I like October, fall, Halloween and the month of Josie’s birth, but I’m not fond of breast cancer awareness month. It started with the first October after diagnosis when I picked up a local magazine that had a story about my new label, Inflammatory Breast Cancer. There was a picture of a teenager with her pompoms. She had symptoms and a diagnosis similar to mine; she died after six months. I read that it wasn’t a question of if it returned but when. I know that I’ve said this before but I have to repeat it, to mimic the track that runs over and over in my head, it said I had a 10% chance of living 5 years.
Then there was the tv news. I was fast forwarding through commercials one night when I saw the flash of a photo of a red, irritated breast, the mark of inflammatory breast cancer. Against my better judgment, I stopped to hear what they had to say. It was a teaser for the late-night news. The reporter said something sensational like: Are your breasts trying to kill you? That night I dreamt that I was filled with green spiders that were killing me from the inside and spilling out of my mouth and down my arms. It took months to get that image and those words out of my head and my dreams.
And then there’s all the pinking. Sure, when I was first diagnosed I found comfort in the pink. It was nice to know I was part of something bigger, that there were people living through this every day. But as I passed through treatment I began to feel like this was a club I didn’t really want to belong to. I’m not much of a joiner. I don’t really like pink. Inspirational symbols make me queasy.
I went to a cancer walk once when I was bald. I met a woman who was handing out pens with the website URL for an inflammatory breast cancer educational site. She started telling us about it. It was the deadliest form. I said I knew, that I had it. She gave me a sad look as if I was already dying.
I think she was the one who sent over the news crew that morning. When the reporter asked what brought me out for the walk I wanted to tell him the truth, that my mom dragged me. I wanted to tell him I was worried about my upcoming mastectomy, that I wouldn’t have enough skin to cover the hole where my breasts used to be. I wanted to tell him about the lesser known side-effects of treatment – Let’s talk about vaginal atrophy, shall we?
But I knew he wanted me to say something like: No one should have to face cancer alone or Together we’re going to beat this damn cancer, or some other rah-rah bullshit. But I could tell that he didn’t really see me. He didn’t care that I wasn’t a joiner or that I never liked pink. He saw the inspirational story he wanted me to be.
That day, I hadn’t had the fight in me or the presence of thought to articulate my desire for independence. Instead I just told him I wasn’t interested in being on television.
This time of year, when breasts invade the news, when even the milk cartons are dressed in pink, when giant pink ribbons are stretched across a football fields, I do my best to remember my early days accurately. I hold my unique fear and unique experience tightly in an effort to keep it from being repackaged and rebranded, and to keep myself from being engulfed in this homogeneous sea of pink.