This is Not Pink

Written by Jeannine Love, ROW Team Member

I was at a Walgreens on Michigan Avenue when the call came in. I stepped outside, found a nook on the side of the building, and wedged my body into a corner to avoid the late September wind. Through the external and internal noise, I heard: “Biopsy results… two locations… first one benign… second one malignant… infiltrating ductal carcinoma.” I had no idea what IDC was, but I understood the words that mattered: malignant; carcinoma. I struggled to breathe.

I walked face-first into my first “Pinktober” before I had even begun to process. Suddenly, I saw pink everywhere: giant bows at Midway, pink decals in the windows of Garrett’s popcorn, pink stickers in the vending machines at Jewel. It was like I was seeing all this pink for the first time, encroaching on my daily life. It was overwhelming. I struggled to make sense of it. Somehow all this pink was supposed to represent what I was living through and yet it felt oddly like I was being mocked. I’d never been a fan of pink, but now I loathed it.

I figured out later that the unease I sensed initially was not simply the strange disconnect I felt between my reality and the ribbons, but the commodification of pink and the cheery slogans that actually minimize the impact of the disease. Pink awareness campaigns often reflect the ways society makes coping with breast cancer more difficult: misogyny and minimization.

My first experience with misogyny in breast cancer treatment came in the closing moments of my initial consultation with my oncological breast surgeon when I was told (not asked) the next step was a plastic surgery consultation. My initial reaction was resistance, and I was warned I would be pressured to reconstruct if I went through with the consultation. Ultimately, I chose to "go flat" and my surgeon was very supportive. But I have met many women who were not so lucky, and whose wishes for aesthetic flat closure were not honored; who were forced to have psych evaluations before their surgeons would consent; whose surgeons left them with unaesthetic results; or whose surgeons disregarded their wishes and gave them skin-sparing mastectomies instead. The assumption is that women will want reconstruction, and should want reconstruction, in order to feel “whole.” This is reinforced by the “save the tatas” pink campaigns.

Then, minimization. The response to my diagnosis that stung the most was the calm assurance that I had gotten the “good cancer,” the one “they can cure.” Neither of these assertions are remotely true. There is no good cancer. Cancer is terrifying and brutal, regardless of kind. And, more importantly, there is no cure for breast cancer.

Hidden behind all the pink frivolity is the reality that 6-10% of initial diagnoses are de novo, or metastatic at diagnosis. Of those of us diagnosed at earlier stages, 30% of us will progress to stage IV metastatic disease. There is no cure and 40,000 people die every year from this disease.

ROW was the first place I was able to connect with others who had also chosen to go flat, to see my body reflected in my community—it was incredibly impactful and I am so grateful to have had this normalizing space to learn to love my body.

Yet only a measly 2-5% of “pink” fundraising goes toward researching metastatic disease. However, when those with metastatic disease or their allies attempt to bring these realities to the fore they are often met with strong resistance and charged with scaring folks. I have seen this firsthand, watching my friends with MBC go toe-to-toe with panels of doctors for side-stepping metastatic disease. The response to shut them down was swift, the message clear: breast cancer is pink, not scary.

Thankfully, despite these experiences, I have been blessed with a strong and extensive community of support. Central to that community is Recovery on Water. ROW has been an antidote to pink. ROW is a safe haven from cancer treatment, and from the long-term impacts on our minds and bodies. It is a place to connect with others who have walked similar roads in our treatment and surgical paths, and to learn from those who have had different experiences.

ROW was the first place I was able to connect with others who had also chosen to go flat, to see my body reflected in my community—it was incredibly impactful and I am so grateful to have had this normalizing space to learn to love my body. ROW is a place to be honest about our fears and to face the realities of breast cancer head on, including metastatic disease. I am endlessly thankful to my metastatic teammates for sharing their lives—in all their complexity—with us.

Despite all the pink-washing, not all pink is problematic. It is up to each of us to research the organizations we donate to, to ensure that the funding is indeed going to support people impacted by breast cancer.

ROW is such an organization. We get the opportunity to engage our minds and bodies in new ways, learning a challenging but deeply satisfying sport. And we get to do so within a fierce, intelligent, funny, loving community. This team has laughed together, and we have grieved together. Our ROW family is a balm for the hearts and minds of those of us the pink ribbons are meant to represent. The pink ribbons here are hard-earned.

Endless thanks to those of you who make this community possible. There are no words for the deep and meaningful impact ROW has on our lives. I am forever changed for the better.