My brain on cancer (confessions of a recent non-reader)

July 5th, 2013 § 36 comments

IMG_6280Something happened to my brain when I heard the words “Your breast cancer has metastasized.” Suddenly, irreparably, it became a sieve. Surgical menopause without the option of hormone replacement seven years ago started the process. But mental anguish and immediate, lifelong chemotherapy  been major contributors to my Swiss cheese mind.

I used to read a lot. People think of me as a reader. I am sorry to say I’ve become a fraud.

I love to support authors and their books. That has not changed. It never will.

But when it comes to what I’m actually reading (and finishing)… well, I have a confession to make: it’s not much in the past nine months.

My mind jumps all over the place. It simultaneously wants quiet but is restless. It craves nothingness and distraction. It is hard for me to sustain long conversations; I find them exhausting now. This is one reason Twitter has remained such a wonderful social medium for me; it is defined by short chats that can be stopped and started at will.

When it comes to reading, however, I am having trouble. I hope this ability will return. I spend my focused time writing when I can. Even then, as readers here know, I almost always write brief pieces, expressing thoughts in as few words as possible.

When I was first diagnosed with breast cancer and underwent chemo in 2007 I didn’t read either. I hear from so many people that this is how they felt, too. Those who are newly-diagnosed think they will spend their time catching up on books they want to read during chemotherapy or after surgery. It just rarely happens: either your brain is in a fog or you feel rotten. When you feel good, you want to get out and do things with your family and/or friends.

My current stack of  “am reading” and “to be read” is shown in the photo above: books by Dani Shapiro (am reading), Kate Atkinson, Rosie Schaap, and Meg Wolitzer (to be read). I’ve cleared out shelves and shelves of books that I know I won’t get to and given these treasures away. It really made me sad to see so many books there, mocking my isolation: tangible reminders of things I will leave undone. And yet, I saved a bookcase or two of books I still want to read. I won’t give up hope completely.

So now I turn it to you, readers: Do you go through phases of reading? What have you noticed about your reading habits when you had bad news? Health issues? Medical treatment of some kind?

On the flip side, what happened to your reading habits after happy events? I didn’t read after the birth of each of my children: middle of the night feedings were accompanied by nodding off, not turning pages of a book. I’m not an audio book person, I should specify. I know how wonderful this format can be, it just doesn’t work for me. I either fall asleep (chemo fatigue and the sound of someone reading to me… isn’t that how we prime our children for bedtime, after all?) or my mind does its trademark wandering and I have to keep rewinding the story.

The beautiful thing about a book is that it endures. It will wait for you. Like a good friend, when you are finally ready, it will share itself with you.

 

 

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§ 36 Responses to My brain on cancer (confessions of a recent non-reader)"

  • Gail Godwin. A brilliant writer.

  • Michele says:

    I’ve never had cancer (lucky me), but I’ve gone through two phases of not reading. The first was when I became increasingly nearsighted in my 40s and, as is the custom, tried to pretend I didn’t need glasses. When I finally ended my denial and got a pair after a couple of years, I returned to reading. So, first question, is the chemo affecting your vision?

    I’m in the second phase right now. I read so much for work and my mind is so scattered for reasons to do with family that it takes me an eternity to finish a book. I’ve renewed two library books twice now.

    I doubt that this is helpful, but I wanted to respond. And for heaven’s sake don’t kick yourself around about it!

  • Bernadette says:

    I couldnt read long stories when i was in chemo. I forget what happened and have to go back two chapters to catch on. Finally, i confined myself to reading short stories that can be finished in one sitting.

  • Susan says:

    I’m a reader and have devoured books since I learned to read in kindergarten. Amazon came at least twice a week and I went to the library at least once a week. After I was diagnosed, I stopped reading completely.

    My grandmother was very worried that I wasn’t reading. After I finished treatment she went to a garage sale and bought a bunch of Danielle Steele novels and sent them with a note saying I read these in high school and thought it might be a good starting point to get back into reading – easy reading and lighthearted stories.

