Julie – yup, me. For this last day of October, the last day of my own little breast cancer names project, I name me. Because I’m 14 1/2 years from diagnosis (and still counting) and still have No Evidence of Disease. Because although most people think of me as “cured,” I can never take my good health for granted. Because every single day I am grateful to be alive and still be healthy – every single day. Because breast cancer can and does come back, no matter the stage at diagnosis, no matter whether it was found early, no matter how many years have passed. Because far too many people I have known with this disease have died. Because I’m tired of saying goodbye. Because “awareness” is not a cure. Because scars are not cute or sexy. Because breast cancer is most definitely #notapinkribbon.
This is how I chose to end my October campaign, with myself. All month long, I’ve been posting names of people I know or have known with breast cancer. The first half of the month were names of people who have dies. Then I transitioned into names of people living with the disease, most of whom are living with Metastatic Breast Cancer – breast cancer which has spread to other parts of the body. But even for those of us who are not Stage 4 or Metastatic, breast cancer is part of our lives forever. We live with the knowledge that our cancer can come back at any time. Early detection or early stage is good, but does not guarantee we will remain cancer-free. Many of the people I named had their cancer come back after 10, 15, 16 years or more. Many of the people whose cancer spread were initially diagnosed with early stage disease.
We still need awareness. We still do need to improve awareness and access to screening for certain populations in this country. We do not all start on a level field. Poor women, minorities, and men could still use better awareness and better access to screening and care. Unfortunately, most of the big awareness campaigns do not target the groups who really need it. Too many are aimed at middle class white folks – just preaching to the choir. But most importantly, we lose track of the fact that awareness is not a cure.
And this is why I started listing names throughout the month of October. “Awareness” is not enough. Early detection is not enough. We are learning more and more that the type of breast cancer, the individual makeup of the cancer cells, is perhaps a more important measure of who survives. And to learn more, we need research.
Throughout the month, I’ve gotten a lot of comments from people. Some have asked to add names to my list. Some have started their own list. Many people have thanked me, and even more have offered hugs. Thinking about friends and colleagues who have died or are living with Metastatic BC every day does sadden me. And it angers me. But unexpectedly, I have also enjoyed it at times. I’ve thought about people I hadn’t for a while. Memories of them have made me smile. I’ve seen examples of tremendous beauty and grace from some of them. I have learned important things from them.
To everyone on my list, and so many more, thank you for enriching my life, even for a little while.
To everyone else, these are the names of breast cancer. We are not pink ribbons. We are not pink confetti or streamers. We are not “boobies” or “ta-tas,” with or without bras. We are people, women and men, with names, with faces, with families, with friends. Please keep us in mind. We are #notapinkribbon.