PEORIA, Ill. – Debbie Kamplain has poured orange juice on her son's cereal. She's waited expectantly for a return phone call only to realize she forgot to make the original call.
She's heard of a woman who poured gravy into water glasses on the dining room table and one who ordered olives for dinner. The common denominator among them all is chemotherapy. "Chemo brain" is the fuzzy, cloudy, unfocused feeling cancer patients struggle with but family and friends often fail to understand.
Kamplain's oncologist, Dr. Paul Fishkin, said chemo brain is one of the survivorship issues cancer patients deal with.
"This area of cancer fatigue or 'chemo brain' is real and not as well understood as it should be," said Fishkin of Oncology Hematology Associates of Central Illinois.
Recognizing the symptoms of chemo brain could make family and co-workers more considerate, Fishkin said.
He prescribed Ritalin for Kamplain. She said the medication helps but doesn't cure. Fishkin said chemo brain can last from months to several years. Kamplain said the thought of struggling with short-term memory loss for several years terrifies her. But knowing is better than the doubt and fear of not knowing. She said people are aware of the hair loss associated with chemotherapy, but few understand the memory loss.
"I jumped on the computer and learned from women all over the world," she said. "Discussions on chemo brain show the universals. When it's happening to you, you start to question yourself. You're embarrassed by the ridiculous things you do."
— Like driving to the grocery store to buy soda and forgetting why you went shopping in the first place.
— Showing up for rehearsal after being told rehearsal was canceled.
— Forgetting what she and her husband were talking about in the middle of the conversation.
— Asking her son if he'd like juice and then forgetting in the few moments involved in walking to the refrigerator.
"Poor kid. Daniel keeps me on my toes," Kamplain said about her young son.
"Chemo brain is a kind of chemo fog. There is a sense of despair because you can't think things through. It's almost painful," she said. "Sometimes it feels like my head will burst into flames."
Just knowing about chemo brain has helped Kamplain cope. She writes notes to herself and keeps pen and paper close at hand. She hired an organizer to help her pack and attend to all the details of moving from Peoria to Crown Point, Ind., where her husband took a job with better health-insurance benefits.
Kamplain, 32, was diagnosed with breast cancer Sept. 29, 2005. Her son, Daniel, was 15 months old. It was an aggressive cancer. She decided to go for a bilateral mastectomy and had the maximum amount of chemotherapy followed by eight weeks of radiation.
"Dr. Fishkin believed me immediately when I said something is not quite right. I can't function," Kamplain said. "I forget words mid-sentence. I had trouble running this household. I had an almost childlike inability to follow through on things."
Cognitive disfunctioning often accompanies fatigue, anemia and depression among cancer patients. Fishkin said these symptoms are often interrelated. Chemo brain is diagnosed in men as well as women.
Laura Miller, nursing educator at Oncology Hematology Associates, said cancer can become like a chronic disease that people live with. As survivorship stretches into years, issues of survivorship, like chemo brain, are being documented. Chemo brain is more common in patients who undergo high doses of chemotherapy, she said.