A few days ago, I was sorting through the mounds of paperwork that had accumulated in my office over the last year- exp of benefits, conference glossy fliers, and pages and pages of notes from every appointment I went to. And then I found, buried at the bottom of a giant stack of folders full of paper, the notebook that I had purchased in between my mammogram and biopsy, on Nov 9, 2017. The notes from my first appointments with cancer doctors.
It struck me to look back and review those notes, just how dismissive those doctors were. I had notes about my symptoms that clearly indicated my metastatic status, and I felt transported back to that place, where I felt small, unknowing, insignificant. To the place where I didn’t feel like I had a say in my treatment or my assessments.
I was also transported, that evening, into a place where I was no longer metastatic- where I felt like I could step into that world again, if only for a few minutes, and envision my life if things had been different if my cancer had been caught earlier. It’s a fantasy for sure since we all know that it’s not the case for me. But what if I had known I was likely to be at risk for all of this? What would I have done with that information?
My guest today, Jessamyn Lopez, is one of my oldest friends- we met in after school care in elementary school, and continued to keep in touch throughout high school, college, and beyond. During all of this, Jessamyn’s father was diagnosed with breast cancer, which later metastasized and caused his death.
After her father’s diagnosis, Jessamyn sought genetic testing and tested positive for the BRCA 2 gene. Jessamyn found herself in a web of tremendously difficult decisions surrounding family planning in her very new marriage, and ultimately choosing to undergo a bilateral prophylactic mastectomy and removal of her fallopian tubes. Jessamyn and I have had innumerable conversations since my diagnosis, and it has always struck me how, when we talk, there is no “before” for either of us- every facet of our lives is now filtered through the lens of this diagnosis, even our experiences prior to cancer. When I found those notes from 18 months ago, it struck me how difficult it was to relive the moments of that understanding of the fundamental changes for every single aspect of my life. I’m not going to compare life with metastatic breast cancer to life with an genetic mutation, because that’s irrelevant for this conversation. What struck me as so connecting with my conversation – and overarching friendship with Jessamyn – is how universal that change, that shift in your life is, and how it shatters your entire worldview. There is universality in that feeling of wishing you could step back into an earlier, or different time, and live in one’s innocence, one’s unknowing, for a little bit longer.