Chemobrain: War, Then Peace

Posted on: May 2nd, 2014 by
16

Chemobrain is real.

Ask any patient receiving or who has received chemotherapy. Some of us recover fully from the cognitive dysfunction resulting from toxic chemicals dripped into our bodies. Others do not. And some, like me, recover a bit after treatment but never seem to quite regain their mental sharpness and stamina and focus.

For me, chemobrain has been a sad, frustrating reminder of cancer. My oncologist told me that chemotherapy should not be having an effect on my brain for so long after treatment. Blame it on depression. Blame it on menopause. Blame it on stress.

But I and at least a few experts know better. I even reviewed a book on this condition.

Chemobrain is real. And, yes, I’m a card-carrying member of the Chemobrain Club.

I’ve tried to describe to those never having been affected by chemo what this condition is like. For me, it’s a fog rolling over my mind, causing facts to no longer have that stickability — as soon as I learn something, it often flies away rather than sticking to my brain. I must write everything down, and my notes are usually all in a jumble, not like in my neat pre-chemo days. Thank goodness for Evernote on my iPad Mini. I am also so grateful to my other best friend and personal assistant — my Google calendar, which syncs all of my appointments and meetings with my Android phone.

Yes, technology provides the necessary cover-up, so I can pass for “normal-brained,” whatever that means.

Prior to chemotherapy, I took my smarts for granted. I was sharp back then, remembering even the minute details of daily life. I remembered all my appointments and obligations without using reminder tools. I also had a long attention span and intellectual stamina; I could read challenging materials for hours.

Fast-forward to today. A fog still resides in my brain, and I know I’m not the same as my pre-chemo self. After years of brain-activity exercises such as crossword puzzles, Sudoku, computer brain games — all causing me to short circuit — I finally got to the point where I accepted the “new me” (I hate that term) and accepted this cognitive dysfunction as the “new normal” (I hate that term even more).

Chemobrain is a force to be reckoned with. That’s a no-brainer, pardon the pun.

Then there’s reading. Or, rather, not reading.

Since chemotherapy, the thing that I loved to do so much throughout my life — reading — has no longer been pleasurable. I’ve been easily distracted, have lacked focus, tripped over sentences, and forgotten what I just read. Over the post-chemo years, I would have prefered a comic book version of many books. Sure, I could read what I needed to read for class, but no longer for the sheer joy of it.

Reading became joyless. My confidence in my reading intellect waned. Not reading for pleasure itself was a huge loss — until this year.

This year, I got tired of being tired of reading.

I would no longer allow chemobrain to hijack my literary joy.

I had been reading material for classes and really hunkered down and focused on the tasks at hand. This year, I found just a bit of joy reading the material and a thirst for more to read. I hung onto that feeling and tried reading for fun. I started with memoirs. I was enjoying non-fiction. I would download the books on my iPad mini and read them and, for some reason, I found my concentration to be stronger than it had been in years.

One late night I was hungry for fiction. I wondered, with excitement, about all the books I’ve always wanted to read. The choices were endless.

However, my mind kept returning to one book. I tried to dissuade myself. But in the end, I made my decision.

Leo Tolstoy’s War and Peace.

Yes, extreme reading should be an Olympic sport.

I was scared at the thought of reading this mammoth novel, especially given my shattered confidence in my brain’s ability to absorb material. But all I could think of was that I wasn’t being fair to myself to deprive myself of the ability to try reading this book.

Now that I’m 13 percent finished with War and Peace (but who’s counting?), I can say that it is truly wonderful and pleasurable! It has so many degrees of awesomeness. Sure, it’ll take me forever to finish it, but who cares? What’s the rush? Why rush time?

Chemobrain is definitely affecting my ability to remember some characters and details. (In my defense, War and Peace has, like, a gazillion of them.) But I’m not allowing my brain to intimidate me and hold me back from what I truly want to do, and that is to read more and read what I want. And reading this novel has boosted my confidence in my brain like nothing else has.

For years, I have fought the war against chemobrain. Now it’s time to accept who I am and enjoy the peace of getting lost in a great classic.

War and Peace

Do you suffer from chemobrain? If so, how do you handle it?

How would you describe chemobrain to someone not initiated into the world of chemotherapy?


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16 Responses to Chemobrain: War, Then Peace

  1. Idelle Davidson had this to say about that:

    Beth,

    What a wonderful article about chemo brain and how beautifully you write! I think we must be doppelgangers because your struggles are my struggles, right down to the same examples. Right after chemo, the only books I could read with joy were Harry Potter. That was nine years ago and I can say that my brain has gotten sharper—I read War and Peace too (but don’t ask me to tell you the characters’ names, cause I can’t remember them!). What I have found, and it sounds like you have too, is that “hunkering down” is THE remedy. What’s the alternative? We can avoid mental tasks but all that does is confirm our foggy brains as the “new normal” (and I HATE that term as much as you, I find it unbelievably INSULTING!). The answer is to struggle. Seriously. If learning something new takes ten times longer than it used to, then so be it. Do it. Move forward, don’t stop. Thank you Beth, for all that you do—and write about—on behalf of so many of us. I am a fan!

    xoxo
    Idelle

    • Beth L. Gainer had this to say about that:

      Idelle,

      Wow, we are like-minded spirits! You read War and Peace, too? Cool! Beyond cool. I love what you said, “The answer is to struggle.” Yes. So insightful. We do have to struggle to keep our brains in the best form possible. It’s amazing that all these years, I just let chemobrain rule me.

      No more.

      Thank you for all you do, and your terrific book, Your Brain After Chemo is amazing and is a staple on my bookshelf!

