Getting the Better of Chemo Brain

Somehow, Katie Goodyear's water bottle has morphed into a symbol of forgetfulness. She even tracks it on Twitter: For those keeping score: I've officially lost my water bottle 3 times since I started radiation. Yesterday. #chemobrain

Goodyear, 36, a computer engineer in North Bay, Ontario, was recently treated for cervical cancer. After surgery, as she went through chemotherapy and radiation, she found routine tasks had become anything but. "Some days I'd even forget to brush my teeth," she says.

Two months ago, doctors found a new tumor in her abdominal wall, and Goodyear is finishing another round of radiation. Although she's not on chemo, the mental fog persists. "I used to have a really good memory; I was always well organized," she says. Now, however, "If I don't write it down, it gets lost somewhere in my brain."

During or after cancer treatment, some patients describe losing words, short-term memory problems, disorganization, having difficulty recalling names and faces, trouble concentrating and no longer being able to multitask. Fortunately, these problems usually fade -- and in the meantime, a variety of methods can help people cope.

Chemo Brain: It's Legit

In the past, clinicians tended to brush off these complaints of mental confusion. Standard neuropsychological tests might not have picked up on subtle changes caused by chemo brain, says Dr. Patricia Ganz, a professor of health policy management and medicine at the UCLA Fielding School of Public Health and David Geffen School of Medicine.

At Jonsson Comprehensive Cancer Center, part of UCLA Medical Center, Ganz conducts research that matches the mental issues patients experience to results from brain imaging tests such as MRI or PET scans. "We are developing some confidence that patients who are reporting these problems are having real difficulties," she says.

Estimates of just how many patients experience chemo brain vary widely. "The good news is about 70 to 80 percent of people who are affected go back to their baseline within nine to 12 months," says Dr. Arash Asher, director of cancer survivorship and rehabilitation at the Samuel Oschin Comprehensive Cancer Institute at Cedars-Sinai Medical Center. "The challenge is that 20 to 30 percent tend to have persistent symptoms."

Memory Gaps

Goodyear relies on her Blackberry and other tools to jog her memory. "I put all my appointments and phone numbers and dates in there," she says. "I have a written, old-school agenda, too, where I keep all my doctors' appointments and things like that."

Family members understand what she's going through. "My husband will say that we had a conversation, and it will feel as foreign to me as if someone said I was in China that morning," she says. "At times you get really snappy -- you feel defensive almost immediately. Sometimes he just talks around it and is really patient and knows it's not him I'm snapping at, but at the situation." Humor, she says, has been a necessary coping tool for the couple.

Not Just Chemo

"Chemo brain" isn't really the best term, Asher says, to describe what medical literature refers to as "cognitive changes after cancer treatment."

Ganz says people come to a cancer diagnosis with a variety of exposures, from smoking to heavy drinking to chronic conditions like diabetes. Cancer surgery, chemotherapy, radiation and hormonal therapies may all trigger an inflammatory response in the body that can affect the brain. Fortunately, she says, "When you go into the post-treatment period, all of that disruption is going to settle down. Your body is going to quiet down in terms of inflammation and this toxic exposure."

However, symptoms linger for some. "Those are the survivors that a lot of us have been working with who've kind of complained -- 'You know, I was a lawyer; I used to be a litigator but I just can't get myself together to do that,'" Ganz says. "They're not totally disabled but they can't perform at the same level."

Searching for Words

Ronda Walker Weaver, 56, of Orem, Utah, went through surgery, radiation and chemotherapy for breast cancer, completing chemo about two-and-a-half years ago.

Weaver, who teaches at Utah Valley University and is a hospital chaplain, blogs on the nitty-gritty of chemo brain. Although she's plenty articulate, she sees a big before-and-after treatment difference. "There are times I have looked for a word, and it is nowhere to be found," she says. "It's not even on the tip of my tongue. I can't even find it in my brain files."

"Part of chemo brain is also anxiety and stress that comes from just that pressure to perform," she says. Whether it's balancing a checkbook or averaging grades, she's learned to simplify, take notes and turn certain tasks over to others. Mnemonics help her recall acquaintances' names. In contrast, Weaver does fine with complex functions like editing papers for a business English course for second-language speakers. "I wanted to retrain my mind to look for those details and idiosyncrasies," she says. "I knew I did it once, and I knew I could do it again."

Workarounds

Experts offer these tips to overcome chemo brain -- starting with telling your doctor about symptoms.

-- Figure out what you can fix. "That means sitting down with your doctor and looking at your medications," says Karen Syrjala, co-director of the Seattle Cancer Care Alliance Survivorship Clinic, in the Survivorship Program at Fred Hutchinson Cancer Research Center. "Do you have medications that might be interfering with cognition?" Cutting back on no-longer-needed anxiety, sleep or pain medicine may help.

-- Sometimes people on chemo find themselves fatigued in the late afternoon, she says. Learn to pace yourself and take a restorative break. Schedule activities for times of day you know are best.

-- Get enough sleep. "We know inadequate sleep disrupts cognition," Syrjala says.

-- Meditation, yoga and stress management can reduce anxiety and allow clear thinking.

-- Learn to calm yourself when symptoms arise. It's about being able to stop yourself and say, "Wait a minute; it's just a moment of forgetfulness," Syrjala says. "Very often what you're looking for will just pop into your head."

-- Exercise. A recent study on chemo brain found symptoms improved more for patients who exercised.

-- "Just do one thing at a time," Asher says, although he admits that's not easy for someone who once could simultaneously talk on the phone, follow a recipe and keep an eye on the child in the next room.

-- Remember that mental slips aren't always about cancer treatment. "We all have chemo-brain moments," Asher says. "When you have anything serious that happens to you, you have a good-old-days bias."

On the Job

"The hardest thing for people with chemo brain is that they look and seem so normal to everyone else," Syrjala says. "And this is true for employers also." When it comes to discussing symptoms with employers, "you just want to be thoughtful," she says. "Usually it works better to start with the HR department." If your thinking is really disrupted at work, she suggests seeking a neuropsychological evaluation to pinpoint specific deficits and coping strategies.

Reducing disruption helps. "I've had people, for example, who were right in the pathway of all the people in the hallway, where everyone came by their workspace," Syrjala says. "And they're talking; they're saying hello -- a lot of disruptions." Moving to a quieter workplace corner makes sense.

Go Easy on Yourself

Weaver volunteers with the Living Beyond Breast Cancer helpline (888-753-5222) and frequently hears from women distressed by forgetfulness and other symptoms. LBBC offers a webinar on chemo brain. You can also learn more from the American Cancer Society at 800-227-2345.

Goodyear "oscillates" between frustration and acceptance. "There are definitely days where I'm super annoyed that I can't do the crossword puzzle like I did before," she says. Lately, though, "I've just learned to live with whatever kind of day it is," she says. "And if it's a good day and I haven't forgotten anything, that's awesome. If it's a bad day and I've forgotten something, I might take it a little harder, but yeah, it is what it is."

Lisa Esposito is a Patient Advice reporter at U.S. News. You can follow her on Twitter, connect with her on LinkedIn or email her at lesposito@usnews.com.