    The books sat around for months. Finally one afternoon I felt like reading. I picked a book at random and starting reading without looking at the description. The book was about a woman lawyer with a child and in a marriage she wasn’t sure about – blah blah blah. After the set up she goes in the shower. “Oh no, I feel a lump”. Sure enough it was a Danielle Steele novel about breast cancer. I literally screamed. I couldn’t believe it.

    I’m reading again now but I’m weird about it. I have no qualms about skipping to the end if I’m not entertained. I NEVER used to do that.

  • AmyG35 says:

    Lisa, though we’ve never met, I think of you every day. I think of you in my little garden or when I am giving my cat her monthly dose of flea meds (wag nag, I love it!). The reading question is an interesting one because we all probably think we are the only ones who have hit a “snag” and everyone else is reading like crazy. For me, when I am not feeling well, I don’t read books; it is too tiring. Maybe some magazine articles or poetry. During the school year, #dayjob and required reading keep me from reading books at my usual pace. Now, on summer vacation and with children long gone, I read for a good chunk of the day, on my deck as often as weather permits. It is a wonderful gift that I truly appreciate! I realize there will always be more books to read than there is time to read them, so I try to pick books of interest and merit. Finally, sometimes a good middle grade or YA novel fits the bill. UThe are usually a little shorter to read and there are many excellent books out there. Try The Van Gogh Cafe by Cynthia Rylant, one of my all time favorites. Love and good wishes to you!
    ~Amy

    • A Friend says:

      I second the recommendation of switching to middle grade or YA novels. At times when I have been sick/overwhelmed/recovering/dosed up/exhausted I have found them to fit the bill. At first felt stupid since, would never have otherwise considered reading these. But in fact some these days are quite good and always a nice escape, without having really to think or concentrate, if you know what I mean.

      • Lisa Bonchek Adams says:

        One of the few books I actually have finished in the last six months was Wonder… I loved it. I agree, they are a great option.

  • Allison Lynn says:

    Really interesting, and moving, to read this. Though I’ve fortunately never had to deal with cancer of my own, metastasized or otherwise, I’m often frustrated that when hard times hit — the times when I assume reading will be my salve — I, too, can’t concentrate on books. Happy events, though, send me into a reading frenzy.

    I wonder if with bad news/health issues, I worry about taking my eyes off the issue for even a moment. That sense that when my attention is diverted, things will get worse? Or it may just be the heaviness of bad news/situations. I’ve thought about this quite a bit, though your post sums it all up so much better than I’ve managed in my own head.

  • Jane says:

    I discovered long ago that what I read varied along with how I felt, physically or otherwise. I am primarily a reader of nonfiction and mystery/suspense (Mankell, Furst, Le Carre, Steve Hamilton, Daniel Silva). The Civil and Revolutionary Wars are my main nonfiction categories, although I recently finished the “Midwife” trilogy on which the “Call the Midwife” PBS series is based. When I pick up a Woman’s Day, I know there is a problem. A few years ago I had a severe drug interaction, which left me unable to read. My first comment as I felt better was , “I can read!” My suggestion is to take a break. The YA suggestion is perfect. Large print books also go down more easily when your brain is not quite “with it” and the titles often fit perfectly with your needs. A trick I learned recently was using audible books along with the print copy. Just follow along as you listen. It makes a tremendous difference for me when my concentration is not quite all there. I’ve lately discovered to my amazement that listening to music (classical for me) when I read focuses me more than anything else (and relaxes my brain). Just a few suggestions. You know, I bet that petting Lucy while you read would also be great!

  • marcinca says:

    I was an avid reader and that changed with chemo. One of the funny things about that is that I was so disturbed by chemo brain changes I bought the book “Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus”. I started the book, ( insightful and helpful), BUT I kept forgetting I was reading it!! I’d read a chapter, put it down somewhere, then find it days or weeks or months later, and I’d be really surprised and think, “Oh yeah! I’m reading this!!” This went on for a year!! It took me a year to read “Your Brain After Chemo”, bec my brain after chemo kept forgetting I was reading it. LOL. And of course, I didn’t remember much of what I read.

