Chemo Brain

Cancer-Induced Cognitive Impairment (a.k.a., “chemo brain”): Guides’ Stories

In a recent blog post, Darla Coss, Occupational Therapist, talked about cancer-induced cognitive impairment, also known as mild cognitive impairment, or “chemo brain,” (though people who have not undergone chemotherapy can face impairment, as well). She also shared with us how to find help for the condition. In this post, we offer personal stories told to us by Firefly Sisterhood Guides who have experienced the condition. In a coming post, we’ll share helpful strategies the women use to manage life with cognitive loss. As always, we want you to know that you’re not alone in what you may be experiencing!

“One of the hardest things was not being taken seriously. Others just didn’t understand.” Having recently started adjuvant therapy for breast cancer, Pam felt at a loss when she found herself confused and having great difficulty with multitasking, tracking conversations, and performing everyday routines, like following a recipe she had used for years. “I’d go to my computer to look something up, start typing, and completely forget what I was looking up. I’d do things like leave the water running and forget to turn it off.”

Not having heard of chemo brain, Pam was blindsided by her symptoms. In 2008, the year she was diagnosed, much less was known about the condition. Doctors tended to dismiss the memory loss as a given side effect of cancer treatment and advised patients just to wait it out and hope the problems decreased over time. This wasn’t good enough for Pam.

While a great deal more was known about chemo brain when Anna W. was diagnosed with breast cancer seven years later, she was also caught off guard by the effects. When she returned to work after her chemotherapy treatments, she was unable to perform to her or her boss’s expectations. Stumbling over her thoughts and words and staying on track with what she wanted to convey in meetings, making simple mistakes, and having sub-par client files returned back to her was devastating. “My quality team at work began pointing out my mistakes, and I was embarrassed, not being able to do what I previously could. And in my 2^nd job, working in customer service, I’d have people waiting in line for me as I stared at the computer and couldn’t follow along to complete a transaction.” Anna knew she had to seek help.

While Amy didn’t undergo chemotherapy for breast cancer, she, too, has felt the mental effects of a cancer diagnosis and treatment. “I started (hormone treatment) following radiation, and I noticed a gradual fogginess. I’ll be in the middle of a conversation and completely lose my train of thought.” It’s been over two years, and Amy continues to feel the fatigue of it all. Sleep does not always come easy for her, and when she’s tired or anxious, she notices the impairment more. While she’s glad her fogginess is fairly mild, Amy feels the annoyances of its effect.

“Chemo brain” was not a new term for Anna N. when she began experiencing cognitive issues. Experiencing a stroke years prior to her breast cancer diagnosis meant she had already endured the process of training her mind to re-learn basic functions. Still, when the loss of focus and memory, forgetfulness, and chronic tardiness resurfaced following her aggressive chemotherapy treatment, she thought, “Am I going crazy?”

“Personally, I think the incredible stress of the diagnosis itself causes a lot of this. Even at my doctor appointments early on, I had cognitive issues. I’d be listening to my doctor and not hear what was being said to me or remember anything,” says Anna. Extreme sickness from her cancer treatments only added to her challenges and forced her to take a year and a half off from the work she loved as a teacher. When asked how she felt during this time, Anna replied, “Grief and sadness. I grieved that I was no longer able to do my work and no longer able to do simple things like hold a conversation without forgetting midway what we were talking about.”

Pam, Anna W., Amy, and Anna N. faced, and continue to face in varying degrees, cancer-related cognitive delay. While frustrated and discouraged at times, the women sought help and discovered their own strategies to improve their lives. In Part 2 of our Guides’ stories, they will share some of what they have found to be helpful in the hopes that others dealing with cognitive issues will find support in their examples. Stay tuned!