For the love of all that is holy -- chemo brain!!

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mimivac
mimivac Member Posts: 2,143 Member
edited March 2014 in Breast Cancer #1
Ok, this is getting out of hand. I am sitting here writing talking points for a speech my boss will give at the United Nations later this month. I just spent 2 minutes trying to spell "consecutive." I spelled it with a "qu" about 10 different times. Luckily there is spell check, or I would be out of a job fast. Will I remain this dumb I ask you? I have so many years left to work. Wish I could retire, but I have 30 years left!! What to do?

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  • Aortus
    Aortus Member Posts: 967
    #2
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    Not necessarily chemo brain, Mimi
    I was born a perfect speller. I must have inherited it from Dad, because I had to teach Mom how to spell by grading her menus and shopping lists. It's a wonder the woman allowed me to live.

    But right around the big 4-0, I started having spelling brain farts not unlike the one you describe. I could suggest a spell checker, but it would be hypocritical of me. I'd rather have my hands lopped off than use one myself.
  • sausageroll
    sausageroll Member Posts: 415
    #3
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    Aortus said:

    Not necessarily chemo brain, Mimi
    I was born a perfect speller. I must have inherited it from Dad, because I had to teach Mom how to spell by grading her menus and shopping lists. It's a wonder the woman allowed me to live.

    But right around the big 4-0, I started having spelling brain farts not unlike the one you describe. I could suggest a spell checker, but it would be hypocritical of me. I'd rather have my hands lopped off than use one myself.

    Mimi
    I am sure it will pass Mimi. I think all these treatments and medications do things to our body that we just don't understand and neither do the doctors at times.
    I drove myself into the hospital today as I always do..wanting to keep some independence! However, I knew something was not right...so felt it was dangerous to drive home. OH picked me up and my truck is sitting in the hospital garage...probably will cost me more than the surgery!!!!

    You are so bright Mimi, this must really be bothering you. Take care and just wait for it to get better.
  • mimivac
    mimivac Member Posts: 2,143 Member
    #4
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    Aortus said:

    Not necessarily chemo brain, Mimi
    I was born a perfect speller. I must have inherited it from Dad, because I had to teach Mom how to spell by grading her menus and shopping lists. It's a wonder the woman allowed me to live.

    But right around the big 4-0, I started having spelling brain farts not unlike the one you describe. I could suggest a spell checker, but it would be hypocritical of me. I'd rather have my hands lopped off than use one myself.

    Born perfect!
    Well, I am certainly NOT a natural born speller. But Aortus, I am not 40 yet! I have 6 years left. I must be starting my deterioration early. LOL.
  • Kylez
    Kylez Member Posts: 3,761 Member
    #5
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    Combo
    Mimi, I think it is a combination of everything that we have had to go thru. Our mind needs

    to heal, as well as our bodies. It just takes time and patience.
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #6
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    Mimi I'm sure it will pass.
    Mimi I'm sure it will pass. You are young yet but you've been through a lot and I'm sure stress plays an important part. I used to be really good at spelling but not anymore. I downloaded the google toolbar that includes spellcheck........hey, I'm not proud! But I'm over 50 and on estrogen blockers so I blame that :)
    jan
  • confused123
    confused123 Member Posts: 251
    #7
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    phoenixrising said:

    Mimi I'm sure it will pass.
    Mimi I'm sure it will pass. You are young yet but you've been through a lot and I'm sure stress plays an important part. I used to be really good at spelling but not anymore. I downloaded the google toolbar that includes spellcheck........hey, I'm not proud! But I'm over 50 and on estrogen blockers so I blame that :)
    jan

    There really is chemo brain!
    There really is chemo brain! I have it. I forget what I am talking about in the middle of conversations. I just stop talking and then say what am I talking about. Luckily most people are listening and can tel me. It is kind of like pregnancy brain but worse I think. I am not yet 40 either! 7 years left so it isn't old age.

    Kim
  • CR1954
    CR1954 Member Posts: 1,390 Member
    #8
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    I don't know.......
    I am in mentalpause, with chemo brain thrown in. I can't remember anything, I can't spell anymore, and I have had to get new passwords everywhere at least 5 times because I don't know what they are!

    Good thing they make "day of the week" undergarments!

    Now, what did you want to know?

    CR
  • Akiss4me
    Akiss4me Member Posts: 2,188
    #9
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    CR1954 said:

    I don't know.......
    I am in mentalpause, with chemo brain thrown in. I can't remember anything, I can't spell anymore, and I have had to get new passwords everywhere at least 5 times because I don't know what they are!

    Good thing they make "day of the week" undergarments!

    Now, what did you want to know?

    CR

    I want to know....
    where to get "day of the week" undergarments!! :) Pammy

    Hang in there mimi!!
  • rjjj
    rjjj Member Posts: 1,822 Member
    #10
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    CR1954 said:

    I don't know.......
    I am in mentalpause, with chemo brain thrown in. I can't remember anything, I can't spell anymore, and I have had to get new passwords everywhere at least 5 times because I don't know what they are!

    Good thing they make "day of the week" undergarments!

    Now, what did you want to know?

    CR

    HA CR
    I remember those "day of the week" panties. Now I just have big girl panties..and have to pull them on every day!! haha.
    And Mimi..I feel your pain good thing I don't have to type /spell for a living. I would starve to death. good thing you all try to figure it out!
  • cats_toy
    cats_toy Member Posts: 1,462 Member
    #11
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    I thought it was Sunday this morning
    couldn't figure out why I had set the alarm. Figured I would get up let the cats out, take my pills and go back to bed. Saw that my hubby wasn't in bed, went downstairs and saw that his car was gone. I was so confused, I tried to remember if I had gone to work yesterday. It took awhile but I finally got it. Strangest feeling though. And yes, chemo brain and being slammed into menopause by the chemo really sucks sometimes.
    =^..^=
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    #12
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    CR1954 said:

    I don't know.......
    I am in mentalpause, with chemo brain thrown in. I can't remember anything, I can't spell anymore, and I have had to get new passwords everywhere at least 5 times because I don't know what they are!