    I still need to remind myself to leave anything I am reading, and want to finish, out in the open and visible, to remind me that I’m reading it. :)

    When medical issues are difficult….I reach for a magazine with big beautiful pictures…like an English Country magazine….I don’t read the words, or even try, just wanna see something beautiful. It can calm that restless, agitated, stressed state, for a few min. If med things are really bad, I can’t even do that.

  • Linda says:

    When I am stressed, physically or mentally or emotionally, I actually find I read more. It is a form of (healthy I think, for me at least) escapism. For the period of time I inhabit a book, I am buffered from the challenges of my real world. I keep a reading log and can tell a lot about my life by looking at how many titles I have read in a given month.

  • joanne firth says:

    Oh Lisa. This touched me so deeply. I feel for you because you are so entwined in the world of books and writers. This must have been beyond difficut to write. I have not been able to read either. I am not sure why. I have books. My Kindle is loaded with books I have purchased, yet I can not read them.

    Please don’t give up, perhaps one day, you will pick up a book again and get wonderfully lost and absorbed and read. I’m waiting for that day myself. My mind is so distracted that I can’t sit for more than a few minutes without getting up to go “do something”.

    In the meantime, please don’t feel bad. Continue to support your favorite authors and thank you for sharing this.

  • Laura says:

    Perhaps audiobooks might be something to try?

    Just because you can’t read as much doesn’t mean you don’t love books. :)

  • nancyspointn says:

    Hi Lisa,
    I definitely qualify as a sporadic reader. I go through phases. When I was undergoing chemotherapy, I actually did read quite a bit. It was a wonderful diversion for me and luckily I could concentrate pretty well, not all of the time of course, but enough so that I did finish quite a few books. It’s sort of odd perhaps, that now I often find myself being easily distracted. I’m not sure why this is. Often times it’s hard for me to concentrate. The wonderful thing about a book, though is just as you said, it’ll wait for you – just like an old friend – it waits til you’re ready. Nice post. Thank you.

  • Jennt28 says:

    So many of us in the same situation with reading!

    Like you, I thought I was alone in this falling out with the fictional printed word. Your piece has made me think about the chemo suite though. And you know, I don’t recall seeing a single person over the whole year I was there reading a book.

    There were no books sitting on the chemo chair tables. No-one sitting in the waiting room was reading.

    Like you, I have started reading but, where I used to read a good book in a sitting, I now have a “pile” of started but not finished books on my Kindle. I keep going back to them in the hopes I will have somehow found my reading passion again – but not so far…

    Hugs from Jenn

    • Rebecca says:

      Jenn’s comment reminds me of another one of Lisa’s posts. The one about “If these walls could talk” or something like that. It was about the chairs at the chemo place. I hope Lisa remembers what I am referring to. It’s been a while since I read it. There is a story there Jenn, and you just touched on it.

    • Nina says:

      What an interesting observation about there being no books on the tables and not seeing anyone reading.

      Lisa, I am with you on audio books. I just can’t focus on them and I don’t know if I can really understand what’s happening in the story. I think I’m more of a visual learner type.

  • Carla says:

    During a very dark season of my life I went a year without reading.
    No books. No magazines. No newspapers. Nothing.
    This, from someone whose idea of a perfect date night had been going to the bookstore. Who had stacks of “in progress” books by her nightstand. Who always had a running wish list of books.
    I just went with it.
    Looking back, my energies were needed elsewhere. Grieving. Keening. Hiding. Dealing with the chaos.
    The one day my husband gave me a card. Inside was a little gift card to our local bookstore. He had handwritten one word, “Go.”
    And I did.
    My love affair with reading returned.
    But I’m okay with the thought that this stand-off may someday repeat. And that it someday may not be temporary.
    I trust that I intuitively know and am led to know what is best for me in certain seasons. And I see that in you as well, Lisa. You have spot-on self awareness and that is key. You are living out what to hold on to and what to cast away, FOR THIS MOMENT IN TIME.
    Thank you for sharing.

