It’s been a year since we last spoke. At this time last year, I was recovering from a surgery to repair a lost expander. I was still in treatment, still making my way through the meandering journey of living through cancer. I am, again, just out of surgery, had hoped to be “flat” by now, but still making my way to the place I’ll feel right in my skin. I am no longer in treatment. I am in a maintenance mode now.
In case you don’t know my story, I’ll summarize, briefly. I was diagnosed at age 43. I was stage 3c, triple positive (ER/PR/HER+) and I carry a chk2 gene trait. I also have a strong family history –my mother and her mother both had breast cancer. I found the tumor in the shower Thanksgiving morning 2015. I’ve had chemotherapy, a double mastectomy with reconstruction, radiation, loss of one expander, several surgeries to correct that loss, an oophorectomy to remove my ovaries, physical therapy to regain range of motion in my arms, and I just recently had a corrective surgery to “explant” the remaining expander and go “flat.”
It’s a little strange being out from underneath it all. The doctor’s appointments are six months apart now. There isn’t as much to manage – the scheduling is easier – the planning more simplistic. I was a “double D” before any of this started – “flat” takes some getting used to.
I don’t like to look at myself. I don’t feel like myself. My scars are tender and prominent. They are asymmetrical. They change my landscape. On the “cancer side” of my body my scars touch my rib cage. I don’t have any feeling on the back of my right arm. I don’t sweat from my armpit. I don’t grow underarm hair anymore. I’m concave. My clothes fall awkwardly off to the side. I have given up v-necks.
On my “non cancer side” I have just had the expander removed, and much of the extra skin taken off. The expander held space for an implant. But after radiation treatment, my body didn’t like the expander inside my empty breast cavity and last September they had to take the right side expander out. Earlier this spring I made plans with my surgical team to take the left side off and live without breast mounds. Flat. I gave myself six months to get used to the idea before the actual appointment. It wasn’t as intense, emotionally, as it was to embrace the double mastectomy, but I did mourn the loss. It was similar – not as scary – but strangely just as sad.
Reconstruction was not for me. I thought it would make me feel better to wake up from the mastectomy still having “something” there. Turns out it felt foreign. It’s hard to know if I’d feel the same if my body hadn’t rejected the expander. But for me, from the beginning, I didn’t feel right.
I gave myself time before this last “explant” surgery to come to terms with going flat. Breasts? Or no breasts? They are actually not breasts at all. Just mounds. Flesh mounds with saline bags under them. My pectoral muscles contorted them. They swished around when I flipped over in bed. There aren’t any nipples. They aren’t really breasts. My decision was made.
I found all sorts of support groups. Social media is amazing for its ability to connect strangers and distribute information. There are dozens of groups on Facebook for women who don’t go through reconstruction. (Or, like me, have trouble along the way and choose to reverse it.) “Flat and Fabulous” is my favorite. “Sisters with Scars” is another. People post pictures of themselves, ask questions, lend support and offer encouragement. They celebrate milestones and new clothing purchases, share treatment hurdles and question their surgery choices. It’s an open forum you can eavesdrop or participate. I like having access to it. Makes my reality seem less unusual; I’m definitely not alone.
So here I am – on the other side of it all. Processing. And, for what feels like the first time, really thinking about all that’s happened to me – to my body – to my life – with tears streaming down my face. I am still shaking my head in disbelief that it happened to me. I can’t believe another year has past and that I’m still recovering.
Maybe I always will be. And maybe that’s not a bad thing.
Married, mother of 3.