Physically Ill

Catherine and Sabrina are absolutely fine, but recently I have had to do some basic research on brain tumors again. I needed to familiarize myself with the various types of tumors, how they are named, where in the brain each occurs, which can be resected and/or radiated, which need chemotherapy, and the side effects and survival rates of each.

Last night, as I was doing this research, I remembered how I felt in November 2007, when Catherine was first diagnosed. I remember sitting in the doctor's office with a pad of paper and asking the oncologist to spell all those medical terms. Then I went home and googled scary terms like "optic glioma," "vincristine," and "carboplatin." I remember searching the internet for survival rates and what factors could improve her chances of survival. Did I have any control over those factors? My controlling personality wanted to steer the course of this journey.

I spent days doing internet research. I was terrified. I had never read medical journals before and struggled trying to make sense of them. But, it was essential for me to understand as best I could what was in Catherine's brain. I remember the fear and how it manifested itself physically: I was shaky, weak, and nauseous for days. Actually, weeks. Well, maybe months.

Last night as I was doing research for a project I am working on I experienced this same reaction. This time I was only doing research for academic purposes, not to help my daughter. Yet I still felt that same sick feeling in the pit of my stomach. I had trouble walking down the stairs, shaking as I held on to the handrail. I had to hold back tears. I was in utter shock at the facts I had learned.

Perhaps it was the statistics that got me. There are some brain tumors that only have a 10% survival rate with children. That means that 9 out of 10 kids with that tumor will not make it. There are a lot of brain tumors with only 50% survival rates. It breaks my heart.

Perhaps it was the side effects that got me. Radiating a young, developing brain can have devastating effects. Some children have to relearn how to walk. They lose abilities they have had for years. They develop permanent learning disabilities. They are alive, which is priceless. But the price they have paid for their life is high.

I have seen firsthand with my own daughter the neurological damage she sustained due to eighteen months of chemotherapy. We are working hard to build up her physical skills. But, it still breaks my heart when I see one- and two-year-old children who can hop on one foot, skip, kick a ball, run, play hopscotch. Catherine will some day have those skills, but not yet. I am so grateful that she doesn't seem to notice her lack of physical strength and coordination.

I am of course grateful that the only major lasting side effect we have is her physical limitations. I have so many cancer mom friends whose children are functionally blind. Who have colostomy bags due to colon removal. Who are wheelchair bound. Who have lost the ability to use portions of their body due to strokes.

Or, everyone's greatest fear, there are the cancer moms I know who have empty laps where children used to sit. Who celebrate birthdays by releasing balloons to heaven. Who light a candle on Christmas morning to remember the child who used to have presents under the tree.

So it thrills me to help Catherine learn to hop like a bunny. To kick imaginary balls. This physical therapy/play time is wonderful and I treasure it.

But brain tumors still make me physically ill. Even when I am not holding a patient in my lap in the hospital. Even in a clinical medical journal, in a purely academic sense. It makes me sick.