All too often, when our lives turn on a dime, it’s the “what-comes-after” that becomes the challenge. A fall that results in a compound fracture is over in a hot minute. The aftermath – the surgery, medications, rehab, post-op check-ins and follow-up appointments – ends up dominating our lives.
A breast cancer diagnosis is no exception.
Immediately after biopsies confirmed cancer in my right breast, I was referred to the Seattle Cancer Care Alliance. Three weeks later, I had an appointment for a full day of consultations, two more tests and I acquired a support team. I met with an oncologist, a radiologist, the cancer surgeon and, before I left, received pre-op instructions. Two weeks later I met with the plastic surgeon to discuss my reconstruction options, and the following week, I was on the operating table.
Then it got real.
No matter how much time I spent researching breast reconstruction, or how many questions I asked the medical community, nothing prepared me for the absolute weirdness of turning my body into a host for a new breast.
Breast cancer surgery generally requires a sampling of the lymph nodes to determine if the cancer has spread. Since there was no evidence it had, reconstruction was able to start immediately, and I woke from surgery with an expander inserted under the skin where my breast used to be. The expander’s purpose is to create a space, through a series of saline injections, to facilitate an implant.
The expander, a strange-looking plastic oval with a clear center – a port – grows larger with each new dose of saline. Think of a deflated basketball inserted under the skin and, every few weeks, it’s pumped up until it gets to the appropriate size.
Reconstruction for an implant is the same. Fills continue until I’m satisfied with the size. At that point, I have an emerging boob on one side, and a 71-year old breast on the other. Fortunately (if not a bit surprising), the reconstruction process includes updating the remaining original breast to make it match the new one. Symmetry, they call it. So, in addition to being cancer-free, I’m essentially getting a boob job.
“After all you’ve endured, it’s the least we [the medical community] can do,” offered my plastic surgeon.
The entire process – from mastectomy to reconstruction to the tattooed nipple – can take as long as nine months. Nine months of negotiating appointments based on a ferry schedule, shuttle schedule and transportation from wherever I land can feel Herculean at times. More than once, I’ve collapsed into a pool of frustrated tears at the task. “Surely there must be a way to coordinate ferry schedules with shuttle and train schedules!” I shout to no one in particular.
Doctors often point to studies that tell us productive healing requires minimizing stress. I’m more confident than ever that the writers of those studies never tried to negotiate twice-monthly trips to Seattle from a remote island in the Salish Sea!
When I feel overwhelmed (and this journey can definitely feel overwhelming!), I call my breast-cancer surviving sisters for support. I sigh a lot. Sometimes at home, I shout, “This is all just too much!” and scare the crap out of my old cat. I cry, a lot and often at the strangest times. And I get weary. Weary from all the appointments, the changes in my body, with all the tasks involved in tending to the whole damn process.
I know these feelings stem from a combination of many things: grief, anger, utter disbelief, sadness, gratitude and relief. I’m just not used to them. And I wasn’t prepared.
A fellow mastectomy patient and I often compare notes about the process. As she moves toward the final stages of reconstruction, we share observations about the experience and often reach the same conclusion: “We had no idea it would be like this.”
Truthfully, I’m not sure there is a way to prepare: the diagnosis, the surgery, options for reconstruction, the physical and emotional toll is a strange and intense journey.
It is also a journey made easier with love and support, with patience and understanding, with a responsive and skilled medical community and with the knowledge that, in some small way, my experience can help others navigate its weird path.
Despite my love-hate relationship with social media, I’ve shared this journey with friends on Facebook. Recently, I read an entry from a woman I knew in high school in which she shared her breast cancer diagnosis. When I offered her my support and said I was glad she found it early, she replied “It was because of your postings that I went for the mammogram. Thank you for saving my life.”
As we age, many more of us will develop breast cancer. If you’re reconsidering having a mammogram at 65 or 75, don’t hesitate. Whatever the outcome, catching it early can make a world of difference.
Besides, there’s something to be said for a perky pair at 75!
For more information about cancer detection and cures, visit the American Cancer Society at www.cancer.org.