It is October so you’re probably deeply AWARE since you know, love, are, or lost someone with breast cancer. Some of us are born with extraordinary risk for the disease. As a previvor, previving means you learn about your predisposition and take action. I have a rare genetic mutation called BRCA2 and chose preventive surgeries 13 years ago to drastically reduce my risk. Today I’m glancing back at a bittersweet chapter and sharing details not shared before.
Sacred Ordinariness & a BRCA2 Previvor
BRCA2 Diagnosis
I have two sisters, and two of us tested positive for BRCA2 (.2 to .3% of population) shortly after my mom was diagnosed with BC in 2012. BRCA2 can significantly increase risk for ovarian, breast, and other cancers.
Breast and ovarian cancer are common on both sides of my family, and my mom’s sister passed away from it at 28. My mom’s breast cancer spread to her lymph nodes then colon. She is amazing and aggressively fights it daily. Held together with grace, prayer, Pepsi, and duct tape, her warrior spirit is alive. I wish I had inherited more of it! We have all learned there isn’t a singular way to survive, previve, or thrive with cancer.
Previving BC
Initially, I thought close monitoring suited me best as someone already managing autoimmune issues and Crohn’s.
While grateful for preventive surgical options, it was radical new territory 13 years ago. I was done having children but concerned about coping with menopause. It was a busy time of career building, parenting a rebellious teen, and paying tuition for another in college. But we were also watching the reality of my mom’s deterioration.
On my 47th birthday, my sister Lisa and I were at her side in Arizona, singing a silly song as our sister Jo shaved her remaining hair. When life turns this serious, when suffering arrives, the desire for the beauty of an ordinary day somehow grows profound.
Preventive Surgeries for BRCA2
After medical consults, soul searching, and a deep dive into research, I changed my mind about only monitoring. In 2013, both of us took a more aggressive approach, opting for total hysterectomies with bilateral salpingo-oophorectomy (BSO), prophylactic bilateral mastectomies (PBM), and breast reconstruction.
We knew it would all be life changing and with God, we would stumble forward together. While we are best friends and look like twins, we’re different.
She is more extroverted with strong executive skills whereas I’m more of an artist who requires sufficient solitude. We made radical previvor decisions before the term existed and before Angelina Jolie was all over the news.
As we began joining each other for one surgery after the next with all of the same doctors, our cosmetic surgeon and his publicist wanted us to do press.
Going Public Vs. Staying Under Radar
My sister is less private and was on board, unafraid of the visibility and celebrity. But I had deleted my social media apps three years prior and lived untethered from social media madness. I liked my anonymity and the joy of not knowing when a friend of a friend on Facebook was consuming Peanut M&Ms.
I knew stories about us in the press would appeal to the public, but could we control the spin? Would our previvor choices and twinning photos be used for marketing? Could we discuss alternative previvor options? It felt like a lot of responsibility at a time we were recovering physically and adjusting to menopause woes. Publicists, pharmaceutical companies, television shows, and ambitious Chicago practices probably had much to gain as Angelina’s story blew up everywhere and the whole world learned about genetic mutation.
I was ready for normalcy more than celebrity. There was also a private matter I wasn’t ready to share in the press. Since I knew we would be interviewed and likely invited to news and talk shows (it was 2013!), I felt vulnerable about the sensationalism. Two charismatic, fit, vibrant, telegenic 40ish blonde sisters who appear to be twins talking BRCA, boobs, health, and empowerment with their young gorgeous surgeons…salacious stuff.
It was a sexy scientific story, and I was getting popular online in my own way at the time writing about interiors and lifestyle. But I was living a quiet life with the sacred ordinariness I needed.
Same Choice, Different Procedures
I knew at some point the discussion would turn to why the sisters needed different surgical procedures, and I felt shy about revealing the reason publicly. Almost exactly one year before my nipple-sparing PBM with reconstruction, I was wheeled into surgery (in a room above Bloomingdale’s with a fabulous view of the Waldorf Astoria Chicago!) for breast augmentation. This irony adds to the salacious factor, yes? It was a lovely boob job to enjoy for just a few months before it was traded for reconstruction surgery. Fortunately, it enabled me to have a mastectomy with reconstruction in one major surgery rather than multiple procedures.