    Good thing they make "day of the week" undergarments!

    Now, what did you want to know?

    CR

    LOL
    Gotta say this made me laugh!!!!

    Maureen
  • Jeanne D
    Jeanne D Member Posts: 1,867
    #13
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    rjjj said:

    HA CR
    I remember those "day of the week" panties. Now I just have big girl panties..and have to pull them on every day!! haha.
    And Mimi..I feel your pain good thing I don't have to type /spell for a living. I would starve to death. good thing you all try to figure it out!

    HUH?
    Day of the week panties? Never heard of them..lol
  • Alexis F
    Alexis F Member Posts: 3,598
    #14
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    cats_toy said:

    I thought it was Sunday this morning
    couldn't figure out why I had set the alarm. Figured I would get up let the cats out, take my pills and go back to bed. Saw that my hubby wasn't in bed, went downstairs and saw that his car was gone. I was so confused, I tried to remember if I had gone to work yesterday. It took awhile but I finally got it. Strangest feeling though. And yes, chemo brain and being slammed into menopause by the chemo really sucks sometimes.
    =^..^=

    lol Cat!

    lol Cat!
  • susie09
    susie09 Member Posts: 2,930
    #15
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    Alexis F said:

    lol Cat!

    lol Cat!

    Chemo brain is real. There
    Chemo brain is real. There have been articles published about it.
  • blabrn1
    blabrn1 Member Posts: 10
    #16
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    chemo brain
    This has been the most upsetting side effect for me. I worked every other week during chemo as a hospice nurse. I was told that my taxol was going to be the most toxic part of my treatment, and indeed I lost most of my finger and toe nails in addition to all of my hair. It was a sight! I asked about the blood brain barrier aspect and potential side effects specifically because I have a history of depression and ADHD, that I had worked very hard to get good control of. I was told that if I did have any memory problems that they would be temporary, just like the hair loss. I believed that. I had no reason not to.
    However, after my chemo I went back to work full time and could not execute the tasks necessary to care for my patients safely. So, I dropped down to part time, but could not complete my documentation. After about 6 months of this and getting lost on the way to my doctor appointments and not being able to find my way home (very scary) I got a GPS, but at times could not understand what she was saying. I heard the words, but they had no meaning. I requested a neuro psych test. This was done. I was very high functioning, but the areas that I complained about did show up on the test in the average to low average functioning ability. During the testing, I cried because it was the first time that I understood why I could not function at work. I have always looked at a page of information and then just knew it. Now I have to look at each item many times and try to retain it with varying degrees of success. I keep a calendar in my purse...but in my purse it is gone. So, I also keep a calendar on my wall in the kitchen where I can always see it.
    At first the doc was condescending and said, well, you're fine...you're average. I told her that I did not know how to function this way. She told me there was nothing she could do for me and she did not have to take my anger. I was crying. I asked if she could do her job as her definition of average was. I've lost clinical vocabulary that I"ve known for over 20 years. It's gone. Maybe I can relearn it? Maybe it will come back.
    Then I received a research article from my hospital that indicated that 20% of women are affected by chemo brain to the point that it affects their day to day lives. For others who have previous brain issues such as epilepsy, ADHD, depression ( I have two of these), the rate of incidence is even higher. Normally they say about 6 months of affect, but I was told in the last 6 months that it can be 2 years or more.

    When I confronted my oncologist with this research article from her hospital and asked her why she did not at least tell me this, she said, "why, what would you have done differently?". I'm triple negative, and from the research that I've done, the treatment was the best option for long term survival for me. But the choice to take it was still mine to be made. I do not see this as informed consent. I told her, well, for one I would not have quit my job that had unlimited sick time to move closer to my fiance! She just said, "oh".

    They did try to put it off to exacerbation of my ADD or to chemo induced menopause. I'm sure that my ADD did make my response worse....that's why I told them about it in the beginning and why I asked my question about blood brain barrier. As far as the menopause, I get that......but still when you are in your 40's and suddenly menopausal....why not some support for the changes. Not just empty reassurance, but crib notes for tricks that work. Naturally occurring menopause allows women time to assimilate and accommodate. I and others get the crash course. I do not believe that it has to be so difficult with a little coaching. It reminds me of the days in the beginning when menstrual cramps hurt so bad I passed out but before that it was poo-pood. However, birth control pills for a short time regulated and eliminated the pain. Saying its not really a big deal by others doesn't make it less so for the individual.

    From what I read, chemo brain is tolerated and for some not even experienced.

    Yesterday....I received a letter from Social Security indicating that I meet requirements for medical disability. They will review my case again in 24 months to see if appropriate treatment will improve my situation. National Institute of Health in 2004 did put out guidelines for standards of care for breast cancer survivorship. They make sense. I would like to actually try them and see how they work.

    I used to work with executive management and did hospital audits and saved my health system millions of dollars through process improvement and audit appeals. I still tend to think in algorithmic terms, but I cannnot sustain it. I believe that the brain is plastic and that new pathways can be established. I do believe that. I believe that it does take time. I beleive that we should be told this up front so that we can prepare on whatever level we need to do that.

    I would say to keep a journal during this time of your life..daily. And keep a binder of all of your medical interactions. Get what you need and are entitled to to recover fully and to your best potential. I believe that knowledge is key.

    Best wishes.

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