Previvor

by Ellen Nightingale



Thirteen years ago today, I had a surgery that changed the trajectory of my life. That sounds like a pretty bold statement, but my surgery was just as bold, as I was part of a new frontier of people known as “previvors.”


What's a Previvor?


The origin of the word previvor came into the lexicon coincidentally around the same time that I became one. A previvor is someone who has an elevated predisposition to being diagnosed with cancer due to a risk running through their family. The term is meant to explain how many of these people feel about having a higher chance of developing cancer, and the struggles they go through to navigate this distinction.


For contextual reference, I tested positive for the BRCA 2 genetic mutation years before Angelina Jolie was on the cover of Time magazine which coined the term the “Angelina Effect” and put words like “previvor” and “prophylactic mastectomy” on the map.


A previvor is someone who has an elevated predisposition to being diagnosed with cancer due to a risk running through their family.

To understand what went into my decision to remove my healthy breasts requires understanding my circumstances and life stage.


Shortly after I tested positive for the BRCA 2 mutation at 31 years old, my doctor called with bad news right before Christmas eve in 2008. My baseline mammogram and MRI which was now part of my new course of surveillance every six months, revealed a “suspicious malignancy.”


I did not fear death...I feared never becoming a mother in the likelihood that chemotherapy would take away my fertility.

I was somewhat of a newlywed but not yet a mother myself, and had watched my own mother battle Stage 3C ovarian cancer less than two years before in the thick of planning my wedding. Watching her respond well to chemo (being an outlier having 7 more years until her recurrence in 2013, and ultimately living 14 years past her diagnosis), I did not fear death. Instead, I feared never becoming a mother in the likelihood that chemotherapy would take away my fertility.


I felt like a “sitting duck” waiting for the other shoe to drop doing surveillance alone. Women with a BRCA 2 mutation have over a 70% chance of having cancer in their lifetimes. My mother battled early stage breast cancer during my senior year of high school. She was 41 years old, and her treatment sent her into menopause. Considering I was 10 years shy of her age of diagnosis, I realized time was essential to make critical decisions.


I lost my breasts prior to motherhood, never knowing the sensation of my babies latching on to nurse, but knowing this decision brought my children into this world.

In essence, many women lose their breasts when they become mothers to feed their babies. Their breasts never come back to the perkiness of pre-baby days. I lost my breasts prior to motherhood, never knowing the sensation of my babies latching on to nurse, but knowing this decision brought my children into this world. I was crystal clear that being a mother was part of my life purpose, and I’d do whatever it took to make that happen. Losing my breasts feels like a small sacrifice.


Scan-xious


What followed my first suspicious malignancy were several other suspicious malignancies and more biopsies and breast MRIs in the months that followed. Surveillance began to feel like a part-time job of going to doctor’s appointments where I was constantly “scan-xious” (a term from my friend who had her own cancer journey about the anxious feeling every time a previvor/survivor goes in for routine cancer testing). And while I really wanted to start a family, each month of scans pushed that dream back further.


And then I attended a Facing Our Risk Cancer Empowered conference with two of my cousins who also shared my genetic mutation; the three of us at different life stages. One cousin was married with teenagers, and she had her recommended surgeries in her late 40s. And then my other cousin was a few years older than me but single in the city, and whispered to me upon our arrival that if any person at the conference told her she should cut off her breasts she’d bite their head off.


I began to wrap my brain around which surgery I wanted, meeting other women at the conference who pulled me into the bathroom and showed me their new breasts. In fact, one of the most beneficial events for me was a “Show and Tell” cocktail party with a New Orleans theme. Women who had different surgeries were topless in an effort to share their experience so it didn’t feel so scary, and because there was an assortment of surgeries to choose from as a previvor.


A One-Step Nipple Sparing


I met several plastic surgeons and women and asked lots of detailed questions about their experience versus my initial desire to just “cut them off” when I heard the news about each suspicious malignancy in the previous months. I ultimately decided on a newer procedure at that time called a one-step nipple sparing, which eliminated the need for expanders and nipple tattoos, having met several women who raved about their team of doctors in Westchester, NY which was just an hour from my home. My plastic surgeon, Dr. Andrew Salzberg was one of the doctors the women I met at the conference raved about showing me their new breasts, or “foobies” a term coined by many women after breast reconstruction for “fake boobs” which looked amazing. I immediately liked Dr. Salzberg, but we disagreed on one big thing.


