The Birth of a Breast Cancer Activist

Breast cancer wasn’t on my radar until my sister Zita was diagnosed in 2004, followed by my sister Mary Jo in 2006. Having two first-degree relatives with cancer in their forties I was on higher alert, but still unaware a direct hit was heading my way. For my sisters and others with BC, I started paying more attention to awareness/education campaigns and fundraising efforts regarding the breast cancer cause.

To celebrate Zita’s one year of survivorship, Darcy, stroller-bound Sam, and I proudly participated in the Twin Cities Komen for the Cure 5K on Mother’s Day 2005. Garage sale fundraisers for Komen 3-day teams got my support and extra donations. It felt good to help out the cause and my sisters, even if it was in little ways. In 2008, when my own breast cancer diagnosis played out, I started collecting Yoplait yogurt lids and mailing them in. With 10 cents a lid going to Komen, I was pleased that with the help of colleagues I mailed in 400 lids one time.

Every little bit helps. It all makes a difference. But soon I began to ask more questions about who it was helping and what kind of a difference it was making.

After my own diagnosis, treatment, and surgeries, I started to internalize aspects of the breast cancer movement in ways I never had before. In the following years, I developed some real concerns about it all. Pink wasn’t a color I ever preferred, and as I learned more about the cause so noticeable because of all of the pink it promoted, I even started to see red in anger.

Voraciously, I read about the history of breast cancer and the more recent history of the breast cancer movement that spawned the ubiquitous pink ribbon. I also read the writings of other women who had breast cancer and had opted to not have reconstruction. Audre Lorde’s The Cancer Journals and Tania Katan’s My One Night Stand With Cancer: A Memoir helped me come to a deeper level of acceptance and appreciation for the choice I had also made to not have reconstruction. A choice I have not regretted.

Lorde wrote of a time when she went to a doctor’s appointment and didn’t wear her prosthetic. She was admonished by the nurse who told her she needed to wear it because it “wasn’t good for morale.”  That impacted Lorde heavily and resonated with me strongly when I read it. Whose morale was she referring to? Certainly not Audre Lorde’s or mine. Tania Katan has been known to run 5Ks shirtless, showing her mastectomy scars and raising real awareness of what breast cancer can do to women. She has been applauded by some and shamed by others. Breast cancer ain’t pretty folks and maybe we’ll make advances faster if we put money where it matters most—finding a cure and lowering the decades-old average of 40,000 a year who die of metastatic breast cancer in the U.S. alone.

At times, I too have felt judged by societal norms and gender expectations, especially in the months when my scars were still healing and I was still adjusting to my “strange vacancy.”

Maybe it was just me coming to terms, but it is apparent that we live in an over-sexualized culture inundated with images of women’s breasts. I am defined by far more than my breasts.

I discovered the well-written and sharp essay “Welcome to Cancerland” by Barbara Ehrenreich around this time as well. In 2011, I read a book that tapped into some of the concerns and mixed emotions I had  about the wider breast cancer movement and how it didn’t connect with some of the new knowledge and perspective I had gained. The book is titled Pink Ribbon Blues: How Breast Cancer Culture Undermine Women’s Health and was written by Dr. Gayle Sulik.  I started reading Dr. Sulik’s Pink Ribbon Blues blog and found the writings of other bloggers like AnneMarie at Chemobrain . . . In the Fog, Nancy Stordahl at Nancy’s Point, and the late Rachel Cheetham Moro and Lisa Bonchek Adams.

I was beginning to rethink where I stood as a Komen supporter and how I felt being part of a cause that wanted to describe all women with breast cancer as fighting warriors donning more pink and winning a war through early detection. It didn’t match with the reality of those 40,000 deaths a year.

In this photo below, my copies of two of these pivotal books are pictured:

It was now three years since my own surgeries and treatment and I was ready to write about some of these mixed feelings about being a woman with breast cancer in the ever-growing and ever-stifling pink ribbon culture that Dr. Sulik and others were writing so effectively about. I am proud to have contributed to the “Pink Ribbon Blues” blog and Nancy’s Point with writings of my own. (There are links to these on my Previously Published page on this blog.)

I was emerging as a breast cancer activist in small ways. There was more to come.  Writing helped me find peace with my own experience. In one of my writings, I composed this line:

“I am not less a woman, just a woman less her breasts.”

After I found personal peace, I wanted to do more to add to a more public debate. Another post awaits on this topic.


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