About 6 weeks ago, just as summer was getting started, I was diagnosed with breast cancer. I started radiation treatments three days ago. When I got the unexpected news, my first reaction was “You have got to be kidding me!” I entered a free fall towards a plethora of stunned, confused and angry feelings; I truly felt as if I had absolutely no room in my life for yet another medical crisis. Taking care of Sylvie was enough.
However, my immediate health situation isn’t a crisis. It may have been 5 years ago prior to having my lovely twins and living with the daily reality of a chronically ill child. But the type of breast cancer I have is non-invasive and is considered stage 0 on the spectrum. I feel odd even talking about it, because ultimately with a little surgery and 28 days of radiation, I will essentially be out of the woods with this scare. But overnight I became part of a national statistic: about 1 out of 8 U.S. women are diagnosed with breast cancer at some time in their lives. I’ve joined humanity! I’m not dealing with an orphan disease that affects only 1 in 100,000 individuals. I’m not making light of breast cancer, but this is not a death sentence I am dealing with. Most breast cancer cases, if diagnosed early, are treatable--unlike my Sylvie’s illness, which has no treatment.
Additionally, I was stunned by the vast amount of information made available to me at my local hospital regarding cancer. In the course of 4 hours, I saw three cancer M.D. specialists, a psychologist, two nurses, and a representative from the American Cancer Society. I was given a packet of resources the size of a phone book, and I have gotten follow up phone calls asking how I am doing. This is in stark contrast to the one sole neurologist who had the lousy job of telling us Sylvie’s diagnosis three years ago. He’s a great doctor and really helped us along the way as we tried to pinpoint why Sylvie’s motor skills were degenerating. He hugged me and my partner after he told us that Sylvie had a rare and degenerative disease, but we basically were left to our own devices to make sense of Sylvie’s future and her medical situation.
Dear Hopeful Parents readers, here is a true confession. Sylvie’s dad and I have been somewhat glib when we go to functions for families with special needs, because sometimes we feel as if we’ve got it worse than anyone else—“Ha, your kid is missing a limb, well my child is going to die!” “Ha, your child has tantrums—our child can’t even talk or walk, let alone scream and kick!” I sometimes even think this when I read other entries on this website. Ultimately this mental competition about whose child has it worse doesn’t make extreme parenting any more or less easy. But when you are on the end of the spectrum where death is presented as the inevitable—such as those of us dealing with these rare and weird orphan diseases—it can help us cope temporarily.
But here I am, spending my summer getting my left breast radiated, and it’s not so bad. I can’t say I’m filled with dread or fear or nausea, because my cancer isn’t aggressive and it’s a somewhat known entity in the medical arena. I have the summer off, I live close to a high quality medical facility, I have insurance, and I’m spending more time focusing on exercise and diet. For once in my life, I’m extremely grateful to be on the other end of the spectrum where things don’t look so grim. I’m up for this challenge and am convinced I will be a survivor!
When Kirsten isn’t taking her summers off to go to radiation therapy five days a week, she works as a professor of Communication Studies at the State University of New York and is the mother of 4-year old twin girls.