Worse than Cancer

Cancer is the Big Bad of our fears.

“What if I get cancer?” we whisper to ourselves when we’re feeling afraid and want to put a name to the nameless dread that creeps in.

There are worse things. There are a lot of worse things. Even in the disease category, there are a lot of worse things.

Cystic fibrosis is worse than cancer.

I first found this out back in my youth, when I thought I wanted to be a doctor and was working for a summer in my pediatrician’s office. He was a pediatrician but he was also a pediatric pulmonologist specializing in cystic fibrosis.

There are a lot of reasons that medical science is, for me, the road not taken. I’m a terrible scientist, or at least a terrible metrician. I don’t even measure when I cook. Not even when I bake. I haven’t yet mastered the art of cooking rice without measuring it, but I aspire to. I’m a slacker, and I like immediate gratification, and I prefer to work alone. All of these things are true. It’s also true that I’m good at science, that I get it, that I read it for fun, and by reading science, I mean that I read Science magazine, not Discover or Popular Science or the Science Times, although I read those too. If I had gone on to become a doctor, I would have become a pathologist, and it was this realization that led me to declare English, not biology, as a major: to become a writer and not a doctor. “I don’t want to spend my life in front of a microscope,” I said to myself. It was the truth, but it was only part of the truth.

The greater part of the truth is that I don’t have what it takes to be a doctor.

I learned this about myself when a patient in our practice died during the summer between my sophomore and junior years of college. She was eight, and she had cystic fibrosis, and she came in for appointments a couple of times a week for a couple of weeks, and the doctors looked worried, and then she died.

She was eight.

She had dark brown hair and dark brown eyes and she liked ponies, she usually wore a lavender dress, and she liked to sing, and then she was dead.

“Death is the business of doctors and poets,” I said to myself through my tears, and it was on that day I knew my vocation was the latter, and not the former.

I’m thinking about this again because I have a friend whose daughter has cystic fibrosis. It’s a terrifying disease, and it’s a disease that strikes children by default because people who have it often don’t live to grow up.

Cystic fibrosis was the one disease I tested for before I decided to have children: it’s a genetic test, and, while it’s not 100% accurate, you can find out whether you carry a mutation in your CF gene. I don’t.

Evidently my friend does, because her daughter has CF.

She’s a friend I met while playing Warcraft for ten hours a day during the years I was going through cancer treatment and recovering from it.

I knew her daughter had health issues because sometimes she would play with us and sometimes she would not feel well enough to play Warcraft. I know the feeling of not feeling well enough to play Warcraft. It’s not a good feeling. Eventually, I found out that my friend’s daughter’s health issues had a name, and that the name of the issues was CF.

By this time, the cat was out of the bag and everyone I played Warcraft with knew I had had cancer.

“Everyone feels sorry for me because of ‘mah issues,’ ‘I said to my friend. “But yours are epic worse and don’t ever think for a second that I don’t know that.”

“Yeah. Thanks, I guess,” said my friend. “I mean, thanks, but it’s epic suck.”

My friend was a few years younger than me, and her daughter was a teenager. I did the math once, and I have forgotten it (see the above part about my being a bad metrician) but I remember that my friend was quite young when she had her daughter, and by quite young, I mean well shy of 20.

Teen mom has a child with cystic fibrosis. It’s the stuff of after-school specials.

I got word this morning that my friend’s daughter is not doing well. That she may be reaching the end of her fight.

My friend has been an amazing mother. She’s fought, and fought hard, for her daughter to receive outstanding medical care. A great high school experience. A great life.  It’s what you can do for your kid when you are brave enough.

Heroes do walk among us. We just need to know where to look.