Originally posted October 2014
I’ve always considered myself pretty lucky, seemingly unscathed by the drama that unfolds during teenage years and the struggles that often ensue during young adulthood. Personally untouched by tragedy and disease that were and are both still constantly just out of reach. So much so that two out of four roommates in college had seen one of their parents pass. One of them, sat attentively a few seats away from me, taking notes, occasionally laughing in unison with the rest of our Sociology class at something the professor said, when she was interrupted by a counselor who came into the room to break her of the rhythm of her ordinary Thursday. The University staff member took her into the hallway to tell her that there had been a student running rampant, opening fire on Red Lion Junior High in Pennsylvania where her father worked as the Principal, and that her dad had been shot and killed in the fourteen-year-old gunman’s path. The other hadn’t even outgrown her toddler years, when her mother succumbed to cancer. Stripping her of the person that would teach her all of the things she would want to learn about becoming a woman, a mother. Having only foggy images, a cocktail of old photos and stories mixed together, to rely on.
And in my own family, I had witnessed so many women get sick. Some of them taken far too young, others held on, but never fully recovered. Breast cancer was to blame in each and every instance; a sort of plague that swept through our genealogical tree, scarring its victims physically and emotionally in its wake. But the reach was so much greater than I could have imagined at that time. It began before I was even born, before my great-grandmother perished at the hands of this illness, and when I started to have somewhat of an understanding, I was only a grade-school kid, watching Ben Affleck make his screen debut in Voyage of the Mimi, then learning to dissect a pig, and going to dances where the girls stood clear across the other side of the gym as the boys. In between all of the mundane, I would visit my grandmother in the hospital or sit with her on the edge of her bed as we watched Wheel of Fortune. I would ask my dad how my aunt was holding up, knowing nothing of the tests she endured, the procedures she underwent. And then, more school dances, and eventually proms. I would attend a heart-wrenching funeral for the woman who made the best Italian knot cookies and pasta e fagioli soup, who was every ounce maternal, who watched my brother and sister and I so many sick days and Friday nights; the glue that held together our family traditions. I would attend annual masses in memory of another aunt who had sadly passed, too, back when we were little. And then more track practices and swim meets and dreaded math equations for homework. Cancer had simply become a very normal backdrop of everyday life. I hadn’t even considered that other families might not be experiencing the same. That some kids had still never met someone with cancer. And at the same time, I was blindly unaware that some families also knew the sickness well, that some families had it far, far worse.
My grandmother’s sister had also fallen to breast cancer along the way and then came the diagnosis in not one, but both of her daughters. It was touching virtually all of the females in our family. It was spotted much younger and in rapid succession. It was showing no sign of slowing down. We were soon urged that all members, of both sexes, find out whether or not we contained a gene that held the propensity for cancer in the first place. And in instances like that, it is a flip of a coin, a 50/50 chance for each of us that the result would be positive. But one by one, every man and every woman turned up a carrier, having inherited this mutation, defying those very odds. The men, though, thankfully only remained carriers and never seemed to develop the disease. The women, all of them, got breast cancer, some shortly after having tested positive for the gene. Including my cousin, who was not yet thirty years old.
Fast-forward a short time later, to my mid-twenties when I was newly married and sitting in the cramped office of a genetic counselor. My husband, sister and her boyfriend (my now-brother-in-law) also sat close enough to touch knees in the other upholstered, blue-speckled chairs. After having swished a small cup full of mouthwash around my gums and taken a cotton swab to the inside of my cheek, we tucked the Q-tip into a sealed, Ziploc bag that would be sent to a lab somewhere out in Idaho. A month later that same lab would mail over an official, typed letter revealing that I did, in fact, carry, along with my sister whose test heeded the same outcome, the BRCA1 gene: a mutation somewhere in a long strand of our DNA that determines a predisposition for cancer, an increased chance of developing breast cancer, specifically, by around 90% and an increased chance of developing ovarian cancer by up to 60%. A ticking time-bomb, if you will. An indication that cancer is likely in the future, though not entirely definite. A reminder that there is no reversal of the susceptibility to the disease, no way of knowing when it may rear it’s ugly head.
But it also meant that I had the chance to try and get ahead of cancer, to be ridiculously aware of my body in the shower, to be diligent about early and frequent tests, to schedule the same rotation of ultrasound, then MRI, then mammogram every six months. It meant that I had the luxury of discussing a course of action with my husband over a glass of wine, that we would go on to have countless other conversations about preventative measures over dinners and in between commercials and at night before we went to bed. That we would lay out a very succinct timeline that would start with a double mastectomy and then the removal of my ovaries following that. These luxuries that the women in my family, and so many other women, didn’t have when they were forced into surgery or chemotherapy hurriedly because there was simply no other option.
I couldn’t help but feel a pang of guilt every time my cousin was stuck in a hospital bed or recovering from surgery. Or when she lost her hair. I couldn’t help but think about how it very easily could have been me instead of her. That our chances were just as great, our risk just as high. But she has shown incredible strength and resilience and has not stopped smiling through her whole endeavor though there have been plenty of bad days, so many challenging times. She still carves out time for her family, nights out with her friends, goes to bars and baseball games and concerts. She takes trips and makes memories. She is moving on. I don’t know if I could say I would have been able to handle it the same had that been me who was diagnosed, but if I am ever in her shoes, I will have had the greatest example of courage that I could ever ask for. She will undoubtedly be the kind of survivor I try to emulate.
I think of my cousin and the women in my family often, but never so much as in the month of October when awareness for this epidemic floods our social media news feeds, when football jerseys are adorned with pink patches and the athletes wear pink gloves, cupcake stores frost their baked goods with pink icing, and neighborhood trees are tied with pink ribbon.
If carrying this gene has taught me anything, it is that we can’t always control every outcome. We can’t decide how much or how little we will hurt or be scared or endure. How hard we may have to fight. It has taught me that I am lucky, extremely lucky to have been given this huge warning and not more devastating news. It has taught me that we must take an active role in our health; that we must educate ourselves about cancer, and that an increased understanding of the disease can be lifesaving. It has driven me to take even better care of myself, so that I can be here for my children, my family, so that I can see my husband walk our daughter down the aisle. Cancer undoubtedly tears persons, and all who care for them apart, but I have also seen how it can strengthen a group of people. Let’s make sure that in every month, not only in October, we take the time to be proactive about screenings, speak up if something seems amiss, and ask countless and thorough questions of our doctors. If cancer is in the future, let’s catch it early enough so that it remains just a small part of our future, and not let it be something that defines us, but something that we are better equipped to tackle and ultimately conquer.