The Chemo Brain Struggle Continues

I have been on chemotherapy for two years and then immunotherapy for the next two years (still on immunotherapy).  BOTH list cognitive issues as side effects and I am here to tell you - IT IS NO JOKE.

Chemo brain is defined by the American Cancer Society as:

• Forgetting things that they usually have no trouble recalling (memory lapses)
• Trouble concentrating (they can’t focus on what they’re doing, have a short attention span, may “space out”)
• Trouble remembering details like names, dates, and sometimes larger events
• Trouble multi-tasking, like answering the phone while cooking, without losing track of one task (they’re less able to do more than one thing at a time)
• Taking longer to finish things (disorganized, slower thinking and processing)
• Trouble remembering common words (unable to find the right words to finish a sentence)¹

I have a daily conversation with someone who says to me, "I told you that." I have NO idea what they are talking about. I go into the kitchen and by the time I get there, I have NO idea what I went in there for. My family and friends always make references to something we did together and I have no recollection.

Finding ways to manage my chemo brain

I have had to reorganize my life in such a way to help me from forgetting everything....and I mean everything.  I keep track of all my appointments on my Gmail Calendar on my phone so it is backed up online for the many times I deleted something and forgot about it.  I have a 5" x 8" planner where I write everything else down. Specific days when prescriptions need to be refilled, when to make appointments, and, if I am cooking that day, it will list what I'm cooking and what ingredients I need.

On television, there is nothing about chemo brain, but many television shows depict characters with dementia. For me, chemo brain almost seems like a mild case of dementia. A good example is that at the beginning of the month, I separate my money by the bills I have to pay. I have notes in my planner, otherwise, I would have NO idea why this pile of cash is wrapped separately from all my other cash.

Coping with a little bit of humor

On a daily basis, luckily, my family and I approach my diminishing cognitive skills with humor. At first, it made me angry and then I realized there really isn't much I can do about it so why not go with the flow. As a mom of 7, I write down everything my kids tell me (they are all grown) to remember what they are doing on a daily basis.

On a final note, a good example was last night. My daughter purchased a Wendy's Frosty for me to have as a late night snack. It was delicious. Two hours later I had a thought, "Oh boy, I have a Frosty in there." I went to the freezer and there wasn't one. I yelled "who ate my Frosty?" and the answers coming from the other room with laughter were, "YOU ALREADY ATE IT, MOM!!"

Editor’s Note: We are extremely saddened to say that on January 28, 2020, Jennifer Toth passed away. Jennifer was a passionate advocate for the Lung Cancer community. She will be deeply missed.