It seems like social media is swamped with people evaluating and remembering the last decade. It is after all the decade that brought us high waisted jeans, Game of Thrones, and mounting authoritarianism. What a time to be alive. My friends and family all seem to be posting their own milestones from the 2010s. Things like: I finally moved to Los Angeles! I had a baby! I married the woman of my dreams! I got a divorce and started a new life! I got a new job! I went to Peru!
When I think about my milestones for the last decade, I remember good things too. I got my dream job. I moved to a beautiful city. I made new friends. I traveled. I class climbed–no small feat when you come from ten generations of farmers and mill workers. But those events are overshadowed by less positive memories.
The 2010s were a decade of cancer. My father was diagnosed with lung cancer. He endured five years of treatment before he passed away. The same year my mother in law died. Lymphoma. My father in law died from leukemia, skin cancer, and medical malpractice. My aunt was diagnosed with breast cancer. My uncle with inoperable brain cancer. My brother with melanoma. One holiday season–the first without my dad–both of my cats died within a week of each other, one of them from cancer. A dear friend was diagnosed with metastatic breast cancer. I went to the women’s march in Washington DC with a woman I met at a local FORCE meeting; months later she died of metastatic breast cancer.
And BRCA. I got my deleterious test results in summer 2012. I told myself that there was no reason to make any permanent decisions. My cancer risk wouldn’t rise precipitously for about another ten years. I could take that time to think over my options and in the meantime do surveillance.
What followed was a nightmare that I couldn’t have foreseen. Doctors appointments, breast exams, pelvic exams, mammograms, sonograms, ultrasounds, MRIs, and biopsies. Once one round was done, another round started. All this poking, prodding, and scanning always found something that required further investigation, usually with a needle or a scalpel. I had emergency exploratory surgery because my oncologist thought that I might have ovarian cancer. Another round of surveillance led to an agonizing uterine biopsy. Another round led to a biopsy of a breast lump. I didn’t have cancer. I do still have scars.
The surveillance wasn’t just physically invasive. Coupled with the emotional burden of my genetic risk, it interfered with my friendships and familial relationships. It interfered with my personal life. It interfered with my work. That new dream job was just one part of an all-consuming career. I was supposed to be working 50 to 60 hours a week. Writing. Traveling. Networking. Promoting my work and myself. I was supposed to be young, energetic, eager, sophisticated, hardworking, happy, and full of promise.
Instead, I started forgetting important meetings. I found myself unable to meet deadlines. I distanced myself from colleagues. I stopped socializing almost entirely. Alcohol gave me panic attacks. Parties filled me with dread. I missed work to stand in hospital basements for mammograms. I couldn’t sleep. I waited in cold rooms for a doctor to come in and stick her fingers in my vagina and ass. My tits always seemed to be out–groped, smushed, and stabbed by an endless parade of specialists. Lots of people were sympathetic. Others were flippant, dismissive, or, in a few cases, shockingly cruel. No one seemed to understand.
When I looked into the future all I saw was years and years of torturous surveillance. I decided the only escape was surgery. I spent a year planning. I weighed my options, choose what kind of reconstruction I wanted, talked to BRCA+ women online, went to a FORCE conference, and interviewed surgeons. In the end, I had a salpingectomy and a double mastectomy with DIEP FLAP reconstruction. Along with the exploratory surgery, it ended up being four surgeries in one year. I hadn’t anticipated that many procedures. There was no way to truly prepare.
It took me two years to physically recover from those surgeries. I was exhausted, fragile, weak. My mental health was terrible. My new boobs didn’t fit into my old clothes. The stress fucked up my immune system. I kept getting sick. I spent hours and hours and hours on the phone trying to make Anthem insurance pay for the preventative surgery that they had preauthorized. I cried over piles of medical bills. I cried in dressing rooms. I cried in my office at work with the door closed and the lights out, hoping no one would know I was in there, only to realize later that the walls were thin. Everyone knew. I become the subject of gossip. I blurted out details of my way struggles, looking for support, and watched people recoil at the TMI. I had a lot of therapy. I lost a lot of friends. I mourned my father–desperately, violently, desolately, furiously. I tried to go back to my regular life: that shiny bright promising life before cancer, loss, BRCA, and surgery. Under my clothes, I was a draining, bleeding, oozing mess. I was deeply depressed and quivering with anxiety. My rage was a bottomless void.
That was five years ago.
I have no regrets. I made mistakes, sure. But I did what I could. I did what was necessary. I made the right choices for my body. Despite everything, in many ways I was lucky. I found some small bit of agency in an impossible situation. I liberated myself from surveillance. I made myself a new life that includes BRCA–I had no choice!–but I no longer feel defined by it or by cancer.
BRCA changed everything. It changed me in ways I could not have predicted. My body is different–very, very much so. But so is my personality, my habits, my career, my relationships, my goals, my mindset, my politics, even my sartorial aesthetic. And I’m still tired. I am not the same person I was before those test results. It took me years to accept this, but I did.
Looking back at the last decade, I mourn the loss of my loved ones. And I mourn the loss of the person I once was.
So…fuck cancer in 2020. And always remember: