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Chemo Brain

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Brain Damage
Chemo brain is real.  The chemo drugs damage your brain and this is very frightening to those of us affected.  Your brain actually shrinks.

The little research that has been done is enough to prove that chemo affects many people’s brain.  Everybody’s chemo experience is different because everyone is getting a different combination and dosage of drugs.  Some research is being conducted specifically on the effects of 5-fluorouracil (5-FU). Other research indicates that people with the Alzheimer gene are more at risk of chemo brain.

What are the symptoms?
Memory lapses, poor concentration, difficulty multi-tasking, language problems like forgetting words and names.  The words come out all mixed up, or you can’t find the right ones.  Difficulty making decisions.  Less common are seizures, vision loss and dementia.

What is it like to have Chemo Brain?
The brain damage might make you feel stunned, and even high, in a strange way.  Not quite like a hippie on LSD, (no hallucinations), but like a hippie after all the drugs after a decade of partying are worn off, and you  try to be normal, but you’re not.  Sometimes you will need people’s help.

Simple things can become challenging.  You have to concentrate harder.  People might not understand you.

However, you can go back to normal life but you must work to restore your brain.  It can take years.  All the survivors that  I know personally, have gone back to their old jobs, with almost no problems caused by cognitive damage.  I have heard of others who have not been able to cope with jobs that rely on a sharp memory.

I had two jobs before, I quit one that I hated, and kept the one I liked.  I am a college teacher, and I think that I have become a better teacher since chemo.  I am more focused (because I have to be), and I have become more structured.  I do have memory lapses at the strangest moments.  On the other hand I can randomly remember things that surprise me.

I asked my family if they thought I had fully recovered from chemo brain and I was surprised at their answers.  (I finished chemo 4 1/2 years ago.) My husband said “You have changed in some ways.  You have become  savant in areas. Your priorities have changed.  You are easily frustrated, and have trouble understanding things…things that you really should have no problem with.”  My Daughter said “I don’t really remember what you were like before, but I think you are about 90% normal. If  I explain something with a diagram to you, you can understand it much easier.  Maybe you were always like that.  Maybe your ability to do things in your head got worse.  I was only 12 when you got sick.”

Mood Altering Effects
In addition to the chemo you know you are getting, you may also be getting other drugs that supposedly counteract your bodies immediate reaction to these  drugs, such as steroids.  That is why you rarely see people vomiting at chemo.  They drug you so you won’t vomit til you get home. These drugs will also effect your mood and emotion.

Also you may go into immediate menopause which could effect your mood, but again, this is only temporary.

Bad advice from Doctors
Medical advice is to do puzzles, put up post-it notes to remind you,  and keep a spot for your lost items like keys and phones. (Kill me now. ) More drugs d-MPH and Ritalin are prescribed for chemo brain.  I will stay away from these.

My excellent advice
1. Avoid multi tasking –  I  find that I am fine if I I  only do one thing at a time.  But you have to train people around you by telling them that you are going to do one thing now, and then tell them what it is.  During and after chemo don’t even expect to talk and make lunch at the same time. Choose one thing at a time.  You will get a bit better at multi tasking  with time. But I still avoid multi tasking when possible.  It is more efficient and less stressful to do one thing at a time. Multi tasking is overated.

2. Don’t drive – I never drove during  the whole 6 month chemo treatment or for weeks after .  I drive a lot now, and am fine.

3. Make sure your  family knows that you are mentally incapacitated. Yes you may be the butt of jokes like I am sometimes, but they will help you, and be patient with you if they know what’s going on.

4. Be happy when possible  -It is often appropriate to be very sad, and angry, but practically speaking, if you are depressed it effects your brain function.

5. At social gatherings – drink less  alcohol then everyone else!  You will seem smarter.

What I am doing to recover

1. Nutrients – Everyone recovering from chemo needs a healthy diet, low in sugar and grains and  extra nutrients

For my brain, I take

  • NAC
  • fish oil 1200 mg a day
  • Flax seed oil
  • Vit Bs
  • Vit E
  • Vit C
  • Grapeseed extract
  • Curcumin
  • Zinc
  • Lecithin
  • MSM

2. Exercise – all exercise will help your brain.  Once you start to recover try exercises that challenge your brain.  Since chemo I have joined an ice hockey club, studied yoga, and have just started cardio-kickboxing class.

3. Creative pursuits – for me, returning to drawing and painting have brought back my hand-eye coordination, spacial sense, and made my brain seem to reconnect.  I think playing a musical instrument would work too. Meditation likely has a similar affect.

Hey, if I can almost fully recover, you will for sure!

