When Chemo Brain Follows You Home
by Beth Leibson
We sat on comfy sofas talking about fainting. Passing out was frightening, embarrassing, and seemingly inevitable. Someone was listing the various places we, as a cancer support group, had lost consciousness: the workplace, the schoolyard, on the way home from chemotherapy.
Something about that last one got to me. “On the way home from chemo?” I said. “That must have been really rough.”
With great kindness and patience, Jane turned to me. “That was you, Beth.” Oh, yeah. Now I remember.
Chemo brain. It really does exist. Researchers suggest it is intermingled with fatigue and difficulty sleeping (yes, I am writing this at 3 o’clock in the morning), anemia (I swear, I am taking my iron supplements), and depression (how could a cancer diagnosis be uplifting?). And while chemo brain is an interesting phenomenon to read about on the front page of the newspaper, it’s scary when it follows you home from the chemo suite.
As a freelance writer and single mother, I live in fear that my kind and understanding editors will find out how many “to do” lists, checklists, and inventories litter my life. Or that I’ll forget where I put those lists. Or forget which one – for some reason I label them all “List” – relates to which aspect of writing, shopping, or taking care of my two children. I’ve considered making a list of my lists but, well, I’m just not organized enough to find them all simultaneously nor confident enough to be sure that the process would help.
I’ve considered making a list of my lists but, well, I’m just not organized enough to find them all simultaneously.
I have trouble concentrating on more than one thing at a time. Which means that the apartment is plagued with half-completed projects: some of the dinner dishes are washed and dried while the cups and forks are still sitting on the table; the sheets and towels are folded and put away while the bed is strewn with newly laundered shirts and underwear. Not to mention the 20 minutes I spent the other day looking for the FedEx package I signed for while on the telephone. I generally try to avoid multi-tasking. But sometimes – when, for instance, an editor needs to discuss an assignment while a delivery person requires a signature simultaneously – it is unavoidable.
These days, I can’t just up and walk out of the apartment. First, I have to sit on my bed for a few minutes and stare into my tote bag. Do I have everything I will need to get through the day? Do I have my keys and a book to read on the subway? Have I remembered to put on both shoes and deodorant? And do my earrings match? (As a baldie, I go in for dangles to suggest that I am still a female.)
But chemo brain isn’t just about remembering various action steps. It can also compromise the ability to communicate. So I worry about losing all of my, oh, what are those words called, the ones for people, places, and things. Thus far, I seem to have retained my verbs, which is reassuring, if curious.
Equally odd, my fingers remember words better than my mouth thus far, so I type more clearly and precisely than I speak. Which is helpful professionally, though it does leave my children guessing which one is the thingamajig and which is the whatsit.
In an effort to combat word loss, I’ve gone back to crosswords, starting with the simpler ones and hoping to build up to more complex puzzles. I enjoy the challenge of piecing together the clues and filling in the little squares. I remember little tricks; for example, Ella Fitzgerald appears much more often than, say, Joni Mitchell. But these days, every blank space seems ominous rather than simply a testament to my lack of sports knowledge or entertainment lore. Each question left unanswered suggests frightening memory loss. I try to track my progress day to day, but can never quite recall whether I actually finished the previous crossword. Am I blocking the info or simply forgetting it?
Finally, I worry about the longevity of this brain deterioration. Will all my forgotten nouns arrive, gift-wrapped, a few months after I finish ingesting the dangerous chemicals that are saving my life? Will they drift back, one by one, in envelopes stamped “return to sender”? I find I am becoming more and more demanding. I want my life, my nouns, and my ability to perform multiple functions concurrently.
I would send an e-mail to my oncologist to ask him whether he thinks this hope is realistic, but I just can’t remember where I wrote down his e-mail address. Ah well, I guess I’ll know the answer soon enough.
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Beth Leibson is author of the book I’m Too Young to Have Breast Cancer (LifeLine Press, 2004).
This article was published in Coping® with Cancer magazine, January/February 2009.