Wait, Michele, are you saying you got a boob job in 2012 then had a mastectomy and reconstruction in 2013? Yep. For my PBM, the surgeons used the existing incision scar under my nipple, exchanged implants in the already there pocket, and because I’m thin, required cadaver skin to create a new silhouette. They did a fabulous job. Working as a team, the meticulous work they thought might take four hours actually took eight. At one dramatic moment, my cosmetic surgeon demo’ed my boobs and started over, running out of skin (a supply was feverishly delivered). It’s extraordinary. How do they do pull off this artistry? I honestly have no clue.
Recovering from Bilateral Mastectomy
Those first days of recovery were the devil and colored by legendary psychedelic trips of a lifetime, but within 10 days I flew to San Diego. I still can’t believe I made that trip since the nipple area of one of my breasts was so infected that a lot of the tissue turned black and died. I remember FaceTiming my cosmetic surgeon to show him the gruesome mess and for clearance to travel, and he may have said that’s really gross, Michele. Hahahaha. He made me promise to dress the wound properly but let me go.
My sister’s reconstruction journey was trickier since she had not opted for the clairvoyant boob job primer pockets. 🙂 She required multiple surgeries and a lot of patience. After her mastectomy, expanders were placed to stretch her skin for future implants. Months of discomfort, appointments, and inconvenience followed. She also needed corrective surgeries for painful scarring (incisions made under the fold, not near the nipple like mine), unsafe implants, and fat grafting.
Details about our varied journeys and the ironic boob job were sure to generate extra interest in the mini-Barbie BRCA twins with bodies by Mattel. We sensed our story could be profitable to certain players, but the cost of becoming a sensation to empower others…felt exhausting.
There’s No PERFECT Previvor Journey
As we recovered from the breast stuff, menopause issues including mood, ocular migraine, and skin problems surfaced. There were moments I doubted the choices made. In fact, I’m still unsure if it was okay to have the nipple sparing mastectomy. Our breast and cosmetic surgeons pushed us to take their advice and leave the nipples. Since all sensation was lost, I felt the best choice was to get rid of them to wipe out any cancer risk. I looked into 3-D nipple tattoos and thought it could be an artful option.
Ultimately, I was compelled to comply with their advice because I didn’t want their commitment to the aesthetic reconstruction compromised. My own dang vanity shaped my choice since I had already requested a cancer-less, buoyant bosom as naturally youthful as Kristy McNichol’s (circa 1978). Psst. Not long ago, I still couldn’t talk my cosmetic surgeon into amputating those nips!
Faith is the Secret Sauce
As I confess all of this, I am humbled remembering how easily in my 40s I went blind to the supreme blessing and miracle of previving, of preventing breast cancer. The journey to previve is not about transactions, it’s about grace. We don’t deserve compensation for the loss of our real breasts. I am not owed anything! Lowered cancer risk and modern medicine are precious gems. My previvor journey continues with letting go of ego and cultural definitions of wellth, aging, and beauty. It prospers with prayer and spiritual practice built into my days to expand in faith and serve from hidden wholeness in the soul.
Here’s James Finley, one of my favorite mystic teachers who warms me to the core.
These BRCA2 reflections remind me to savor the beauty of sacred ordinariness–just ordinary days without too much pain or fear of a necrotizing soft tissue infection or acute blindness from an ocular migraine. The sacred ordinary finds me whenever I am willing to give in and go soft. When I choose to see my life as a miraculous gift and love as the point. When I remember how the divine spark inside me is that same divine in you. Thank you for reading this mix of ordinary and extraordinary with tenderness.
I independently selected products in this post—if you buy from one of my links, I may earn a commission.
Peace to you right where you are.
-michele
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