  • Brenda Hatton says:

    I used to read every night for at least an hour. Love books! Since I started chemo. NOT! One of my biggest frustrations!

  • Ever since being diagnosed with chronic fatigue syndrome in 1989, I have had trouble reading. I can’t remember what I’ve read. I read a lot of articles, but not many books. If I pick up a book and it is tightly paragraphed, I don’t even try. In my breast cancer book, I used short paragraphs, short poems, extra space, etc., so it would be accessible to people undergoing emotional and physical stress. And at least I can read it!

    I have had the upcoming eBook done over several times for the same reason. It should be ready in a month. I want to do some free days on Amazon and I’ll try to let people know.

  • Sherry Siegel says:

    Hello, Lisa,
    I’m another one of your avid blog & Twitter followers you don’t know, but who wishes you and your family the very best.

    I don’t think I finished a single book in the year after my father passed away.

    For anyone who has stopped reading because of health or family issues, but thinks she may be ready to try again, I would like to suggest “Jim the Boy” by Tony Earley. It is a small, simple, quiet book with a big heart.

    Thank you for all that you share with us,
    Sherry Siegel

  • Lucie Van der Veer says:

    Lisa – find your posts and twitter so meaningful. Thanks. I am an avid reader. While I haven’t had cancer, I found the same inability to read during grief. Following the death of both my parents and then a very dear friend, I would look at the page and nothing. Or I would think I was reading, but after a number of pages, I had no idea of what I had just read. Time has healed my grief and I have gotten back to the joy of reading. I wish the same for you – take care.

  • 3xCancerChick says:

    I can definitely relate. After three different primary cancer diagnoses since 1999, I have found my reading, or might be better to say my ability to concentrate has definitely changed. I think the amount of reading I do is about the same or might be slightly more at times but the type of reading has definitely changed. I’m always reading something but now it is usually short pieces like online news articles, journal studies or blog posts. With my 1st and 2nd cancer diagnosis I read a lot about my cancers, after this last cancer, I barely looked up any info but I still read a lot of cancer and health related articles to post up on Twitter and help do research on resources for folks who are newly diagnosed. When I was getting chemo, no books for me because I was too busy Zzzzzzzzz-ing. During good times, my type of reading is the same…short but sweet. I do find now I have difficulty trying to read an actual book cover to cover, no matter what the subject is about. I also find, that I just can’t get into audio books, I tune those out and end up concentrating on something else or want to fall asleep. I have so many books I have tried to start reading over the years that are now sitting in a box. It wasn’t because the books weren’t interesting, I just can’t concentrate long enough to allow myself to let go and get lost in the stories. I find I also have the same problem with tv shows and movies, I find that I often have to pause a show or movie because I just can’t concentrate long enough to watch it straight through to the end. I do find it frustrating that at one time I would always be reading a book of some sort and now I read none, just another thing to add to the list that cancer has affected. I used to spend hours at the bookstore and would often come home with an armful of books. I have a very diverse home library, lots of books on psychology, art and business which I studied in undergrad and graduate school, books on Chinese which I studied for a number of years too, to things like travel, cultures, history, politics, mythology and mystery novels which I read because it was fun or feed my inner geeky soul. I’ve always maintained if I could figure out how to make money at it, I would become a professional student because I always loved to read and learn. Unfortunately, I don’t go to bookstores much now and I really don’t bother buying books anymore because I know I will probably not finish them. I now have the attention span of a gnat. I know the chemo definitely contributed to my “gnat like attention span” but also the fact that I was misdiagnosed for 8 years prior to my 2nd cancer diagnosis also had a lot to do with my concentration abilities going down the tube. For many years I was chronically malnourished to the point it really messed up my metabolism and I became hypothyroid and thyroid problems definitely mess with the ability to concentrate. I also think the fact that it looks like I have a genetic syndrome where it is not a matter of “if” but “when” I will get more cancer and I don’t want to get too engrossed with any one thing for too long for fear I might miss out on something. I know that sounds silly but I missed out on so much during those 8 years I was misdiagnosed because I was in physical pain most of the time and it was often difficult for me to leave my home. The good thing to come out of this I guess, is I am creating art again. I may not be able to allow myself to get lost in books or movies, but I find I can escape for awhile when I am playing with my paints. I don’t aspire to be some great artist, it is just my own personal therapy. I’m still a proud geek that reads a lot, I just don’t read long books now. But like you said, books will wait and hopefully one day I can revisit them and give them my full attention. :-)

