A couple of years ago I had dinner with my friend Alicia and her daughter, Steff. It was October. Steff, a senior in high school, was just finishing her final year of school, but just barely. She had missed months of school while she underwent surgery, chemo and radiation for a brain tumor.
There was a sign on our table that said "October: Breast Cancer Awareness Month! FREE appetizer if you donate to breast cancer awareness!"
Awkward.
We talked about how it's hard for someone struggling with NOT breast cancer to wade through the sea of pink in October. Steff said she felt invisible, that her cancer was somehow less important.
I know some of you can relate.
Let me just say this now. You do matter. You are not invisible.
And I am annoyed by Pinktober.
As a "former" breast cancer survivor, now that I have metastatic disease (cancer that has spread beyond the breast to other tissues), I'm not sure what to call myself now. I'm not technically a survivor (unless they figure out a cure...), but I'm not dead, either. I'm very much alive, doing the best I can on the drugs that are available to me, hoping beyond hope that they come up with new treatments that will keep me alive long enough for someone to find a cure.
Those of us with metastatic disease refer to October as "Pinktober." For us, breast cancer is not something we've "beaten." Some of us have been asked to leave breast-cancer support groups because we scare the other people there (seriously - I'm not making this up). And the statistics about breast cancer are woefully misleading. Only those who were diagnosed initially with stage IV (metastatic) breast cancer are counted as metastatic. (So the number of "successfully treated" patients is artificially inflated.)
What does this mean? I was first diagnosed in 2005 with early-stage breast cancer and I completed treatment, so therefore I am counted as "successfully treated." My breast cancer came back years later (I was diagnosed with metastatic disease in 2013). Only when I die from this disease (and I will, since metastatic breast cancer has a 0% survival rate), will I be counted among the metastatic statistics.
And why is this important? From the Metastatic Breast Cancer Network (MBCN) website:
"According to the Metastatic Breast Cancer Alliance’s Landscape Analysis, which analyzed research grants from the major cancer research-funding agencies around the world, research funding for metastatic breast cancer accounts for only 7% of the total breast cancer research investment. Without an ACCURATE count of the number people currently living with Stage IV breast cancer, that number is unlikely to change."
Each Pinktober, my thoughts turn to the friends I've met because of this disease, and lost to this disease - Carey, Trina, Dani. And I think of friends who are battling cancer - not just breast cancer - Steff, George, Jenny and Scott, Jo, Judy, Sheila and Sheila, Walt. You are NOT invisible. You matter.
People have said to me over the years that they admire my strength and positivity. If I am strong, it's because I had no other choice. If I am positive, it's because for me, that was my only option. Being negative isn't going to help! But choosing to hope... that's something.
