I took the call in my bedroom. I had been waiting to hear back from the doctor, and my nerves had been taut since my appointment. I had had an inconclusive mammogram, followed by another, then a biopsy, and then an interminable wait for results.
My kids and their friends were playing in the living room just outside the bedroom door, kids whose lives were full of pretend play and drawing and crafts, kids who didn’t ever hear the C word.
I tried to calm myself. The doctor had assured me that this was routine, that second mammograms were sometimes required, and biopsies often came out fine. This is what I told myself while I waited.
I thought back to the biopsy I had had ten years ago. The doctor had found a lump and wanted to check it out. I delayed. Women my age didn’t get cancer. I finally came around and had the biopsy. It was benign and I was relieved. At that time I had been 30. Now I was 40. Surely it was another false alarm. I tried to calm myself.
The precursor to this call had been my most recent checkup, which just happened to be on my birthday. I had mentioned to the doctor that I was feeling some discomfort under my left arm and that I felt a lump there. He thought it would be a good idea to get it checked out and ordered a mammogram. Happy birthday to me.
It wasn’t my first mammogram. I’d had one with the previous scare. It turns out it was lucky I’d had one, because the fact that they had this to compare it to made a small, four millimeter dot stand out. It was probably a little like finding Pluto, just a little less celebratory. And it wasn’t even where I’d found the lump. It was in the other breast, hidden away where it could have just grown and grown, unbeknownst to me. But it didn’t grow. I was one of the lucky ones.
The doctor gave me the news that it was cancer over the phone as I stood alone in my bedroom, the kids playing happily in the next room. The tears came. How would I tell my husband? My parents? I allowed myself tears for mere minutes before I pulled myself together, at least temporarily, for the sake of the kids. It turns out my tears and I would become old friends.
The days and weeks that followed became a blur of doctors visits and pamphlets, assurances that I had time to make decisions and guidance not to wait too long. Get it out. Get it all out, I thought, but the doctor assured me that a lumpectomy would be enough. They advise against bilateral mastectomies these days.
I asked the big question everyone asks in this situation. Why me? I had led a good life. I didn’t drink, really. I tried to eat healthy and exercise. So why me? Breast cancer is something that happened to older women. Here I was, a forty year old mother of four young kids. This wasn’t supposed to happen.
I brought this up to the oncologist one day and asked about the possibility of genetic testing. He said he would check. I waited, and waited, and waited. The year was coming to a close. It had been a doozy, with doctor’s appointments and surgery and radiation. We were well over our deductible, and the genetics test itself was two thousand dollars. On December 29th the nurse called and asked if I could get to the lab. Insurance had approved the test, and she wanted to slide it in before the new year.
The test came back positive for hereditary breast cancer. My ordeal would not be over yet. This increased my risk of recurrence to eighty percent.I worried about my daughter, my sister, my mom, and all of the other women in my family who might share the gene. The results also meant I was at high risk for ovarian cancer. We had more discussions with more doctors, a genetics counselor, and a plastic surgeon. That bilateral mastectomy that I had been advised against was back on the table. We talked about risks. The plastic surgeon said he would go to Vegas with my odds. My breasts and ovaries were ticking time bombs.
I watched Italy win the World Cup as I recovered from a hysterectomy/oopherectomy, and my kids got to experience their mom going through rapid onset menopause. I was 42.
I got my mastectomy between stints of student teaching. I was 43.
My kids were mostly too young to understand. My eldest was an eighth grader who was scheduled to go to D.C. in a month. I worried that I’d mess up his plans. My daughter was in fifth grade. She was old enough to know why I was going into surgery and in her worried state would cling to me for years after. My younger boys were both too little to know, so we kept it from them until fairly recently.
At some point soon after that first fateful phone call, I remember distinctly being at the park with my kids. That day I watched my family as if from a distance and saw myself out of the picture. I was overwhelmed with sadness and the need to be there for them, to watch them grow up, to graduate, to get married, to have children of their own. For the first time in my life the possibility of not being around for that clung to me like an octopus.
I knew in that moment that I would do whatever it took to survive.
It will be twelve years this March.