Diagnosed with stage 2 breast cancer in February 2014, Karen Reynolds triumphed through eight rounds of chemotherapy, lumpectomy surgery and six weeks rounds of daily radiation. Her treatment was completed in November 2014, but even as she regained her physical strength, her mind was slower to recover.
Reynolds didn’t notice it herself at first. It took her sister pointing it out to help her see what was going on. She was having trouble remembering things that, prior to treatment, she’d have recalled with no problem.
Medical visits at the Cancer Treatment Centers of America® (CTCA), where she was treated, were a prime example. She’d listen dutifully during her appointments. She’d hear the information, discuss it with family/caregivers after the medical visits, but later that night or the next day it was gone from her memory. Her sister would ask her questions related to the visit, and Reynolds couldn’t recall the answers.
“It was like I didn’t know what she was talking about. It was like I’d never heard it,” Reynolds says.
What Is Chemobrain?
What Reynolds experienced is relatively common among breast cancer patients, as well as those diagnosed with some other types of cancer. Chemotherapy is a known trigger, although symptoms have also been reported in cancer patients receiving other types of treatment.
The deterioration of cognitive function, known as chemobrain, may occur during or after treatment, and it may last for just a few months or continue for years. Everyone’s experience is different, but many people report memory problems, trouble concentrating, difficulty multitasking and a general mental fog.
It Can Take a Practical Toll
It’s easy to take your sharp mind for granted—until it starts to fail you. In Reynold’s case, she tried to continue working, but the demands of her career proved to be too much. She couldn’t function the way she used to and had trouble keeping up, so she made the decision to take a medical leave.
There were practical implications for her daily life as well. “I would write things down in a notebook,” Reynolds explains, referring to reminders, phone numbers, important dates and other types of information to help her function on a daily basis.
“But then I’d lose the notebook,” she said. “Or I would write down notes but then I couldn’t remember or process what the notes meant.”
For Reynolds, chemobrain led to memory loss along with trouble processing information and forming practical next steps. “I knew the big picture of what I needed to do (such as I need to get across town), but I couldn’t figure out the next steps to achieve it,” she says.
Emotions Can Run High
It wasn’t only logistical issues that Reynolds experienced but also emotional ones. She described chemobrain as “scary” and “emotional,” saying at times she would just cry because it was so rough.
She found that stress heightened her symptoms, and visual clutter (such as in her home) could be overwhelming for her. “Visual clutter wreaked havoc on my brain. If things were unorganized, I didn’t know where to start or what to do to fix it, and that feeling carried over into other tasks in general” Reynolds says.
Staying Organized Can Help
Reynolds worked with a cognitive therapist at CTCA® in Newnan, Georgia who helped her work through her symptoms. The therapist gave her strategies for taking notes including how to separate work tasks from personal life and making notes more visual so she could visualize her priorities on the page.
The therapist also suggested using brain games and apps, which you can find online for your computer, tablet or mobile phone. The games challenge your brain—requiring you to match shapes or sequence letters and numbers, for instance. Reynolds uses the games frequently and did so during treatment as well.
At home, she also tried to minimize visual clutter and worked on minimizing stress. “On a scale of 1 to 10, with 10 being the max, stress pushed my symptoms to 13 or 14,” she says.
Reynolds’ chemobrain symptoms lasted for about a year and then started to dissipate. It still pops up now and then, however, especially when her work life gets hectic. At times when she was at work, “it was like they were speaking a foreign language,” she says.
Fortunately, her managers have been understanding and would help by sending her additional recaps of meetings and other important information as necessary.
Advice for Friends and Loved Ones
If you have a friend or family member struggling with chemobrain, you can be an immense form of support. Reynolds’ sister was a great help to her, especially in not displaying annoyance and helping her joke about the situation and make light of it.
She would laugh together with friends, too, who would patiently point out when Reynolds repeated herself or forgot things. I often now ask, “have I shared this already?” You can help, too, by being patient and understanding with a loved one struggling with chemobrain. Reynolds says:
“Friends and family may not believe you at first. They may think you’re making the symptoms up. This makes it worse, especially if they don’t treat you with dignity. So please, be patient. You may need to repeat things.
And make light of it when you can. Don’t make the person feel worse, because they may already feel like they’re burdening you.”
Live Intentionally and Without Self-Criticism
Throughout her cancer journey, Reynolds has learned to be intentional about her life. She knows her stress triggers and points of frustration and takes intentional steps to avoid them. For instance, Reynolds travels frequently for work, so she packs the night before and plans to arrive at the airport very early.
Now, instead of driving herself to the airport, she arranges for transportation and doesn’t leave anything until the last minute (as was her practice prior to cancer treatment). Reynolds says:
“Being organized is critical. I take my time and pace myself because if I get overwhelmed I will have a meltdown and cry. So I do what I can to not get overwhelmed.”
Another trick that has helped Reynolds is listening more and being less reactive. She has realized that she can just listen and respond when she is asked, as opposed to having to immediately come up with a response or a solution. She has accepted that she’s not responsible for fixing everything, and this helps her keep stress levels to a minimum.
Finally, if you’re experiencing the symptoms of chemobrain, Reynolds stresses that you shouldn’t be too hard on yourself. Accept the situation and your current level of mental function, and take it one day at a time. She says to others experiencing chemobrain:
“Don’t feel guilty, don’t fight it; don’t beat yourself up. It [chemobrain] might not happen, but if it does, it’s OK.”