  2. Nancy's Point had this to say about that:

    Hi Beth,
    I really enjoyed this post. I had a real “light-bulb” kind of moment while reading it. I have been having trouble concentrating on reading since cancer, too, and I never really thought of chemobrain as being a possible reason why this is! Gosh, what does this say? It’s been quite a frustrating thing at times. Right now I’m merely working my way through a Grisham novel – nothing like War and Peace. That’s impressive! I appreciate the reminder that it doesn’t matter how long it takes to get through a book, any book. Who cares? I love that. There are no timetables here, well unless your taking a class or something. Read what you can, when you can. Another terrific post, Beth. Thank you.

    • Beth L. Gainer had this to say about that:

      Nancy,

      Thank you for your insightful comment. You know, I wonder how many studies on chemobrain included activities like reading. I have a hunch that many people have trouble with this activity after chemo.

      Interesting — and sad — that you have had the same problems with reading.

      Grisham novels are great. You are keeping your mind active, and that’s the main thing. In truth, it doesn’t matter what we read, as long as we try to read what we want to.

      I tend to be an impatient person, and I almost gave up on War and Peace several times! But I’m staying the course.

  3. Pingback: Weekly Round Up | Journeying Beyond Breast Cancer

  4. Cancer Curmudgeon had this to say about that:

    Yes, I miss reading and should force myself to get back to reading fiction (I’ve done OK with some non-fiction stuff).
    Oh yes, Google synced with Android, yes, cannot live without!

    • Beth L. Gainer had this to say about that:

      Cancer Curmudgeon:

      I sometimes wonder if non-fiction works easier on the brain after chemo than fiction, which sometimes has all these abstract themes and complex characters.

      Maybe one day you will get back to reading fiction. It’s worth a try!

      Thank you for reading and commenting! :)

  5. Beth L. Gainer had this to say about that:

    Thank you Journeying Beyond Breast Cancer for including me in this week’s roundup. I’m beyond honored!

  6. eileen@womaninthehat.com had this to say about that:

    Great post, Beth. Not only did you affirm those struggling with chemo brain, but you showed us practical ways to compensate. Personally, I’ve found that it’s improved a lot over time, but not made a full comeback. I too am grateful for technology for making it easier. I get through work much better than even a year ago, but now and then, I still get a complete fog that wipes out memory, like a computer that crashed. I also hate the term “new normal,” so I prefer to say I’ve made peace with my imperfections and leave it at that.

    • Beth L. Gainer had this to say about that:

      Eileen,

      I love your attitude. Making peace with one’s imperfections is a great way of looking at the aftereffects of cancer and its treatments.

      I know what you are talking about regarding the crashed computer analogy. That happens to me, too. So annoying.

      I’m glad you made peace with it. Thank you for your thoughtful comment.

  7. Lisa DeFerrari had this to say about that:

    Beth, thank you for sharing your insights about chemobrain and your very direct, practical approaches for dealing with it. I love that you’ve found a way to do something that’s important to you even though it’s not as easy before. Very inspiring post!

    • Beth L. Gainer had this to say about that:

      Lisa,

      Thank you for your kind comment. Months ago, I would have said that what I’m doing is insurmountable. For some reason, something within me changed — and I aimed high for a big goal, just to enjoy literature again and prove I was up to the challenge.

      Thank you for reading my post.

  8. Elizabeth had this to say about that:

    Great post, Beth. I am so glad you are reading again! I have had the same problem and it is so frustrating!

    • Beth L. Gainer had this to say about that:

      Elizabeth,

      I’m so glad I’m reading again, too! It’s amazing how many people have told me that they are having trouble reading since chemotherapy.

      Thank you for reading and commenting.

  9. karen sutherland had this to say about that:

    dear Beth,

    it’s taken a few days for me to pick up my cyber pen – so sorry I’m late to the conversation. but I just had to tell you I truly think you’ve got something there with your ideas about practical ways our brains can rewire and help us move forward. I was one of the lucky ones – never from day one lost my ability to concentrate on reading. for me it was the most awful frustration of grasping for a word – right on the cusp of my memory, but not being able to fully bring it forward, sometimes while writing, but mostly in conversation. I would get so upset – trying desperately to mine a synonym which added to my bewilderment and being royally pissed off. for years Hugh and I did the NYT’s crossword puzzles, but I didn’t even think of them for months after he died. then I started doing them again and was flabbergasted to find I REMEMBERED some of the more obscure words in a flash! now I do a CWP every day, and am feeling there is some connection that is helping me be more adept at choosing the perfect word I want to say or write. my thought patterns seem to be less static and more fluid, albeit improving much more slowly that I would wish. but I remember to be patient with myself when I recall trying to say a word that described a people that lived long ago in an icy, snowy, storm driven era. I struggled, I grappled, I spit out cuss words – I just could not find that one damned, perfect word. finally I blurted out, “Honey – you know! it’s a, a, it’s…it’s a FIERCE NORSE FIGHTER! Hugh turned to me and started laughing – I was trying to say, “VIKING”! we never forgot the hilarity of those 3 words, and never used the word, “Viking” ever again. it remained, much to our delight, Fierce Norse Fighter.

    I hope that you and all of the commenters who have had trouble reading find it getting more easy and enjoyable day by day. this was a wonderful post – you gave hope and inspiration to so many who have the same struggles, Beth. thank you!

    much love,

    Karen xoxo

    • Beth L. Gainer had this to say about that:

      Karen, do not worry; you are never late to any conversation, and I so value your loyal readership and comments.

      I am in awe of people who can do crossword puzzles. I never seem to think of the right words. I LOVE the story of when you blurted out Fierce Norse Fighter for Viking. It sounds like you have so many fond memories, and I’m so glad you eventually returned to your love of crossword puzzles.

      I think that’s it in a nutshell: returning to the things we love.

      Thank you for your insightful comment.

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