Peace

Author: Rhonda

Documenting all the things I have done in an attempt to survive cancer.

8 Comments

  1. I had o6 for chemo of Ovarian cancer. When my treatments were over I started to have lots of side effects . I could not concentrate and would miss word up several things, now my neurologist said I could be in early Alzheimer. I am really wondering if I still have the chemo brain and I could not have Alzheimer. Could you get it for the chemo.

  2. I am 9 months out from a double mastectomy. I have finished the 3 month chemo that caused lots of problems including chemo brain. Thanks for all the comments as the end of the tunnel seems so far away. I also have lymphedema and am dizzy all the time. This resulted in my losing my balance and falling on concrete steps going out to the yard. My bad arm took all the abuse so I am very fearful of the outcome. I am grateful that no bones are broken. So, my focus has narrowed and I will follow your suggestions about focus on one task at a time.

    Jane

  3. Hillary, I like you am 8 years out. I had Hodgkins Lymphoma with only chemo, they could not radiate my heart. I know and have that my personality changed. I have a very difficult time with articulations. Thoughts jumbled. I jump from one thing to something totally different in conversations. I was a 3rd grade teacher and took this year off. I thought it might be better. I am only way more aware of the problems. I do not have such responsibilities on me, yet do the same things. Some days I can say are better than others and I am learning to realize that. Sometimes I feel very odd. Somedays so very tired, like I don’t want to move.

    It has been very difficult and to have the doctor, psychiatrist and Neurologist to tell me I have not dealt with having cancer and need a counselor is at this point degrading and very dissolutioning. They don’t get it. I am in search of someone who understands and can help. I did for a short period of time take medication for ADD and have to say, it much improved issues. My son was only 4 at the time, now 12, noticed totally on his own the change as did many others around me. Not on it anymore because I ran out and after the 3rd visit to the Psychiatrist and my husband going with me, even he said no need to go back, she is not really listening. I took him so he could tell her. UGH

    When I am low, I look for things like this to reaffirm that it is real and not me! Thanks!!!!

  4. Hi Rhonda,

    I just found your blog and this post. I also have PCCI but most people I tell don’t believe it’s real. I will point them to your blog. At any rate, I was once a very creative person – but over the last eight years (was treated in 2002-2003 for bc with 6 rounds of chemo; 16 weeks of radiation) I’ve noticed a complete decrease in my creative abilities, decision making, memory – pretty much everything you describe above. Most doctors poo-poo the idea that PCCI exists, but I’m glad to see studies are now coming out with the fact that it does. It’s frustrating because you can “feel” the change in how you think. And it’s infuriating when your friends/family make fun of you because you can’t remember something or you mix your words up. I’ve heard some medical people say that it should go away within ten years. It has been eight for me… so we’ll see.

  5. This was very helpful info plus its nice to have someone else back up what I;m tired of explaining to my friends and family. I’m 27 now but back in April 2008 I received a very strong dosage of chemo for ovarian cancer. My PCCI(post chemotherapy cognitive impairment)it finally has its own too long name…anyway the chemo brain is extreme. i can’t keep up with the date, i barely remember much of anything and i have these terrible moments where i feel sharp stinging pains in certain areas of my brain. I used to work 2 or 3 jobs at a time but i haven’t been able to do one. i used to manage a home health care agency and assist in running my family’s nursing home. i had dreams of studying egyptology and meteorology now i can’t do that. i keep getting job offers from people that i have to turn down even though i so desperately want to work. i did try a year ago but i ended up having a mental break from lack of sleep and burn out. it was ridiculous. i was the kind of person who could read something once and never needed to study. i could read a novel in 2 days or less. recently it took me over a year to read 1 book but i have gotten better since and try to keep my focus. it literally hurts to think now but all you do is laugh to keep from crying. government disability keeps denying me any benefits so i’ve been making it by from the help of family. i was literally early retired because of this and i hope one day medicine can come up with better solutions. oh and did i mention i have severe arthritis, menopause and neuropathy? rapidly aged but still trucking along!

  6. Hi Lisa
    There really is light at the end of the tunnel! Just make sure those closest to you know what you are going through, mentally. So you all can laugh about it…People can misunderstand and get irritated if they don’t know why you did or didn’t do something, why you are confused, why you are taking so long, why you forgot and why you can’t do simple math.

    But the brain also heals!

    Rhonda

  7. Thanks for this! I was starting to think I was loosing my mind – now I find out that I am! lol At least an explanation and a light at the end of the tunnel perhaps.

    Lisa

  8. Pingback: The Chemo Brain Report by Susan Hardwicke, Ph.D. | Pancreas Cancer Information

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