Cancer is a scary word. Everyone knows of someone who has died of cancer. Cancer conjures up terrifying images of bald heads, scarred chests, IV drips and hospital beds. If you have cancer, your friends and family look at you with total helplessness. If you are a child of someone who has died of cancer, they look at you with pity. That’s what I hated the most.
My mother had her first mastectomy before my second birthday. After that, she was in remission for about seven years. I mainly remember the wigs, the prosthetic breast, the oxygen machine (I can still remember the ominous sound it made day and night) and, of course, the same question over and over: “How’s your mom feeling?”
“I’m keeping her in my prayers,” people would whisper, patting me on the back with that look of pity in their eyes.
I hated going to “How to Cope for Kids,” a support group run through the hospital because it was just another reminder that our family was not normal. My mom was a child psychiatrist; she believed very strongly in educating children about sex, mental illness, smoking and other sensitive topics. She was frank about her health as well, but only with my older siblings. As the youngest, I was kept mostly in the dark.
Several years after she died, we found a letter in her journal explaining why she had kept me at arm’s length during those difficult years: she wanted to make it easier on me when she died. And, while she meant well, that decision left CANCER etched in my memory as scary, painful mystery. My 11-year-old self, remembers only pain, loss and confusion.
The discovery that a mutation in the BRCA gene was linked to breast and ovarian cancer occurred only a few years before my mother died. She was not tested for it, but my grandmother and both of my aunts later tested negative. I tried not to think about cancer, but it haunted me throughout my adolescence and early adulthood; even my horoscope is Cancer. Hearing the word would trigger an emotional wall I had built to avoid reliving those early years.
My senior year of college, a group from NYU came to Yeshiva University to provide free open genetic testing for common mutations amongst Ashkenazi Jews. This open genetic testing service was designed specifically as a counterpoint to Dor Yeshorim, a genetic testing service that only tells you and your potential marriage partner that you are — or are not — genetically compatible with a prospective partner. The results of the tests, however, are not given to those tested. In addition, Dor Yesharim only tests for the top 10 most fatal or debilitating conditions, whereas NYU tests for mutations that, if not fatal, could require lifelong medical attention.
The opportunity to unlock information about my genetic makeup opened my eyes to the idea that knowledge about your health is power, especially if it applies to future decision making. Genetic testing results would not give me a medical diagnosis that affected me today, tomorrow, or even next year — but the would give me a chance to make a choice when the time came for me to have children.
In 2013 — after I had been married almost a year and 13 years after I lost my mother — I finally decided it was time to get tested for BRCA. I called NYU Langone Health and made an appointment with a genetic counselor. The appointment was supposed to be fairly routine; they would ask me my full family history, draw my blood and call with the results. I sat down across the desk from the genetic counselor, ready with my papers in hand.
I was startled when the first thing she said to me was, “I understand you lost your mother from breast cancer at a young age. How was that for you?” I stared at her incredulously for a second before bursting into tears. How was it? Is there any other answer to that question than “horrible?” Through my runny nose and bleary eyes, I looked at her, still shocked at the way she had worded her question. Once I finally calmed down, she said, “It seems like you are taking the death of your mother very hard, even after all these years. I recommend you see a therapist.” Waves of anger began to crash. How dare this woman presume to understand anything about my emotional and mental health after talking to me for five minutes? I had lost my mother, but I had wonderfully supportive family and friends and a loving husband. I did not need her pity and I did not want her questions.
When I think back to that day, I wonder if she was right. Maybe there was some part of me that had never truly faced the reality of cancer until I was sitting in that office, waiting to be tested to see whether I was at risk; whether my genes carried the threat of cancer. Between my mother’s efforts to shelter me from her illness and my own attempts to avoid confronting what had happened, I managed to dodge the idea that cancer could happen to me, too.
I remember exactly where I was when I got the phone call. It’s one of those flashbulb memories, like where I was on 9/11, or where I was when my mother died. When I got that call, I was in an empty classroom in the charter school where I was working. Thankfully, it was not the genetic counselor but rather a sweet office assistant, calling to give me the good news.
I had tested negative for BRCA. They had tested for BRCA 1 and BRCA 2 and ran a full screen to ensure they hadn’t missed anything. I was relieved, to say the least. But once I accepted the relief of the good news, I felt grateful. Finally, I had faced the big scary idea of cancer. I had overcome my fears with facts. I had looking the unknown in the eye and made this challenge my own.
After losing a parent, happy moments are sometimes overshadowed by the painful realization that your loved one is not there to share that moment with you — graduation, marriage, the birth of your first child.
I used to hate when people would say, “Your mother would have been so proud of you.” It made me sad when what I wanted most was to enjoy those few, precious great life moments, just like everyone else.
Still, choosing knowledge over the unknown is not a mistake. Choosing courage over fear, and honesty over denial allows me to face those moments, with joy and with strength. Reckoning with my fears would have made my mother proud.