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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BarbaraTako

Member
0 Replies
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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Maremare

Member
0 Replies
Posted on
September 24, 2015
Thank you!!! So good to see what I'm feeling put into words. I also have fibromyalgia which has this fibro-fog issue. And I smoked a lot of weed in the 70's. So I don't know if I'm coming or going!
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Kathy B

Member
0 Replies
Posted on
September 24, 2015
AMEN! As a two time survivor myself, I am also amazed by the residual impacts that the medical field acknowledge but chemo-brain -- nope we are just older. I love your reference that we can not be organ donors or blood donors, but to think our brains were impervious to the impact :-( As you say - I am happy to be alive, but I am not as sharp, numbers were locked in my brain and I could retrieve them at a moments notice. Now I forget things and have difficulty accessing my grey cells for details. I feel that I have been betrayed - but where are the studies? I'm still looking for those that address this issue. What helps me? I celebrate the person who invented post-it notes. I've learned to REALLY use my smartphone (example - with reminders based upon my arrival at the store). I researched memory tips at geriatric-based sites. Not quite where I fit in life, but there are a lot of tips to help with memory for seniors, so I take advantage of them. I also take solace in the fact that while my brain isn't as sharp, neither is my tongue. I judge less, listen more. Maybe I'm slower, but I try to remind myself, that the fast me is the one who became ill. This slower one enjoys life a bit more than others. If anyone hears of studies on this - share here please.
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JDW

Member
0 Replies
Posted on
September 27, 2015
Had chemo 6 years ago, still suffer with chemo brain. I was told it doesn't exist. It's very frustrating when you know something isn't right and doctors refuse to acknowledge it. I have fibromyalgia as well. I think if the doctors don't know how to treat something, the standard answer is to deny it exists. I would much rather hear that yes, we are aware this happens with some people but we don't know yet how to treat it. No, that doesn't make it any better but at least we know why it's happening, not that we are losing our minds!
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Netti

Member
0 Replies
Posted on
September 29, 2015
Wow,I have never heard anyone describe Chemo side effects as well as you just did. I had Chemo 5 years ago for breast cancer and can relate to every word you just said. I have day's that I just cant get the words out or some crazy word just jumps right out and then their is a moment of silence because the other person doesn't understand what you just said..lol, People just say you are getting a little older and the mind doesn't work like it use to.'they have no clue' Then the hormone blockers they prescribe you make you feel like your 80 and I just turned fifty today. People say that I'm a strong person to get through this and Glad everything is normal;I have no clue what normal is anymore so I just accept that I have to make my new normal. I am grateful and feel very blessed that God has a purpose for me but I do miss the old me sometimes. Thanks for sharing your experience Annette
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BarbTako

Member
0 Replies
Posted on
September 29, 2015
Barb here. Thank you all for understanding what I was trying to say in the article. It does help to feel less alone. I am blessed and grateful for your responses and great ideas.
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Ginny

Member
0 Replies
Posted on
September 29, 2015
thank you for saying what I think but don't say...I didn't have to have chemo and sometimes I feel guilty about that...my non cancer friends say WHAT?? my cancer friends say I get it....I feel guilty that you had to have a mastectomy and I didn't...but I feel like I have chemo brain w/o the chemo..finding words sometimes is hard..I do take Tamoxifen daily so maybe that is why....or maybe my brain is just overloaded...I celebrate 1 year cancer free tomorrow Sept 30, 2014 was my mastectomy. I am grateful for so many more things and pray that I show that more freely...And I am especially grateful for blogs and forums like this to talk to others who have been there. I feel like breast cancer has given me a mission to help others who have also been diagnosed. Trying to get our breast cancer support group started up here in our local hospital where I work but it is hard going for some reason. Thank you again for your blog
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lkmystique

Member
0 Replies
Posted on
September 29, 2015
I noticed right away that my mind couldn't seem to remember things that used to be so easy for me. I used to be a walking phone book, if someone needed a phone number they always said ask Lisa. I'm lucky now if I can remember my own. My chemo nursed asked me a question one time and I said I don't remember, in fact I don't remember a lot of things lately. She immediately said you have chemo brain. I was relieved, but my question is does it ever go away?
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B-Hyped

Member
0 Replies
Posted on
September 29, 2015
I went through 72 doses of chemotherapy 5 years ago (over a 1-year period) and I am not the same person I was before 2010. I sometimes believe it is the cancer itself that changed me, but I really believe that the toxic chemicals pumped into my body and through the channels of my brain have played a larger role than the cancer in making me the cynical and pessimistic person I am today. My brain is wired way differently now than it was before the treatment. I am thankful to be alive 5 years later, but wishful that I can once again be the "happy" person I used to be.
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Kathy in Florida

Member
0 Replies
Posted on
September 29, 2015
THANK YOU so much for writing this!!! Barbara, you have said eloquently what my chemo brain doesn't allow me to say! I had chemo in 2012-13 and still have the same fog. Aromatase inhibitors don't help with this either. My former career is gone...too many details, too many numbers and too much stress. I'm trying to live each day to the fullest and be grateful than I'm NED (and I really am grateful for that). However, my fights with disability insurance and their tons of paperwork only underscore the reality that many still do not acknowledge how serious chemo brain really is. Thank you for speaking up!!!!
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