The vision came to me in the shower. I saw myself standing naked at the mouth of an open cave in front of a reverse halo of blackness. Charise was there too, crouched down to take my picture. I remembered seeing her at that art opening last spring, and the open invitation to do a nude photo shoot. Maybe I should give her a call soon. Then, as these synchronicities tend to happen, she called me the very next day. She excitedly told me how she was just contacted by the Megyn Kelly Today show, and they wanted to feature her work, The Grace Project. She wanted to photograph me the very next week. Not only would I be posing topless for a photo shoot, but would be filmed showing my mastecomied chest— the after effects of breast cancer— to the entire world on NBC. To my own shock and disbelief, the word “yes” tumbled from my mouth!
I thought I would never, EVER pose topless on national TV. But I was never ever going to get breast cancer either, like Viola, the grandma I had never met. She was ravaged by breast cancer and passed away at 58, about a year before I was born. I grew up hearing the myth, “Cancer often skips a generation,” but lived like I had fingers stuffed in my ears—la-la-la-la! Besides, I ate clean organic food, and I went to the gym. I was impervious to breast cancer until I found that lump in my breast when I was 36.
When my 3 year old son scampered over me, his little kick to the chest area drew my attention to this lump, the size of a nickel near my left areola. Even then I refused to think cancer. It must be a swollen lymph node from all the recent dental work, I thought. I was working as an office manager at a small chiropractic office at the time, and the doctor had just decided to drop our medical coverage a month before. It can’t be cancer. I can’t even go to the doctor right now.
Some divine timing took over because this happened to be 2014, the first year that enrollment in insurance marketplaces opened up, thanks to the Affordable Care Act. It would be another 5 months until I successfully navigated the goliath marketplace website, got a referral to a breast surgeon—and faced the fact that all the lymphatic massage and homeopathic medicine in the world wasn’t making this lump go away. In May of 2014 that illusion of cancer invincibility came crashing down with a diagnosis of an aggressive grade 3, stage 1, triple negative breast cancer.
I was the first woman in my line to benefit from the advances in genome mapping, and the first to test positive for the BRCA 1 gene mutation. Now I could make choices knowing that I had an 85% risk of cancer recurrence if I kept any breast tissue, and that I had an elevated risk of a few other cancers. We found out my mom was also BRCA 1+, and she was able to have a prophylactic surgery, hopefully sparing her of ever getting breast cancer. She told me how at 15 years old, she was terrified of her breasts and begged her pediatrician to remove them, even after seeing her mother’s butchered chest. Here she was finally getting her wish at 58, the same age her mother had died.
Charise Isis is half way through her mission to photograph 800 women who have had breast cancer and mastectomies, because that is roughly how many women are diagnosed with breast cancer each day in the U.S. But I couldn’t even consider being photographed when my friend first told me about The Grace Project in August of 2014. I was home nursing my incisions and steeling myself for the chemo treatments ahead. I looked like a Frankenstein Barbie with these hard, immovable implants shoved under my pectoral muscles, fresh red scars forming where my nipples once were and snaking towards my armpits. I was scared and angry at the absurdity of cancer. Some of The Grace Project women were smiling. All of the women in Charise’s photos looked so brave and strong. Would I feel this way someday too?
It would be a lie to portray this as one simple surgery. I had a Port-a-Cath installed and later removed—this would deliver the chemo right into a major artery or vein for distribution throughout the body. Then there was the infection in my breast and the ultrasound guided needle extraction to relieve some pressure, nerve-wrackingly close to my silicone implant. There was the round of IVF with egg retrieval to harvest some of my eggs before the chemical tsunami hit. I also had an augmentation surgery to make my chest more symmetrical. Then right before my 39th birthday I had my ovaries removed to protect against ovarian cancer, another high BRCA 1 risk.
I desperately wanted to move on with my life, but even though my hair grew back and I was rebuilding strength and stamina, there was still this looming cloud of fear and uncertainty. With triple negative cancer, there is this sense of being on high alert for 5 years following a diagnosis. If it comes back, it might do so in a big way, showing up in my bones, brain or organs. But if I can make it to this magic 5 year mark, the statistics show my chances of getting cancer drop back on par with national averages.
Cancerversaries, those dates of diagnosis, surgeries, and first or last treatments are very triggering for a cancer survivor. That’s why I decided to get my chest tattooed on the 2nd anniversary of that July 14th mastectomy. I didn’t go for nipple tattoos either. For me faux nipples were a mocking symbol of pain and loss. To take that date back in a powerful way, my tattoo artist, Miranda Lorberer, helped me create a gorgeous design that would be mine alone. We created a sprawling organic design inspired by the fine linear Indian Mehndi tattoos, that combines spirals and florals and peacock feathers together. As she worked the ink into my skin, she told me how her dad had died of breast cancer when she was in high school. I could feel his presence in the room that day.
I met Charise in person at an art opening last fall. Seeing her beautiful images on large pieces of silk was otherworldly, like skin printed on skin, soft, flowy and feminine. I was still not one of the women in her pictures, but now I had a secret under my shirt. After having my breasts brutalized by surgery, after being poked, prodded and clinicalized by doctors at countless appointments, they were finally mine again. I felt rare and exotic, and wanted to keep my breasts secreted away for the boudoir. I was not ready for the camera.
Then came the call about the Megyn Kelly show. For a brief moment I felt scared to death to be filmed and photographed nude. Then I remembered I had already looked death in the face, and something broke free in me. I coach people every day to make powerful choices, to take meaningful risks. This was not a time for me to hide out. This “yes” was a resounding answer from deep in my cells, calling me forward to some unknowable place. I thought of the woman facing down her surgery, or sitting home hating her surgical drains and icing her chest. Maybe she would see my picture and begin to imagine her place in this world beyond the inky black uncertainty of her cancer diagnosis. Maybe I could offer a little hope when the light is dim.
I prepared for the photo shoot that day with a long bath, thinking about the talking points I wanted to cover while the camera crew filmed us. I made a mental list as I shaved and moisturized. I wanted to mention CharityNavigator, to think beyond pink ephemera when donating money towards cancer causes, and avoid those foundations that absorb a majority of funds towards administrative costs. I wanted to mention that often metastatic cancer research is underfunded—only 2% of funds going towards metastatic research is such a meek sliver of hope on the fundraising level. I wanted to encourage people to support local oncology programs, and individuals living with cancer in their own communities. I hoped to mention my coaching work and my blog, Melissashealinghope.
It was clear the producer had a very specific moment in mind, and my talking points were moot. With the cameras on me I felt raw, exposed, and vulnerable. I wondered how I would look. Who would see this? What would people say? This powerlessness was eerily reminiscent of those weeks around my diagnosis, when my hopes about having a certain surgery or working with a specific doctor were dashed. I was seeking a second opinion at Sloan Kettering when I learned that nipple sparing surgery wasn’t an option for me, that the ducts met in the nipple and could leaving them could lead to a cancer recurrence. Ironic how I could only be shown topless on TV without these little pieces of flesh, my innocent nipples offensive to my body and to the viewing public.
Standing there with the lens focused on me, Charise asked me to close my eyes, to breathe and feel my feet on the ground. Her soothing voice told me to send grounding roots deep down underground, and the camera jitters began to ease. With my eyes on the horizon, the camera crew faded. I thought of Milyn, Champagne Joy, and Karen. Once here, and now gone, leaving inexplicable holes where there used to be life. I thought of my friends still in the grips of their diagnosis, held in this dance between worlds. The cool air on my skin brought me back to the moment, and I looked into the camera. I never want to forget what a miracle it is to be.