I had a solid plan - on January 10, 2023, I would have a prophylactic bilateral mastectomy and DIEP flap reconstruction. My sister-in-law was in town to support my husband and kids. I'd been thinking informally about this surgery since my sister's diagnosis in 2003 confirmed that we were a BRCA1 family. After making the difficult choice in the spring of 2022, I grieved what I was about to lose. My coping mechanism for grief, anxiety, or discomfort is to take action. In the face of losing the breasts that had brought me pride in my appearance, attracted my husband, and fed my children, I started organizing.
The first thing I organized was the dates of my surgeries. Since my surgery was prophylactic but medically necessary, I had the luxury of choosing the dates. My surgeons recommended a breast reduction and lift first to minimize complications and maximize the attractiveness of the outcome. My body would require three months between the reduction/lift and the mastectomy/reconstruction. We were celebrating my parent's 55th wedding anniversary with a family trip to Punta Cana, Dominican Republic, from Christmas to New Year, and I wanted to fully participate. My son would start his collegiate baseball career in March of 2023. I wanted to travel to cheer for his team in person throughout his college and summer seasons. I also wanted to cheer on our daughter in her local high school games. After analyzing all the possibilities, I chose October for the reduction/lift and January 10, 2023, for the mastectomy/reconstruction.
I wondered what I would feel like after the first surgery. There was no way to preserve sensation in my nipples or most of my breasts. Nerves are cut during the surgery, and they don't regenerate. My plastic surgeon did not think the science of the cadaver nerve graft was compelling. Every time I got dressed or undressed, I was reminded that I would not feel the same in January. My breasts got attention from high school onwards. I'm petite at 5'2" with an hourglass figure, and my 34 D/DD breasts made cocktail dresses and lingerie a lot of fun. There was a time when some high school boys thought I stuffed my bra because the tape I used to hold my breasts inside my gymnastics leotard fell out during a competition. I was unwilling to prove otherwise - no freebie peaks from me. It was also thoroughly ridiculous because my breasts were more than large enough for me to never worry about padding or push-up bras that made me look like a porn star.
My breasts did their actual job very well when my children were born. My doctors recommended nursing for at least a year because it provided the best nutrition and benefitted my children's immune systems. There is evidence that nursing for a year reduces breast cancer risk, especially for triple negative, BRCA1 mutation carriers.
"The risk of breast cancer is reduced by 4.3% for every 12 months of breastfeeding; this is in addition to the 7.0% decrease in risk observed for each birth. Breastfeeding reduces the risk of Triple‐Negative Breast Cancer (20%) and in carriers of BRCA1 mutations (22–55%)."
Even though I didn't know if I was BRCA1 positive when each of my sons was born, I thought that the benefits of breastfeeding to me and to them were significant. By the time my daughter was born, I knew I had the mutation. I was fortunate that my breasts produced ample milk for my babies and that when I returned to work, I could pump them to empty within 15 minutes. I was also lucky that my babies easily latched and enjoyed nursing. My mother, sister, and I joked that for all the trouble breasts caused our family, at least they did their job. I wouldn't show them the appreciation they deserved by discarding them in January 2023. Unfortunately, it was them or me, and I had to choose myself.
To manage my emotions, I continued planning. My best friend planned a "Bye-Bye-Boobies" party with my friends to celebrate the girls and thank them for their service. She was also ready to start the meal train with my community to support and nourish my family. My sister-in-law offered to come for the surgery, which would support my husband, children, and me. My mother was planning to come when I was discharged from the hospital. I had the hospital, surgeons, and support team set up.
Mann Tracht, Un Gott Lacht
(People plan and G-d laughs)
Yiddish Proverb
On January 9, 2023, the day before my surgery, the universe threw me a curveball. On January 9, 2023, my day came. I was diagnosed with breast cancer. Stage 2A triple-negative breast cancer showed up on my pre-surgical scan. I'm pretty sure I told the doctor - "you have got to be kidding me." After a few minutes of dismay, I started my transformation into a usually helpful and often irreverent cancer curveball hitter. My goal was a great outcome in the shortest time possible. Again, my instinct for dealing with discomfort or pain is action, and I was swift. It didn't matter if I felt overwhelmed, unqualified, or shocked - it was the cancer curveball. Rather than hit or ground out or hit it weakly, I was going to use my strengths, community, resilience, and experience to swing and hit that curveball and the other off-speed pitches that cancer treatment entails. I was the reluctant batter in the box and wasn't second-guessing my healthcare team - I was an active, informed partner.
Throughout my treatment, there were multiple "off-speed" pitches with different setbacks, changes to the plan, and surprising physiological discoveries. I use the metaphor of a curveball to describe them all. Seven close familial experiences with cancer, 40 years of mental preparation, and 25 years of professional "get stuff done" guided me to what I needed to do to prepare, assess, and swing at the curveballs on my cancer journey. I hit some well, and others were foul balls and strikes. The entire experience of being diagnosed and treated with cancer is a big curveball - unfamiliar, unwelcome, unexpected, and hard. My confidence that I had a good approach, was prepared, knew my strengths, and would be able to swing well at each curveball I saw transformed me into a powerful partner in my treatment.
Surprisingly, I found fun, joy, and love hitting those curveballs.
My cancer is only urgent to me and to the people who love me
Without thinking through an approach to hitting the curveballs that occur throughout treatment, my care would be organized in the easiest way for the system, not the best way for me. Without me executing my approach to the curveball, there will be extra appointments I don't need (radiation therapy and genetic counseling were scheduled for me…and I inquired why before I confidently canceled them) and appointments every day of the week - leaving me little time to be "normal."
These five steps were my checklist for approaching and hitting this curveball. The story has ups, downs, twists, turns, disappointment, and exhilaration. Ultimately, it was a blessing.
TEAMS - Find or build a medical team I trust. Ask what they need to make my personal plan (labs, scans) and when it will be implemented. Then, put the project on a calendar. The team leader is vital because the medical leader is the team manager and determines the treatment plan. As the batter in the box, I materially influenced the direction and speed of the balls I hit.
ORGANIZE - Medical delivery is siloed, and cancer is very cross-functional. Determine the frequency of appointments and work with the schedulers to get everything possible on the same day (with enough time between appointments). Keep the rest of my time cancer-free.
BUDGET/FINANCES - Find out (reading, calling) what is in-network, co-pay, and out-of-network. Prepare to be frustrated and spend extended periods on hold. Find a medical team that is "in-network," as that will save me time, money, and frustration.
ADVOCATE - Ask for what I need - kindly but firmly. Ask who can help, when I should do what thing, and why it is necessary.
CONNECT/SHARE - My team is larger than my medical team - it includes virtually everyone in my life. I told people in waves - immediate family, closest friends, and people who can help assemble the medical team. Then, I needed more friends and perhaps professional associates. Tell people - but do it on my schedule. Be clear about what I do and don't want from people. Let people support me and send me love and prayers.
Cancer is both a curse and a gift. 99% of early-stage breast cancers are fully treatable with no cancer after five (5) years, so welcome the gifts to your life, but give yourself permission and space to feel all the emotions you feel. Then grab, step into the box, and SWING.
Continue the story…
