Story and Illustration by Jenny Lee Fowler
This isn’t our first rodeo. I’ve had breast cancer before. My husband and two children, now 13 and 17, weathered almost a year of surgeries, chemotherapy, radiation and hormone therapy with me when I was first diagnosed almost four years ago. They cared for the caregiver, carried more chores around the house, shaved my head and grappled with the profound vulnerability of having a sick partner and parent.
Then we caught our breath and celebrated clear scans. Cancer was something that we got to look back over our shoulders at for a while. Some days it lurked in my fatigue or in the many follow-up appointments; other days were carefree.
Now it’s back. What’s different this time is that we’ll be living with cancer for the rest of my life. Stage 4 metastatic breast cancer is when the cancer cells have traveled to another place in the body. It’s treatable but not curable. The handful of therapies I take now are designed to try to wipe it out and halt it from progressing.
Over time, the cancer will probably keep adapting and coming back like a high-stakes game of whack-a-mole. The American Cancer Society cites a five-year survival rate for distant stage cancers like mine at 27 percent. The median survival rate is three years. Every year, those numbers edge up just a bit thanks to new medicine that is rewriting how we treat advanced breast cancer, but they’re still very steep odds. I try not to dwell on them. A friend who has been living with bone mets for 10 years says, “Don’t ever let them stamp you with an expiration date!” The truth, for me, is that the precariousness of those numbers also changes everything.
We’re still integrating what my illness means to each of us and to our family as a whole, but much of our family life keeps moving along. The calendar is a jumble of youth Roller Derby practices, injections, AP exams, scans and scout hikes.
Together, we’re learning the arcs of these new treatments, what their side effects ask of us and when we need to ask for help from friends and neighbors.
It’s with them when they’re reading for school, when I retreat for a nap to power back up or when I ask them if they want me to schedule them a ride to school or work if I’ve got a doctor visit.
Every summer the kids go to Camp Lightheart, a free camp for children with a parent who’s had a breast cancer diagnosis. It’s sponsored by Breast Cancer Options and hosted by Omega Institute in the bucolic rolling hills of Dutchess County. They come home brimming with stories and adventures, but the most powerful part is just connecting with other kids who share this common ground.
It can feel overwhelming at times, and I’m becoming more aware of our need to create respite from it and to live our joys alongside it. █
