As a woman, there are few things more impactful than learning your mom has cancer. Everything changes—even the concept of “normal” changes. There is life before cancer… and there is life after.
I found out my mom had Stage III ovarian cancer during Thanksgiving break of my freshman year of college. I wasn’t originally going home for the weekend, but decided on a whim to travel the 800 miles to see my mom. Looking back, I’m not sure what made me want to go home, but at 18 it was the longest I had been away from my parents. Even though I spoke to my mom on the phone regularly, I was ready to see her. And let’s be honest… I needed a break from the dining halls.
My dad picked me up from LaGuardia Airport and we talked as if nothing had changed in my absence over the last 2.5 months. He threw my bag into the car as he talked incessantly about my 16-year-old sister and her newest “dream school.” As we drove out of the airport, he talked about my grandparents and their garden. “You should see the carrots they had this year!” he exclaimed, but he left out anything about my mom. It wasn’t that unusual. My parents have never been sentimental and talking about one another casually has never been a common occurrence. After what seemed like hours in the car (New York City traffic, right?!) with updates about everything from my dad’s favorite TV show to my grandparents’ veggies, we finally arrived to our house in Brooklyn. I grabbed my bag, walked up to the door and was greeted by my mom who was sporting a look that can only be described as a Fiona-Apple-meets-pixie-cut. Sure, it was around the same color that I had last seen on her, but my mom’s distinct, short curls weren’t there. It was clearly a wig—no one could recreate those curls. She was never overweight, but standing in front of me, I could see her clavicle. The 40lbs she lost looked like it had melted my mom away: her wrists stood out, she had dark circles under her eyes, and she looked like she had aged at least 10 years. I hugged her gently, not wanting to break this new person in front of me, but was immediately suspicious.
Three minutes later, as she was handing me my favorite slice of NY pizza across the kitchen table, I said, “You have cancer.” She nodded.
I knew what it was without her even explaining it to me. I blamed myself for ignoring the signs (I went back through old phone calls with her—Did she sound off? Was there weariness in her voice that I didn’t notice?) and ignoring her phone calls (I was busy, I had tests and friends and a new life to adjust to…right?). No one in my family had a history of cancer, so this wasn’t even on my radar. Over the slice of pizza, now sitting untouched and cold on my plate, I found out the litany of information she had so carefully kept from me.
I learned my mom instructed my entire family to hide her secret from me. My mom knew she had cancer since July of that year.
I knew she had a surgery a month before I left for college, which I later learned was a hysterectomy. At the time, she said it was a “small precautionary surgery to biopsy her ovary” and was “negative.” I didn’t exactly believe the way she explained the science, but I also didn’t question it. At the time, I just assumed she was confused about what the doctors told her. Besides, she recovered quickly and flew out to Chicago the next month to move me into my freshman-year dorm. I never suspected anything was wrong, because why would I? My mom was a jokester, but I still trusted her with everything she seriously told me. She never smoked cigarettes, ate fairly healthy, and lived an active lifestyle.
My dad learned in August and my sister in October when my mom lost all of her hair from chemotherapy. Meanwhile, I found out on November 23rd, the day after her 61st birthday. It was all starting to make sense. My younger sister, someone who I talked to almost daily before I left for college, wouldn’t call me while I was away out of fear that she would reveal my mom’s secret. My dad, on the other hand, had a solid poker face. He gave no indication that my mother was sick.
I kept staring at the cold pizza, tears brimming. What the hell was happening? My mom, ever the practical one, explained that she had wanted me to go and start college on time. As a first generation American, higher education—especially at the University of Chicago—meant everything to my parents. Both of them received graduate level education, but not at the level of prestige that was associated with a top-10 school in the U.S. “You needed to go and live your life as if nothing was wrong,” she said. It’s a point of view I’m only now coming to understand.
As my dad drove me back to the airport Sunday morning, tears streamed down my face. They were ceaseless. I felt betrayed. I was confused. I wasn’t sad—I was broken. I felt like the two people I could rely on lied to me in the most basic sense. I didn’t want to go back to school and finish the quarter, a feeling they expected and feared.
It was the only thing my mom asked of me. “You have to go back to school. You must continue your studies. There’s nothing you can do for me but study and succeed.”
In the car I kept screaming at my dad, “How do you think I’d feel if my mom died without me even knowing she was sick? I hate you for keeping this from me as if I didn’t have the right to know!” He kept his poker face and looking straight ahead he said, “If you lose her you still have the rest of your life, but what about me? Without her I have nothing. She asked this of me and I had to comply.” It was as if the well of tears got deeper—I could not stop them. I didn’t stop crying until I landed in Chicago. I was able to keep it “together” for about five hours after landing—I think from dehydration, but after sitting with my thoughts more, I cried for the next 30. I begged my parents to let me take the rest of the quarter off. I wanted to be home. I needed to be home with my mom. I kept picturing how frail she looked the day I left her in New York, how upset I was at her for keeping this from me, and how that might be last time that I would see her.
Months later, her condition slowly improved. In April of the following year, she was declared cancer-free—a heavy term that carried with it thoughts of “What if?” and “What’s next?” I stuck to my promise. I never took time off from school, but came home over the summer for her recovery. As my mom started to heal, her concerns turned toward my sister and me—how to prevent this from happening to her daughters?
My mom was genetically tested and found out that she is BRCA1 positive. Having two daughters, her doctors quickly recommended that my sister and I get tested as well to see if we have the mutation that would give us a higher risk of developing breast and ovarian cancer. Our risk was already higher given that our mom was positive, and our mom urged us to get tested. My sister intentionally did not get tested. She felt as if knowing she had the gene would give her a “life sentence,” even though many women with the mutation never develop cancer. I, on the other hand, immediately went to my OB/GYN, gave blood, and learned that I was BRCA1 and BRCA2 negative. Although these genes are large risk factors, being free from the mutations does not mean I am any less aware of signs and symptoms of the disease. Regardless of our choice to get tested, my mother’s diagnosis meant my sister and I were acutely aware of early signs that could save us from the treatment she had to go through.
My mom didn’t just give us a great sense of humor, she gave us the gift of awareness and knowledge that will protect us in the future.
My mom’s diagnosis prepared me for the world in a way that I could not have anticipated. Sure, as a kid, she taught me not to talk to strangers, look both ways before I crossed the street, and to always wash my hair with sulfate-free shampoo—but as a young adult, her cancer made me acutely conscious of the fragility and wonder of life and the decisions that adults have to make every day regarding the people they love.
While I may not be an authority for all daughters of women who have been diagnosed with cancer, I can confidently say, there is no right way to tell your daughters. It’s not your fault and none of us blame you, Mom.
Stay tuned for another post that focuses on sexual function and the changing landscape of genetic testing!
In the meantime, Color Genomics’ BRCA Tests are $99 instead of $149 for the month of April.