The Road Back from Chemo Brain: One Woman’s Journey

Eight years after completing chemotherapy, Maya Gottfried started on another path to healing.

Maya Gottfried
Maya Gottfried says she didn’t know she could get help for her chemo brain symptoms. Photo Credit: Jessica Mahady

The 44-year-old writer from Beacon, New York, was successfully treated for stage III colorectal cancer at Memorial Sloan Kettering in 2008. In the years following an intensive course of chemotherapy, her body bounced back, but her memory was slow to catch up.

Maya noticed herself forgetting “little things that we do on a daily basis,” she says. She’d go out to run errands and forget to do half of them. She’d overlook tasks in her morning routine. She couldn’t remember to take her supplements. You wouldn’t have known it just by talking with her, but she says she was struggling.

Those short-term memory troubles are hallmarks of what many refer to as “chemo brain,” the cognitive changes that most people experience during or after treatment.

A Complex Condition

Chemo brain is tricky to diagnose because many of its symptoms — trouble concentrating and fatigue, to name two — mimic other conditions, like anxiety, insomnia, menopause, or simply normal aging. Doctors try to rule out other problems first.

“These issues tend to influence the same areas of cognitive function, memory, attention, and processing speed,” says Tim Ahles, a behavioral psychologist at MSK.

Chemotherapy contains chemicals that work to fight cancer, but since it courses throughout the body, it can affect healthy cells as well. That said, nobody knows why exactly chemo brain happens — and even the name itself is a bit of a misnomer.

“Everyone calls it chemo brain, but it’s probably a much more complex combination of surgery, chemo, radiation, and endocrine therapy all mixed together in one person,” Dr. Ahles says.

Finding Support

Maya had heard of chemo brain but didn’t know if there were any steps she could take to help her grapple with it.

“I didn’t realize there was support,” she says. “I told my nurse I was having issues, and she told me about the therapy that was available. I thought it was a great idea.”

Her nurse referred her to Grace Chen, an occupational therapist at MSK’s Sillerman Center for Rehabilitation. Occupational therapists help patients get back to the everyday tasks that they may have trouble with after cancer.

Occupational therapy for chemo brain is similar to physical therapy, except that therapists teach mental exercises to strengthen the mind instead of physical exercises to strengthen the body. Depending on the severity of the symptoms, Ms. Chen sees her patients anywhere from four to twelve weeks, asking them to bring in projects, schoolwork, and other items from their everyday life.

“We’re individualizing the therapy to each person,” she says.

Ms. Chen showed Maya strategies that would help with her memory, time management, and organization. They met once a week for five weeks, but as is the case with physical therapy, Maya spent a lot of time practicing her new skills outside of her appointments.

“She taught me some really great tools, like how to organize a to-do list, visualize things so I would be more likely to remember them, and set up stations in my house so that a particular place would trigger remembering what I had to do there,” Maya recalls.

Tools That Help Bridge the Gap

While many patients do not have lingering effects after completing chemotherapy, Maya’s case wasn’t unusual, Ms. Chen says. “Sometimes patients may not notice some of the effects right away.”

Most patients find that in time, their brainpower returns to its baseline normal, but experts estimate that 25 to 30 percent experience cognitive problems for one to two years or more after treatment ends. Maya considers herself “a little foggier” than she was before her cancer, but now she’s armed with tools that she says “have really helped to bridge the gap.”

She encourages other cancer patients to be gentle with themselves if they go through chemo brain — there’s hope on the other side. 

“You’ve been through a lot, and it may take a lot of time and patience to get back to where you were,” she says.