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How has Chemo Brain affected you?

September 10, 2009
by Vicki Tashman

"I became aware of my chemo brain even before I completed the eight rounds of chemo, but since I knew to expect it, I wasn't overly concerned. I remember describing it as being similar to things lost in fog - you know they're there, you just can't quite grab them. And I rapidly lost the ability to multi-task, which I used to not only pride myself on but depended on. The "fogginess" has very greatly improved now that I am 2 years out, but the multi-tasking thing - not so much. It's better, for sure, but I have adjusted, knowing that if it is detailed information or especially anything with numbers, it has to have my full attention or I'm not going to retain it. I know I'm not as "sharp" as I was pre-chemo, but then again I'm not dead or dying, so it's a pretty fair trade-off to me."
Mo W., Pink-Link member
"I believe I have mild "chemo brain" as a result of chemotherapy several years ago, but it's hard to tease out which symptoms are a result of chemo, which are the result of menopause, and which are the result of normal aging.  Lots of my non-cancer survivor friends report the same issues, but here's what I've experienced.
I have trouble with word retrieval and often substitute a totally unrelated word for the one I want, both in speaking and in writing.  I also lose my train of thought in the middle of a sentence.  But the biggest symptom I have is actually "chemo fingers."  I used the computer a lot and have for many years, including many before cancer.  I was a very competent and relatively fast keyboarder.  I now make mistakes every few words, and what is especially frustrating is that it often takes me 3, 4, even 5 tries to correct my errors.  This was especially bad during chemo and for about a year after completing chemo.  It improved somewhat for a couple years, and then, after my oophorectomy and starting Aromasin instead of tamoxifen, it has gotten worse again.  It now is as bad as or even worse than it was during chemo.
My oncologist does not seem too concerned and that's OK with me because it is not interfering in a major way with my quality of life."
Kathi H., Pink-Link member
"Fifteen months, that is how long ago I finished my eight rounds of chemo.  During chemo treatments I had a difficult time focusing on television shows, movies, and any kind of reading.  I even forgot to pay a couple of bills because I just couldn't remember things correctly.  When I returned to work, teaching world history to high schoolers, I had such difficult time remembering facts and the material I was suppose to teach.  When I would teach a class I never had to use notes and when I returned to work I had to use my notes because I couldn't remember.  Learning students names was a daunting task and took me over six months to learn.  Teaching requires a person to multi-task constantly and I seriously struggled with this day after day. I had to specifically ask a co-workers of mine to remind me about getting grades in or other work related deadlines because no matter how many times I wrote it down I would forget.  Day after day I would come home and just cry feeling as if I had regressed as a professional in the teaching world.  Not only did chemo brain effect my professional life, but it effected my personal life as well.  My husband would talk to me about something and I would forget the conversation all together, or I would forget I had to pick my daughter up from school.  I was so frustrated and felt lost.  Before chemo I was sharp and could remember everything and multi-task was second nature.  Now I was not remembering long term memories or short term memories.  I am an avid runner so I would hit the treadmill and just keep running my frustration out on the tread mill.  Then I forced myself to begin to read 10 minutes a day.  It has been a long road but my fog is lifting.  I can remember things, but sometimes my memory will fail me here and there.  It is a daily challenge to get my mind to function like it did, but I keep reminding myself I am will never be the same after breast cancer and so like my body, like my spirit, my mind must evolve as well." 
Celeste R., Pink-Link member
"CHEMO BRAIN….gotta love it!  In the middle of a sentence, forgetting what I was saying!  How about walking into the kitchen and forgetting what you went in there for, only to remember a few HOURS later that you were hungry.  My son laughed for days over that one!  Or trying to talk and not being able to get the words out!  Frustrating, especially when you run a business.  Just feeling in a general fog on some days.  But the best thing…when I went in for my last check up with my oncologist, I had to meet with his physician’s assistant.  I mentioned something about chemo brain and she said, “Well, I don’t really believe in chemo brain.”  So I put my hand on her shoulder and told her, “Let me know what you think AFTER you have gone through chemo!"
Lisa S., Pink-Link member
"I can no longer multi-task, moderate tasks seem overwhelming, I have difficultly with word retrieval and, in general, I'm in a "fog".  I had chemotherapy and everyone keeps telling me that I have Chemo Brain."
Karen, Pink-Link member
"A lot of info about Chemo brain is appreciated, because even though I had 6 months of Chemo back in 2005, I'm still "slow".  I haven't been "right" since!  The trauma of it all was just too much for me."
Laura K, Pink-Link member
"I finished chemo last May. I had 4 treatments. I work in an office where multi-tasking is a "must", and when I get home, I'm worn out! I do feel like I have lost my edge - I can't keep up with everything, and many times, in conversation, I can't find the right words. I'm glad to know I'm not alone!"
Christina, Pink-Link member
"During my chemo and for approximately two years after, chemo brain was a big concern.  When I left the house each day – whether going to work or even the grocery store – I had to determine how to get there.  I could never remember the roads.  So many times I would be on my way to work and realize I had no idea where I was.  Sometimes I would think I had already passed the same area several times and was lost.  I wish now that I had gotten a GPS system to help me.  To keep up with my many medical appointments, I purchased a PDA to remind me of them.  I relied on the alarm to keep me on track.  In conversations, making a complete sentence was next to impossible.  I knew what I wanted to say but couldn’t remember the words.  My father has suffered amnesia from a brain injury during the Korean Way.  So after a year of cancer treatment, I went to Florida to visit my parents and get some needed rest. My father was instrumental in helping me deal with my loss of words.  His advice, “Don’t dwell on the words you want to remember, just say something like  “oh you know” or “whatever”.  When I stopped worrying about what I wanted to say, it became a little easier.  One of the worst times I had after that occurred in a meeting. I was in charge of a committee and was giving a report.  I was introducing the other members and couldn’t remember anyone’s name.  Thankfully they very quickly introduced themselves.  Getting over chemo brain was a long process but I made it through.  The one thing I will do “next” time (which hopefully will never be) is to get a GPS system for my car.  Then I will only have to remember my left from my right!"
Linda T, Pink-Link member
"I'm so glad you mentioned chemo brain and I'm so glad that doctors are finally taking it seriously.  When I complained about it during chemo, my oncologist just shook his head and tried to convince me that I was imagining things.  That was 2 + years ago and I still "lose words" with some degree of regularity.  It's really scary when I can't remember my surgeon's name or my cell phone number, for instance, and the harder I try, the farther it slips away.  I was a practicing RN when diagnosed, and after a medical leave of absence during surgery and chemo, I tried to go back to work. But found I couldn't remember simple things and I was afraid I was going to do something really stupid, so I decided to retire 2 years ahead of schedule.  I did not want to end my career on a sour note!  I think I'm better than I was at that time, but my concentration is still poor at times, and I'm just not as sharp as I once was.  I hope new research will give us some answers to cause and treatment." 
Jane H., Pink-Link member

