is a book by Ellen Clegg,ChemoBrain, How Cancer Therapies Can Affect Your Brain. It will let you know you are not alone or going crazy. I did think I was going crazy!! I am one of the survivors that was interviewed for this book. I hope this book will help answer some of you questions about Chemo Brain. It is real. Best of luck to you. Bonnie
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Dr Jeanne

Member
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Posted on
September 29, 2015
Yes, thank you so much for verbalizing the problems I faced over the 17 years since my chemotherapy to treat breast cancer back in 1998. I opted for radiation therapy too, even though it had not been found to increase longevity in post-menopausal women. Please believe me when I say that NO ONE has ever made mention of the word, "chemo-brain", to me at any time. I noticed all the symptoms you mentioned in your blog: clumsiness, living in a brain fog at times, being unable to draw the exact word I wanted out of the air to use in conversations, a definite slowness of mental abilities vs those present pre-treatment with a lack of competency in mental alacrity which was remarkable in my younger years (according to others), plus a general feeling of incompetency in my job performance over the past 10 years but was convinced I was in the early stages of dementia or Alzheimers since I will be 70 years old next month! Hallelujah! It doesn't make me like the challenges I face any better, but at least there is evidence for a solid reason other than dementia that has caused these changes in me. Thank you, CURE, for the blog space to discuss and learn about any new treatments for chemo-brain!
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Kris

Member
0 Replies
Posted on
September 29, 2015
Thank you for your article. It perfectly describes the syndrome and its frustrations, and was very validating to read. After two stem cell transplants in five years, my brain was pretty sodden. I happened to read an article in Cure that mentioned a trial that got some results from using Ritalin in these situations. Some results are better than none, so I asked my oncologist to prescribe it. It has been very helpful! I have been less addled and fatigued since I started this. As another poster suggested I have been using the calendaring/reminder apps on my smartphone and have gotten over my embarrassment at using "suri." hang in there ~ they,re starting to take us seriously!
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Becca

Member
0 Replies
Posted on
September 29, 2015
Finally someone who knows how to put the words to how I feel. Thank you! It's like you're in my mind. It's weird to think something but the words come out different. Or you know you know something, but that something just slipped away. Some people thong I'm just losing it. Kinda depressing. Well, thanks for putting into words for me.
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patml

Member
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Posted on
September 29, 2015
My husband had melanoma. We were told chemo was his only hope. I did notice behavior changes when he had his treatments. We were told that chemo could bring on temporary dementia. Temporary? I don't think so. A dear friend of mind was also treated with chemo for ovarian cancer. She was a young widow with two small children and very active in her community. She had received several awards for her involvement. She decided to go for a law degree. She was doing well with her studies until the cancer and the chemo treatments. The treatments left her unable to remember things. Her studies suffered, and she had to drop out of school. It was discovered that there was a misdiganosis - she did not have cancer after all.
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