  • Lisa, this topic fascinated me today. Thank you for bringing it up.

    I just had my first chemo session on July 3 (carboplatin and taxol) and will be continue with a chemo-radiation-chemo regime through January 2014 (for serious carcinoma of the uterus).

    And I admit, I have so far envisioned myself reading and also book-reviewing during this time period- I’m an avid reader and also a writer (though I don’t expect to begin writing a new book during this period, even I knew that was unlikely!)

    I wonder now what will actually come to pass. I so want the comfort of losing myself in novels- I read contemporary novels continuously, and if that’s something else cancer takes away from me I will be so disappointed. But Lisa, I hear what you are saying, too, from your experience.

    I wonder if it’s possible to set aside, on good chemo/radiation days, some quiet hours just to try…? To ease the brain into the story? Or am I just in denial here? Maybe one thing different here is that our daughter is college age (soon studying abroad this summer after two months home), and my husband and I are pretty quiet stay-at-home types, so maybe the context is somewhat more open for reading. I guess I will find out!

  • Mary says:

    I am the same. I can’t read anymore since my Stage IV MBC diagnosis. I wish I could. I love to read and have always been an avid reader. I continue to try and once in awhile a good book will grab me.

    I wish you well every single day, Lisa. Keep writing and sharing your thoughtful words.

  • Beth Falk says:

    I am almost two years out from treatment for colorectal cancer. This post rings true for me, sadly. My brain is never quite running at full capacity, and my powers of concentration and retention have diminished. It breaks my heart to see my stacks of unread books, lists of ideas that I can’t quite get to…all of it so different from my pre-cancer self. Thanks for this, Lisa – it helps to know it happens to other people.

  • Ingrid says:

    Reading has always been my escape from the present. I think anything overused or relied on can be an addiction and, at times, I believe my addiction is reading. However, after my cancer diagnosis, I had trouble focusing on most things. Initially, I was self absorbed with mental thoughts and anguish. Later, having a new a sense of priority in my life, I abstained from reading as I didn’t want to waste time on something that I couldn’t leave my imprint on. Now that I’ve established a “new normal”, I’m reading again. I believe that my ability to give time and attention to things depends on my current perspective and energy level.

  • SE says:

    I do not remember learning to read; I am told that I picked up reading while on my grandfather’s lap as he read the paper. (“Papa” died six months after my third birthday.) For the next 70 years, reading entertained and informed me until I began chemotherapy and radiation for cancer two years ago. I found that I could not follow a train of thought for an entire paragraph, and reading over and over did not help. I turned to old favorites; Jane Austen for example, the E. F. Benson Lucia series, or favorite poetry in small doses. The familiar passages soothed and comforted me and distracted me from the mental and physical pains and discomforts of treatment. I could put them down and resume reading without losing my sense of continuity.

    My comprehension and retention have not returned to pre-cancer treatment levels–yet another loss. Nor do audio books work for me.

    Your blog has helped me in many ways, not least among them this post. I am so sorry cancer has invaded your life; you have my understanding and sympathy.

