In 2014, I was a patient care technician at a local hospital; ironically, on the very floor that provided post-operative care for breast cancer surgery. I had made a career change to become a nurse a couple years prior and was hoping to graduate from nursing school and continue on this floor. In June of that year, at the age of 38, I noticed something in my breast self-exam and made an appointment for a mammogram. Although my youngest sister, Lisa, had died of metastatic breast cancer (MBC) in July of 2010, at the age of 31, I wasn’t panicked. Lisa had tested for the negative BRCA gene. I was considered “high risk” and had periodic mammograms that were normal. But as I put two and two together, the hair on the back of my neck stood up.
I was able to schedule my mammogram for the next day. I still wasn’t nervous; I remember parking far away from the door in case someone else needed a closer spot. After the mammogram, an area of concern on the right breast was biopsied on-site. By this time, I was in shock. I asked the radiologist whether this was the same type of breast cancer my sister had. I don’t remember the rest of the conversation except that I was told to find a surgeon. A nurse let me out of a discrete door and I stumbled to my car and called my sister Amy.
Back at work, I called my Advisor at MCC in a whisper from the break room and asked for help; I had no idea where to begin. Help arrived in the form of nursing staff, who had recommendations based on their own family members’ treatment. Their support meant everything to me. I found a surgeon and scheduled an appointment. Afterward, I knew I didn’t need to look any further; it was a good fit. Due to my family history, I chose breast removal and reconstruction on both sides. It was not a hard decision for me. My right lymph nodes were found to be involved and were removed. Due to the size of the lesions, I would undergo radiation after IV chemotherapy. Because my cancer was estrogen-receptor positive, my maintenance hormonal therapy was Tamoxifen.
Four years later, I had found ambulatory position in a different health system. I was “talking” to a co-worker before clinic, and she noticed that I could no longer respond verbally. I was wheeled down the hall to the emergency room for a possible stroke or any number of concerns. After a battery of imaging and other testing, we learned that my breast cancer had advanced to my brain. The relative good news was that the imaging did not show further spread below the neck. I underwent gamma knife radiation in September of 2018 and began taking anti-seizure medication and oral chemotherapy. I tolerated my medications well, and there were no further seizures for about a year. But then, as the cells in and around my brain lesions died, pressure began to build. My medication regimen continued to change to address this. Then, in November of 2019, I went to the grocery store to pick up some bagels. I woke up four days later in the ICU. Again my medication regimen was adjusted, but a craniotomy (surgery) to remove the necrotic (dead) cells that were causing the swelling brought more stability. I continue to be monitored closely.
My challenges have evolved over time, but the biggest challenge for me currently has been the diagnosis of epilepsy coincident with my metastatic diagnosis. To be honest, I’ve only begun to accept it. And by accept I mean it continues to frustrate me on a daily basis. My brain is funny now. A source of comedy and difficult to explain or understand. I stumble with numbers, letters, colors – everything you learned in kindergarten. I know the words, but they spill out of my mouth too fast before I find the right ones.
Humility helps me cope. At a recent Common Ground meeting, I said that I often feel that living with MBC is like taking one forward and two steps back. For me, coping is not a static concept. On a good day, I focus on what I can do. I’m optimistic. I exercise to strengthen my heart, my bones, my balance, and my mind. I’m my version of productive or creative. But there are other days when all I can do is nap and/or binge-watch a television dramedy series. I try to take it all in stride.
A focus on my mental health has helped. When I lost Lisa, I enrolled in grief counseling as part of my employer’s Employee Assistance Program. After the dust settled from my diagnosis, I asked for a referral to mental health services. Completing the basic surveys helped me realize that I did need some help and I got it. Engaging in ten minutes of consistent, daily meditation has helped in real ways. I also use medication: antidepressants and medical cannabis; I am fully transparent with my medical team.
Having been a family member and primary caregiver during my sister’s illness, I have a fondness for well-meaning family and friends. When Lisa passed, it took six months for me to realize that I wanted to be around my family and know them. That meant moving from New York City back to Rochester. I have a lot of support from my family. I can’t begin to explain how much my husband and my sister Amy do for me on a daily basis, so all I will say here is I couldn’t do it without them.
Holly and the Coalition have been there for me too, from the beginning. I was steeped in personal and professional experience and I still had no idea how helpful the Coalition could be. I’ve participated in several programs: the Young Survivor Gathering (where no one cares whether you have hair or not); Gentle Yoga classes; the Voices and Vision writing group and now the Common Ground group for those living with metastatic disease. I can no longer work, but I can put my energy towards participating in Advocacy and Research committees at the BCC.
I am living proof that my MBC story is not my sister’s and it’s not anyone else’s. It took years, but I’ve learned how to work on my inner dialogue so it’s more in line with what I might tell my sister or a friend, not my worst enemy. This experience, over the now dozen years since I was first diagnosed, has profoundly changed me. But it might be more accurate to say that it has distilled my personality and taught me what matters. When I lost my voice, I discovered that my voice really matters to me. I am still unpacking what that means: sharing my story, speaking up for those who can’t, and (re)learning what I need to know.