Testing, testing
Summer of 2017. I’ll never forget sitting in the doctor’s office at Northwestern Hospital in Chicago where I was having a family meeting with my mom, dad and brother to discuss testing for the BRCA1 gene with our genetic counselor. Still riding my post-graduation high from the University of Michigan at the end of April, and only a few weeks into my first-ever real job working for the global public relations agency Weber Shandwick at the John Hancock tower just blocks away, at 22 years old I was a fresh fish out of water in work and in life.
At the appointment, my family and I were on one side of the desk and the genetic counselor sat facing us on the other. There she walked us through an endless sea of charts and our family tree (read medical history), while explaining the lifetime risk of different cancers associated with BRCA1 mutations. The data was jarring, especially for women (60-75% chance of developing breast cancer and 30-50% of developing ovarian cancer compared to 13% and 1-2% for those without a high-risk mutation - source).
I understood why I was in this room (my dad discovered he was a carrier after finding out that other relatives on his side of the family carried it too), but that didn’t make digesting any of these facts any easier. Next thing I knew my brother and I were getting our blood drawn to determine if we too carried the genetic mutation. “50/50 chance,” our nurse said. The two of us shook hands and wished each other good luck.
Having historically struggled with facing the reality of test results when it came to my exams, assignments, homework (the perfectionist in me could never mentally bear the reality that not every result would be 100% or an A), this 48-hour waiting game for ours took a toll on me mentally and physically. Tick tock, tick tock.
Back at my office a few days later, the notification in my Northwestern MyChart came in. Unlike the waiting (avoiding) game I would play with myself with Wolverine Access when I would be alerted about results in school, at that moment I knew I needed to rip the Band-Aid and open the letter from our counselor. BRCA1 positive. Not the result I was hoping for.
I soon learned my brother was negative, and I would begin this journey on my own (or so I thought).
Hello, New York!
Summer of 2020. Now 25, living in the city of my dreams and working my dream job at Havas, it was time to officially start my preventative care plan (during the peak of the pandemic might I add).
We take off escorting each other to appointments. If one of us experiences a ‘first’ in the process before the other, we become soundboards, emotional support blankets, a safe space to vent. And having our family and extended family and friends always on call cannot be an overlooked good fortune.
While we have similar genes, and are only a few years apart, we currently have different relationship statuses and other health factors that come into play with bigger BRCA1-driven decisions we each may have to (and likely will) make one day. From egg freezing (to protect and prolong our family planning options while we have these rights) and/or exploring preventative double mastectomy surgery (to greatly reduce our lifetime risk of one day being diagnosed with breast cancer) the road of decision making is seemingly endless.
For now, doctor referrals and screenshots of our lab test results flood our text threads, but so do restaurant recommendations and flights for upcoming trips and links to shop outfits for the five zillion weddings we each have on the horizon. It’s all about balance, right?
From the sidelines to the start line
After having trained with a close friend for her first marathon in Chicago, and then going on to watch the New York Marathon this past fall, I started to envision what it could be like when I was out there running the race and not just cheering from the sidelines.
January 2024. I created an Instagram account (@diaryofarunnergirl). Originally intended to be a place to track my process securing a bib (and to track my training) for my first-ever marathon, it quickly turned into an open letter to myself and my followers about the trials and tribulations of my everyday life as a BRCA1 mutation carrier and runner, navigating life, work, doctors appointments one day, one brick, one step at a time. Tick tock, tick tock.
Fast forward, this fall I will be running the 2024 New York City marathon with team Sharsheret, the only national organization supporting Jewish women and families of all backgrounds, facing breast and ovarian cancer – those who are diagnosed and those at high risk (like me, with a BRCA1 gene mutation).
About Jennifer Miller:
Jennifer Miller is an Associate Director at public relations agency Havas Formula, where she supports various integrated communications programs for clients, helping craft and share stories that spotlight their impact on their industry and their communities. As a BRCA1 carrier, Jennifer has found her love for running, writing and women’s health advocacy and is an active member of the Basser Center’s Young Leadership Council. A Chicago-native, Jennifer received her B.A. in English from the University of Michigan in Ann Arbor and has lived in New York City for 5 years and counting. She’ll be tracking her marathon training and sharing the latest on her BRCA1 journey at @diaryofarunnergirl on Instagram.
How can I get involved in the Basser Young Leadership Council?
Learn more about the Young Leadership Council of the Basser Center for BRCA on our website. To learn about how to become involved with the YLC, please contact Carolyn Brown or call 215.573.0550.