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By Carissa Haak
 Jupiter Images |
Thea North sits behind the receptionist desk at Gilda’s Club Desert Cities — a support organization in Cathedral City for people living with and recovering from cancer — and answers the telephone when it rings. She jots a message and walks down the hall to deliver it. If she didn’t write down the message, she would not remember it. “Like anyone else, I could mislay my car keys,” North says. “But to the extent of what I’m dealing with now, it was never this bad.”
North suffers from short-term memory loss and word-recollection difficulties — symptoms of “chemo brain.” The term describes the association between cancer treatment and cognitive dysfunction, which encompasses changes in concentration, short-term memory, word recall, and the ability to multitask. Physicians once thought that chemicals used in chemotherapy to treat cancer could not breach the blood-brain barrier. Now they suggest that the chemicals can affect the brain. Where there’s chemo brain, there’s controversy, as doctors explore what causes it and who is most susceptible.
“Nobody really knows what causes chemo brain,” says Dr. Elber Camacho, head of the oncology department at Desert Regional Medical Center in Palm Springs. “It is most likely a change in the neurotransmitters in the brain, which affect how the neurons communicate with one another. Chemotherapy can block or stimulate these neurons, but it does not kill them. It affects them.”
In a 2007 study conducted by the Hurricane Voices Breast Cancer Foundation, 471 cancer patients participated in an online survey about their experiences with cognitive changes related to chemotherapy. Fifty percent noticed loss in cognitive function after beginning chemotherapy and 35 percent after treatment ended.
“I wasn’t sure what to call it when I first noticed, so I called it ‘foggy brain,’” North says. It wasn’t until going to group sessions at Gilda’s Club that she realized others experienced similar symptoms. “One member brought in an article about chemo brain, and a lot of us seemed to have it,” North says.
Because chemo brain affects such a wide range of patients, it is hard to diagnose, as each person’s experiences with their own cognition are different.
“Cognitive functions are difficult to quantitate,” Camacho says. “You cannot have a patient that will not react to the stress of being diagnosed with cancer. When a patient is told they have cancer, there is depression and anxiety. When they actually go through chemotherapy, there are many physical symptoms. The scientific community overall agrees their cognitive functioning is diminished, but how much of it is really the chemotherapy?”
Marci Iglow, another Gilda’s Club member, noticed changes in her cognitive thought process after receiving chemotherapy.
“I could be having a conversation with you and someone could interrupt, and I wouldn’t remember what I was saying or what planet I was on,” Iglow says. “So I depend on my organizer; it’s like my bible to life. Without it, I would never remember where I was supposed to be.”
Iglow tries to keep a positive attitude and stay active. “Exercise helps me increase my physical activity,” she says, and most physicians agree that physical activity is important to maintain a well-functioning body and mind. Mental exercise also helps.
“Just like the athlete who trains to run a mile and can run that mile without breaking a sweat, and then someone else tries to run a mile and is sore the next day, it is important that we exercise our brains. It better prepares them to withstand the effects of chemotherapy,” Camacho says.
These effects — as well as the initial diagnosis and treatment — change the lives of cancer patients that experience them, whether it involves their relationships with family and friends or their ability to perform their jobs.
“I tried to go back to work as a waitress,” North says. “I used to be able to take orders without writing them down and go over and punch them all in, but I just couldn’t do it anymore. I couldn’t carry all the trays. I didn’t have the physical and mental strength.”
Now retired, North copes with her symptoms by taking notes and doing brain exercises, such as crossword puzzles. Patients have reported that note-taking, playing thinking games, keeping journals, adapting healthier diets, concentrating on getting quality sleep, and establishing routines at home and work help regulate their symptoms. North calls herself “the Post-it note queen.”
“If it’s something important, I just remember to write myself a note. Usually, if I give myself a reminder, it will click back. It’s like my brain short-circuits for a second.”
In many cases, chemo brain eventually wears off. Forty-eight percent of the respondents of the Hurricane Voices study reported still having symptoms between one and five years after treatment, but 41 percent of respondents said that they noticed some improvement.
Still, patients like North and Iglow refuse to let chemo brain control their lives.
“I’m an avid reader; books are my joy,” North says. “I find now that if it’s an important part of the book, I absolutely am highlighting. It’s because I’m going to forget it, and then I’ll have to come back to it. So when they give me a brief description of the lead character, I will highlight it. I can get three-fourths of the way through the book and go, ‘Who’s this person?’ So I’ll flip back, read my highlighted section, and it will click back.
“It’s more difficult this way,” she admits, “but I’m not going to let cancer rob me of the joys of life.”
How to Adjust and Cope
* Take notes. Carry a personal organizer or notepad. Taking notes will help you remember what you are doing and what you have done. Once reminded, most chemo-brain patients can recall what they have forgotten.
* Get active. Spend as much time as possible outside. Mild exercise will help optimize your daily performance.
* Stay positive. Remember that your mental capacity will likely improve after chemotherapy.
* Speak out. Talk about your symptoms and struggles. Join a cancer support group or talk to family and friends. Sharing your experiences eases the weight of your difficulties off of you and helps release your stress and frustration.
* Play mind games. Exercising your brain helps diminish the severity of chemo brain. Try crossword puzzles, word searches, Sudoku, or memory games.
* Get plenty of sleep. The more sleep you get, the less severe your symptoms will be. Make sure you are refreshed every day so that your brain can perform optimally.
* Make it routine. Creating routines at home and at work will help you remember what you need to do. Establish daily rituals that you can easily memorize.
* Perform one task at a time. Don’t burden yourself with multiple tasks. Doing one thing at a time allows your mind to focus on getting the job done.
* Give it time. Allow yourself time to relax in your tasks and be patient. This will minimize your frustration and alleviate stress. The less stress in your life, the better you will be able to manage chemo-brain symptoms.
* Get help. If something is too much for you, don’t force yourself to take it on. Ask for help from family and friends, and take more time to relax. Try to not take on responsibilities that will worsen your frustration.
How to Give Support
When a family member or friend undergoes chemotherapy, you can make their lives easier by following these tips.
* Lend an ear. Make sure you are always available to listen. Encourage your loved ones to talk to you about their issues, or encourage them to seek a support group with others who can relate.
* Offer help. Sometimes it’s frustrating to ask for help. If you see a loved one struggling, offer to help them. Sharing the burden will make things easier for them to cope.
* Be patient. If a loved one becomes forgetful or struggles to explain something, understand that it is not their fault and be patient with them. Give them time to work through things.
* Become a buddy. Offering to participate with a loved one in a new sleeping schedule, exercise routine, or other lifestyle change will help them feel less alone.
* Stand strong. The best thing you can do is to stay strong for your loved ones. Be the support.
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