  • Bella says:

    I had a few friends who asked me to talk about ALL the books I must have read while home for 4 months during my cancer treatment.

    I could barely keep track of what Netflix movie I had already dozed through, let alone read a book.

    As my attention span grew stronger, I was able to return to reading and I chose some easier, lighter fair to start. I was so proud when I was able to finish Michael Chabon’s Telegraph Ave. which required a lot of effort and much backtracking.

    My focus isn’t as good as it was BEFORE. I accept that while my head isn’t as sharp, my heart is ever so much larger.

  • s.e. says:

    I have never personally been diagnosed with cancer but I have gone from being an avid all the time reader to days where besides the odd thing on my computer screen I don’t read at all. I echo the person who talks about not reading during a dark time in their life. Death, illness, addiction, disability, suicide and financial hardship have all affected my immediate family in the last 12 months. I not very often interested the sweet attraction of escape into fiction. I feel that for me if day to day reality is challenging, I need to do things that help getting through each day instead of just trying to escape from it.

  • Luke Allnutt says:

    I really enjoyed this post. I am going through chemo for stage 3 colon cancer at the moment — and reading a fair bit. Quite a few cancer books but also novels and a bit of non-fiction.

    When I have found reading difficult physically it’s when I’m on steroids and I’m jumping around like a kid with ADD on a video game marathon.. But for the first two months after diagnosis, I did find reading very difficult from a psychological perspective.

    Reading was my old world, my world before cancer. Beyond me, my treatment, my threatened life, for a while nothing else existed — and I didn’t want it to exist. The outside world be damned! Reading and books, movies, were things out of reach, like watching other people’s lives flash by from a speeding train. They even made me angry because they weren’t about me, they didn’t speak to me about what I was going through. I think partly they made me angry because they did represent my old life, a life I desperately wanted back.

    As Carla said:

    “I just went with it. Looking back, my energies were needed elsewhere. Grieving. Keening. Hiding. Dealing with the chaos. The one day my husband gave me a card. Inside was a little gift card to our local bookstore. He had handwritten one word, “Go.” And I did.”

    That’s exactly how I felt. (And what a lovely and beautiful gift from Carla’s husband.

    Thankfully, I have got my reading mo-jo back somewhat and am enjoying it. I imagine it will come in waves with my treatment. But for now, I’m reading, and that’s good.

  • Amanda says:

    I love to read but having MBC it varies how voraciously I read. I find now (2yeara into diagnosis) that I am fine reading again most of the time – and I did love Kate Atkinson’s Life after Life. I still try to get to my book group and if I can’t I read the books anyway. I started reading more ‘serious’ books as opposed to airport novels after my first child was born in the hope of gaining more intellectual stimulation. Now if I am feeling low I tend to read more uplifting books – not novels as such but books that make my heart sing. They are always on my bedside table. Usually I get back into a novel pretty quickly but I often know when my soul needs something different.

  • Shelli says:

    I too feel as if my brain is Swiss cheese. I thought I could catch up on my kindle while undergoing extensive chemo for OVCA. Never happened, although I did find a few humor books that had chapters of just 3-4 pages that I could digest. I am finally starting to read more, 4 months after completing chemo.

    It’s difficult as a writer and book lover to accept that my brain cannot process words as it used to. You did a wonderful job of expressing exactly how I feel. Thank you.

  • Leah says:

    Like most of the posters here I’ve loved to read all my life. Two years ago I was diagnosed with stage 3 ovarian cancer, which has since progressed to stage 4. Am on a continuous regimen of chemo to keep things stable/buy some time. All during this time, I’ve continued to love reading. I’ve found, like some of you have mentioned, that YA novels are good for me. I still enjoy good historical novels, mysteries, and easy-read contemporary fiction. Magazines a good … I enjoy looking at the pictures. I may forget that I’ve read a certain book two weeks after I’ve read it, but I’m still hanging in there! it’s a great escape for me. I can check out for awhile and forget about what I’m dealing with.

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