And This Is Chemo Brain. We’re Not Making It Up!

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BY LIZZY SMITH

Just a week ago, someone asked me what chemo brain was like. Here’s an example. I’m in my car purchasing drinks for my daughters at the drive-thru at Beans & Brew. The barista tells me the total, I get the money out of my handbag and then I pick up my phone and start calling my best friend.

“Mom! You haven’t paid yet. Are you kidding?” my 14-year old daughter, Morgan, said.

I looked at her confused, then looked at my hand and there it was- the money. I forgot to pay.

Just minutes later, my nine-year old stops me as I’m driving home. “Mom, we are supposed to be going to the orthodontist!”

Oh, yes, why am I driving home?

We all laugh at crazy mom. Hahahaha.

There are conversations I’ve had with people that I don’t remember. I supposedly promise my children I’ll bring them lunch to school. I don’t remember that either. I put things on my phone calendar but I often forget to look at my calendar.

It’s not so awful that I can’t drive, travel, or enjoy life. But I’ve long stopped trying to hide the fact that I fish for names, can’t remember words, and show up for events on the wrong day. It’s just one more thing to blame on cancer. “Sorry, I have chemo brain!” I’m apt to say. And it’s not like I’m making it up. It’s true. It’s real. And it’s sometimes really annoying. Oh well, I’m alive!

But chemo brain isn’t simply forgetfulness. Heck, we all forget things, even if we don’t have cancer, dementia or Alzheimer’s. But it’s a fuzzy feeling that is often exacerbated by fatigue (thanks, myeloma and meds!). It’s not feeling sharp. When my daughter talks to me too fast and then someone else starts talking to me at the same time, I just can’t do it. I want to put my hands over my ears and scream “STOP!” I feel like 300 people are screaming at me at the same time. Sometimes even trying to remember things takes more energy than I have so I simply don’t. Some days (not all!), I have to really concentrate. Like my bedtime routine takes forever– take meds, put jammies on, wash face, put on lots of essential oils, turn on my electric heating pad, put my children to bed, read to my youngest child, brush teeth, get lunches ready in the morning… I finally made a list so that when chemo brain rages, I don’t have to “think,” I can just “do.” Just go down my trusty To Do list and give my cognitive thinking skills a rest.

So today when I stumble on an article in OncLive (Chemobrain—It’s Real, It’s Complex, and the Science Is Still Evolving), I am relieved. Just in case someone doubts me, I can send them a link and say I’m not making this up!

Apparently, chemo brain is most intense during treatment. However, since many of us myeloma survivors are in long-term treatment, we may not get the “benefit” of going back to baseline of how we were before illness.

But according to the study, some 30-percent of cancer patients also experience other emotional ailments associated with chemo brain, including depression, anxiety and distress during treatment. 30 to 60-percent also have insomnia, and poor concentration and memory.

No kidding! We cancer patients have been saying this all along. Now we have validation.

I found this example in the article very interesting:

In an early study exploring functional changes in the brain due to chemotherapy, [the researcher] asked twin, 60-year-old females, one of whom had been treated with chemotherapy, to perform a series of tasks while undergoing MRI. The resulting images documented areas of hyperactivity in the chemotherapy-treated twin relative to the untreated twin, which the authors interpreted as areas of deficits due to chemotherapy.Findings of several functional brain imaging studies have been reviewed and relative to “controls,” individuals treated with chemotherapy have been found to exhibit functional differences, including both areas of hyper- and hypoactivity during tasks, as well as differences in brain activity while the brain is at rest.In addition, structural differences have been noted as well. [Researchers] compared brain images of women with breast cancer, some of whom received chemotherapy and some did not, and found decreases in volume and density of both white and grey matter in the group treated with chemotherapy. Chemotherapy-related reductions in grey matter have also been correlated with impairment in cognitive abilities.

So what is someone with chemo brain to do? If you’re looking for a magic pill, it doesn’t exist. Exercise and socialization helps. For me, I write myself a lot of notes and try to do better with looking at my calendar many times a day. I tell people I have chemo brain and that’s why I forget stuff. And, well, I move forward in life, enjoy and make apologies when I mess up.

Here’s what the article says about help:

Healthcare professionals are urged to validate patient concerns, provide education, and to assess for contributing factors, including medications, depression, anxiety, pain, fatigue, substance abuse, and sleep disturbance. Although most patients eventually return to pretreatment baseline, a subset report significant impairment in quality of life, independence, and self-confidence. One of the most important things friends, family and caregivers can do is to provide emotional support by listening to the patient’s concerns and validating the existence of chemobrain. It is common for families, coworkers, and friends (and sometimes even healthcare professionals) to not understand that the emotional, physical, or cognitive effects of cancer treatment may linger after treatment has ended.

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About Author

Lizzy

Lizzy Smith was diagnosed with myeloma in 2012 at age 44. Within days, she left her job, ended her marriage, moved, and entered treatment. "To the extent I'm able, I want to prove that despite life's biggest challenges, it is possible to survive and come out stronger than ever," she says.

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