“I want to be a B,” I told him remembering a monologue I used to audition for a part in my church play in high school, the Sound of Music (the irony being I was a DD in bra size and reading a monologue of a flat-chested girl wanting to be a B). Needless to say, God has a sense of humor and I was cast as the angry nun.


“Women come to me every day wanting your size breasts,” the doctor told me.


“I don’t care what other women want,” I said thinking about the years I competed as a runner wearing double sports bras thinking how much faster I would be without my breasts holding me back, or the joy of putting on a sundress without a bra.


“I would recommend a C,” he said.


“B plus or minus – whatever is closer to a C,” I said and we shook hands, but he made me a C anyway.

The week before my planned surgery on 7/16/09, I called a childhood friend who was a good photographer and asked her if she’d take some photos of me in her Greenwich Village studio thinking I might want to remember what my breasts looked like for posterity one day. This time also marked the beginning of receiving energy healing from another friend who worked with me for several months as I learned to meditate while taking baths with apple cider vinegar and Epsom salt, and open my mind, body, and soul in ways that went beyond my medical treatment.


My Surgery


Then came my surgery in a local community hospital at the Ashikari Breast Center in Dobbs Ferry, NY. My then husband drove me up the Garden State Parkway and over the Hudson River that morning before dawn, and my mother was there when I got out of surgery and was completely disoriented. I woke up with drains which contained all kinds of fluid under my breasts that had to remain for the next week before getting removed.


There were gifts from so many friends and family. I had been on a yearlong faith journey with a group of women from my church, and one knit a prayer quilt for me and they had all gathered to pray over me the night before my surgery. My work wife Meg made me a mix of songs that I listened to on the drive to the hospital and as I began driving again several weeks later. Another speech-pathologist at work had given me the book, “All I Needed to Know I Learned from Judy Blume'' which thoroughly entertained me while I recovered. Friends sent flowers and cards and called. My aunt came over with Panera for lunch and Jodi Piccoult’s newest books.


My bestie from college who was in fashion PR went through her wardrobe and sent me every button down blouse and loose dress of hers to borrow that she knew would look good on me so I could still feel somewhat attractive while recuperating with my drains. My cousin who had the surgeries before me sent a women’s bible that I started to read and reflect on. My other aunt who had breast cancer the decade before and had recovered in my childhood bedroom while I was away that summer in the Outer Banks in between graduating college and starting life in the “real world” at a brokerage firm gave me her house in the Hamptons for a few days to recover and rest. My aunt became a dog mom shortly after her week spent in my bedroom where my dog Journey was her healing companion on my bed, and then did the same for me 10 years later.


Post-Surgery


I had a seven-week medical leave post-surgery which was life changing for a woman who didn’t yet know how to slow down and pause. I share the not so funny joke that when you are looking forward to going on a medical leave for a mastectomy, that is a true sign of burnout. From years of over-doing, wanting to be a super-star speech therapist but growing frustrated that the only way to more income was more billable hours, I knew things had to change. I started writing fiction and taking writing classes in the city. Then I started taking interior design classes at a community college in the evenings. And then there was another business venture that led me down a rabbit hole of personal growth and transformation which is how I ended up testing for my mutation. It was something I had put off as a to-do in the future while I overextended myself in my day to day life.


During this time of rest and essential self-care, I went up to Rhinebeck, NY, and attended two retreats at the Omega Institute. One retreat was in Creating the Work You Love and the other retreat was more technical in nature as I was playing around with creating a “Heal Your Own Burnout” workshop although I didn’t quite know how to put all of the lessons into a curriculum as I was just learning to implement these shifts into my own life. I met a man on that retreat who was a brand manager, and he gave me one piece of writing advice that I took with me, “Every writer needs a blog.”


Choose Your Own Journey


And so I went home and started blogging about all of the things that I felt were left unspoken after my journey through a mastectomy which then led to my journey to become a mother the following year and my journey to ultimately leave my job and move across the country and become a mother again and create life on my own terms. That’s essentially how my first blog Choose Your Own Journey was born.


During those years, I learned how to drop into the vulnerable and authentic parts of myself as a writer and build my writing muscles with consistency, practice, and allowing myself to be seen. And even though writing about “foobies” (fake boobies) is no longer the story that feels like the most urgent or motivating for me to share in my present life, it’s still a part of my journey. And I wouldn’t change any of it knowing all of the gifts that came with my mutation which have led me to where I am today.