Even though I had a 50/50 chance of carrying the BRACA1 gene (the marker that predispositions you to be a high risk for breast and ovarian cancer), I still had hope I would not meet the same fate as two of my sisters who had developed breast cancer. My optimism couldn’t quite process what the genetic counselor was saying as she opened my file and kindly stated, “Barb, there is no way to sugar coat this, I don’t have good news.” She went on to explain my risk for breast cancer was a staggering 85% before the age of 65 while developing ovarian cancer was 40 times more likely. Staring at the stark white wall in the clinic’s cramped conference room, I slowly came to the realization that I too could have chemotherapy in my future.
It was the fall of 2015 and most recently another sister had just been diagnosed with ovarian cancer. My mind went blank as the counselor outlined my crappy options (1). Every 6 months, have either an MRI or a mammogram. I imagined a life where every six months I would hold my breath till I got an all clear). (2). Prophylactic mastectomy of both breasts and optional reconstruction. 3) Remove my ovaries (oophorectomy) which could reduce the risk of breast cancer and plunge me into instant menopause. 4) Both 2 and 3.
Today on the other side of that decision, I am grateful for the support I received to go forward with a prophylactic mastectomy and oophorectomy; grateful my risk of cancer is now significantly reduced. I don’t regret my decision. That being said, I couldn’t have predicted how I would feel emotionally after lopping off an intimate part of my body. My original 50 year old breasts gave me sexual pleasure, sexual identity and once provided nourishment for my three babies.
I was convinced after surgical teams reconstructed my breasts, I would feel as if nothing had changed (kind of like a home restoration project). I would still feel sexual and sexy inside and out.
February 2016, I had my ovaries removed and the following February 2017 a double mastectomy. What followed was a six month process of slowly preparing my chest to accept saline-filled implants under my pectoral muscles. Every two weeks, I would go to the clinic to have the muscle expanders filled. This action slowly opened up a pocket in my chest for the plastic surgeon to eventually put in permanent implants. By June 2017, my body was ready for the exchange of the rock hard, pointy expanders to my current softer breast implants.
Every day after those two surgeries, I remained hopeful that one day I would feel complete and feel like my old self. What I didn’t count on, was having no feeling in my breasts. The plastic surgeon told me during prior counsel that sensation would be diminished. I was prepared for less sensation but not complete elimination. My breasts felt like my face did after I had four wisdom teeth removed, numb and cold. The implants were foreigners, awkward passengers on my chest. In addition, where my nipples used to be were long red scars. Every day I would look in the mirror and think, ‘”minus signs, makes sense”.
Next on my reconstruction agenda, were nipples to complete the “nothing happened” look and fat grafting (yes, it is as barbaric as it sounds). My surgeon created new nipples by cutting my skin and folding the tissue together like origami. I was unhappy with the result; the new nipples were flat and barely protruded. I felt defeated by my outward look and how I felt about my body. Was I betraying and ignoring the reality of how having the mastectomy changed me? Was I trying to recreate something that was forever lost?
In October of 2017, I discovered a small niche of women who were taking a different approach to reconstruction. Instead of fighting to recreate what was lost, they embraced and opted for beautiful tattoo art to cover the scars. Having never had art ink on my body, I was both nervous and jazzed about the possibilities.
Rejecting the idea of complete reconstruction, and embracing my body as it had become, seemed empowering. It resonated with a need to recreate the new me. I hired a talented tattoo artist (Alissa Waters—Shade Med) who specializes in mastectomy tattoos and scar cover up. Together, over a period of several months we designed two large tattoos of prairie flowers to enhance and beautify my foobs (fake boobs).
After living with the tattoos, I started to feel differently about my breasts and mulled over new feelings and questions. Why are breasts sexualized? What makes a woman's breast sexy? My breasts no longer give me sexual pleasure, so why did others have to think of them as signposts of my sexuality? I began to wonder why men can walk around shirtless while it is socially inappropriate for women to do the same. These questions gave me the idea for a writing/art-photography project.
I wanted to test the freedom of being shirtless in public and have a lasting rebel memory. This is when, at the suggestion of fellow Fox and artist, Mallory Shotwell, I decided to hire local award winning Madison photographer Maureen Cassidy to bring my vision to life. Maureen was enthusiastic and gave me the confidence I needed to be brave and fearless (and as you know, she doesn’t give a shit about existing social norms surrounding body-shaming and conventional standards for what is considered sexy.)
I didn’t do the shoot to feel sexy but rather to challenge sexualizing narratives about women’s bodies. We, as women, should get to decide when we want to be sexy and sexual. Sometimes we want to feel sensual and at other times we want to be seen and heard as human beings without the trappings of a sexualized culture and its suffocating social norms.
On this day in October 2020, I was nervous but determined to overcome fear and take my power back. Instead of feeling like someone who was unlucky to have a genetic marker for cancer, I wanted the experience of being half naked and free. I had an idea to stand on the boarded up and graffiti covered mantle that previously held the statue of Forward (a sometimes a historical symbol of women empowerment that was torn down in the wake of BLM protests). I wanted to have the imposing Wisconsin State Capitol at my back representing government, law, institutions and the construct of society that defines women and confidently look down State Street into the possibilities of a changed world for my gender. In that moment, when I felt the crisp fall air flow past my skin, I was more than my body. I was changed, not reconstructed because I realized I was never broken.
I am currently working on writing the expanded story of my journey and I am happy to connect with anyone who wants to share thoughts about or ask questions around prophylactic mastectomy, loss and the artistic expression of these themes through photography or writing.
Much thanks to the people who made this expression of emotion and thought possible: Photographers and artists Mallory Shotwell and Maureen Cassidy and tattoo artist Alissa Waters.
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