After chemotherapy for me, usually before any additional treatment for everyone else…there is the dreaded decision of all decisions…and its so personal and complex: lumpectomy with radiation or mastectomy, and if mastectomy then unilateral or bilateral? Reconstruction or not: immediate versus delayed? Use my own body as the reconstructive material or implants? Saline or silicone implants? Because I am a surgeon and have performed these operations along with many others, I have a morbid bank of solutions in my head for every operation I personally may undergo. For me, the diagnosis of breast cancer was a quick decision tree to bilateral mastectomy with immediate reconstruction with silicone implants (under the pectoralis muscles; although above them is gaining in popularity). And that is how I approached my surgery: very analytical and filled with medical jargon to separate me from the impending emotional crash that had I been honest with myself, was inevitable.
On September 14th, I had both my breasts removed and a few lymph nodes removed from under my arm to check for the spread of cancer (sentinel lymph node biopsy). I also had my tissue expanders placed at this initial surgery. My plastic surgeon and I had discussed immediate implant placement, but I was going to have radiation and was a high infection risk already, so tissue expanders were my best bet. I woke up with the expected two drains and a surgical bra filled with padding. I was afraid to look myself, but did peek when the surgical resident came for my post-operative wound check…I don’t remember if I saw anything. What I do remember, is I had a room full of friends and when my husband walked in with our daughter, he asked if I had anything to get off my chest. Whether it was the anesthesia, the pain meds, the adrenaline or a combination…he and I laughed probably a little too much given the situation while everyone else fell into a quiet hush. At least it kept me from crying.
The next morning, we went home and that was that…only it wasn’t. I looked in the mirror every morning, every night and whenever I had to empty my drains. There I was, a chemo bloated shell of myself with peach fuzz for hair and black stitches across my chest where my breasts used to be. I felt horrific…I felt mutilated…and then I had a friend come to visit. A friend also with breast cancer and going through chemotherapy before surgery. And somehow…I worked up the courage to let her see. And her acceptance, in words and facial expressions, allowed me to accept myself in that moment. Later that night, I would cry myself to sleep for all that I had lost.
I thought I was handling it, and then came the call: one of the lymph nodes from under my arm had active cancer in it, despite the chemotherapy. Not only was it active, it was aggressive and had broken through the walls of the lymph nodes to form twin tumors hugging the full lymph node and the words extracapsular extension and lymphovascular invasion floated through the phone. A formal axillary dissection was in my future and we did it the very next Monday, September 25th. We spent the four days between getting the pathology results and surgery perseverating on how long I might have to live and crying a lot. The only positive was that my surgical drains were removed during surgery, and I only woke up with one this time.
Pathology was not what I expected: a total of 55 lymph nodes removed during both surgeries (hell I didn’t even know you had that many under your arm) and 3 were positive for cancer with spread outside the lymph node into the surrounding fat. 3 out of 55 seems pretty reasonable except this is after chemotherapy…there shouldn’t be any. So now comes the question of more chemotherapy (different type) or hormonal therapy or a combination or what? Turns out there was a lot of discussion about this very question behind closed doors and at tumor board to which I was not privy. Then…we caught a break…my Her2 status, which had been equivocal all 3 times it was checked, came back positive in the lymph node cancer. That meant we had a targeted agent…Herceptin…to attempt to contain if not eradicate any cancer cells which may have spread around my body. In addition to this, my cancer was strongly estrogen and progesterone positive, so we could use hormonal therapy too. Being triple positive should have helped me calm down, but I couldn’t help myself…I started planning for a life for my daughter and husband which wouldn’t include me and what that would look like. Then, I started arguing with my husband about how everything needed to change, when change was the last thing my family needed at the moment.
I woke up, I emptied my drain, I bathed and carefully patted myself dry, dressed and made it through another day on the outside, all the while screaming bloody murder on the inside. I felt isolated and alone in my own home and body, despite all my friends and daily calls with my mother. I did this day after day, until the drain was removed when it clotted off. And then I did everything but empty my drain, going through life numb, like my breast mounds and underarm.
And then, true to form, my left breast mound turned bright red…cellulitis and another hospital admission for IV antibiotics. But that’s a story for another day…..