PS  When the topic comes up in a group of BC survivors, there is never any doubt among those present that chemo brain is for real!
"I'm about 7 months out from my TAC chemotherapy for stage 3C, triple negative breast cancer.  Besides the chronic fatigue from the surgeries, chemo and radiation treatments, the chemo-brain is by far the most frustrating lingering side effect of cancer treatment.  I tell my friends that I feel like my IQ has dropped by half and explain to my co-workers and colleagues that the symptoms are like vapor-lock in my brain.  It is a challenge when you stare at a picture of something, know what it is, but can't find the correct word.  Or start to multi-task and find that you don't complete a single thing that you started...I was folding clothes from the dryer last night and stopped to answer the phone in the kitchen, came back 2 hours later when I wondered where the light was coming from (the open dryer) - never even remembered after the phone call that I was folding laundry, just moved on to something else without a clue.

I find that I have very little patience with myself over these chemo-brain symptoms.  I am a clinical psychologist and before getting cancer would routinely test people for memory and other brain functions to identify deficits and help them regain function.  Once I started noticing the chemo-brain or chemo-fog symptoms, I contacted a colleague and asked about psychological testing to determine if my symptoms were "real" or part of the stress of cancer treatments.  My biggest challenge in terms of the testing is that I have the answers memorized and while I would struggle for the answers, I'd be able to give the correct answer from memory.  We decided that testing wouldn't help much.  So, I am now the proud owner of 6 "build your brain"
type work books and am trying to regain the lost functions that frustrate me so much.  I find the books helpful, but more interesting to me is that I have identified a pattern in the puzzles that are the most challenging.  Those puzzles that require logical reasoning along with the ability to organize information in spatial/visual relationships send my brain into vapor-lock, I can't even understand the instructions sometimes!  This from a brain that before chemo could complete medium to hard Sudoku puzzles in ink the first time through in less than three minutes (yes I am a math geek that would time myself for a challenge).  These days I rely on lots of lists, sticky notes, planners, and a daily log of work to try and keep track of things.  But it never ceases to amaze me of the extreme differences between my pre and post chemo memory and brain functioning.  I sure hope that my chemo-brain symptoms will diminish over time.

I joked with my oncologist when she asked about my chemo-brain symptoms, "I have a PhD, but don't think now I could even get a GED."
Janice, Pink-Link member
"Being diagnosed with breast cancer at the age of 29 was shocking to say the least. The most shocking part was not remembering normal, everyday things. My family used to count on me to remember all details, from the trivial to the important. After chemo, I often couldn't even remember what I had eaten the previous day. Many days, the years since then seem to be a blur, even holidays and special occassions are a foggy dream. It has now been three years and I will never be the same. Most people I have met since then just think I am forgetful. It saddens me to know that I was not always that way. Instead, I was aware of everything and everyone, down to the most minute detail. Now I must work hard to remind myself of everything. I write everything down and constantly refer to different lists I make throughout the day. I am thankful for every day that I live and am happy to be a survivor, but I long to be as I was before cancer. I miss my brain the most."
Anna S-J, Pink-Link member

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