Monday, November 15, 2010

After Chemotherapy for Breast Cancer, My World is Flat, Colorless

By Lisa Iovino-Lewis
Los Angeles County, CA
Guest Blogger

Although I seem vibrant, my entire life has changed because of chemo brain.  Three years ago, just before my 47th birthday, I was diagnosed with stage 3B ductal breast cancer. While going through 6 rounds of TAC (taxotere, adriamycin and cyclophosphamide) protocol, my brain took a journey I was not expecting.I was told about this possible side effect in my "chemo education" class my oncologist's office has you go through before starting treatment.  I don't think being forewarned served any purpose but to keep me from thinking I was crazy.

Working full time during treatment in the financial industry during one of the biggest financial crises our nation has seen was definitely a test of perseverance. I think it was around my 3rd or 4th round of chemo that I would start sentences and just stop talking because the words I was looking for weren't there.  Conversations then started to begin with,  "This chemo brain is difficult so please excuse me".  By the 5th and 6th rounds it had become significantly worse; forming whole sentences was becoming difficult and dealing with demanding people was incredibly frustrating.  As long as I had a task list and stuck to it I was okay.  When somebody needed something and wanted to add a task or disrupt my routine I would really lose it.

After my 6th round of chemo a lot of the symptoms started to diminish.  This took many months to feel close to normal again.  There is a lasting issue I think is important to talk about.  I was one of those people who love art and interior design.  From an explanation of an idea I could visualize everything in my head that someone was explaining.  I had memories of events that were like seeing color movies of my life in my head.  Always thinking and creating...I loved this part of my mind.  It was what made me who I was.  I say was because it is a chore to recall anything now and even when I do it is a flat black and white image that allows me to still remember, but not feel.  Explaining this is really difficult.  My mind no longer wonders any more.  It is very static.  I don't feel like my new experiences stay with me either.  Grasping for words is much less often, but still happens.  My family tries to convince me it is because of O L D and not the residual effects of chemo...I know better.

I was one of those people who remembered every detail of my life...and was creating constantly..  I would give almost anything to have that back.  Just not my life.  So now life is a new norm.

(Other treatments/procedures: mastectomy with concurrent reconstruction, radiation, taking tamoxifen since June 08).

"I would rather be ashes than dust! I would rather that my spark should burn out in a brilliant blaze than it should be stifled by dry-rot. I would rather be a superb meteor, every atom of me in magnificent glow, than a sleepy and permanent planet. The function of man is to live, not to exist. I shall not waste my days trying to prolong them. I shall use my time." -- Jack London 

4 comments:

  1. I am glad you are talking about this. My friend had no idea about the "fog" that occurs. We need support for the effects during and after treatment in addition to preventative.

    ReplyDelete
  2. Lori, thanks for your comment. You're right. Patients do need support on this issue, something I've been advocating for two years now. Oncologists need to disclose this potential side effect of chemotherapy at the very first patient-doctor visit.

    ReplyDelete
  3. Thanks for talking about feelings after Cancer. I know I should be happy Iam alive but often I feel lost and sad. What is wrong with me.

    ReplyDelete
  4. You're not alone. Many people feel the same way after a diagnosis of cancer. Have you tried joining a survivors' support group? The Cancer Support Community (formerly the Wellness Community) can help (http://www.thewellnesscommunity.org/) and I also would like to recommend Healing Odyssey (www.healingodyssey.org), a nonprofit group that holds weekend retreats for women survivors.

    Best of luck to you.

    ReplyDelete