05 Dec Mom Genes
As a grade 7 high school student, I was asked to write an English essay about my “hopes, dreams, and aspirations for the future”. Most teens in my class described ambitious academic and career goals and philanthropic intentions. I chose to write about my hopes and dreams being side-railed by a future cancer diagnosis. In my essay, my thirteen- year-old self went on to explain that my mother had passed away from cancer the year before, and that I would most likely “inherit” it too. It was unfiltered, dramatic, morbid, and a true adolescent expression of grief. Needless to say, my teacher read my essay, and swiftly referred me to the school guidance counsellor (thank you Mrs. H!) and weekly counselling followed. While the support at the time was helpful, it was a Band-Aid on a much deeper wound. A wound that has only deepened through the years as I have mastered the art of emotional avoidance. How does one deal with the anxiety that comes from a core belief that you will be diagnosed with cancer at a young age because of your genes? Deflect. Distract. Ignore. Escape. Repeat.
My mother was diagnosed with the big C in her late thirties, while I was in elementary school. At the time, my young age and naiveté thankfully served as a shield that protected me. All I saw was the perfect soccer mom, who babysat the kids on Simard Street, always said yes to hosting, and made everything look chic and effortless. Even beating breast cancer. A few years later, cancer reared its ugly head again shortly after I started grade 6. This time, I was older, wiser, and was able to connect (some) of the dots to be able to tell that something just wasn’t right.
Then, the day came when she was supposed to pick me up for a mother-daughter lunch date at school, and she didn’t show. She also didn’t answer the home phone when the school secretary called.
The concerned looks from the lunch monitors made me feel uneasy. When I came home from school that day and found her unconscious, my world fell apart. That super mom image quickly faded away from seeing her so vulnerable, and a harsh reality set in. She passed away exactly one week later as the cancer had entered her brain. From that point on, the fragility of life, and the unforgiving nature of cancer stayed with me and changed the way that I viewed the world, and myself.
Through adolescence, I felt that I had a deep dark secret. My genes were damaged in some way, and the truth would come out soon enough.
As I developed into an adolescent, and moved through young adulthood, people would often comment on how much I looked like my mom. “Identical” I would often hear. When I heard these comparisons, I often wondered about how identical we were on the inside.
In my late twenties, a friend casually asked me about genetic testing for the “cancer” gene. At the time, I didn’t even realize it was a viable option for someone my age. An option that I could choose, and one that I “should” choose. A quick Google revealed more details. A simple blood test, the BRCA gene test analyzed DNA to identify mutations in the BRCA 1 and 2 genes. Individuals who have mutations in these genes are at increased risk for both breast cancer and ovarian cancer. Woah. Wait. My question about “inheriting it” could be answered by a simple blood test? At that moment I wasn’t ready to walk down that path. I had every excuse in the book. My dissertation had to be finished. My career was taking off. I was traveling that summer. If I was honest with myself, the space of not knowing, while uncomfortable, was familiar. While the possibility of a risk was distressing, the certainty of a risk was overpowering.
I am now in my early thirties. Newly married, with thoughts of soon starting a family. Many of my girlfriends are chatting about finalizing their wedding plans, parenting, pregnancy, or how their biological clock is ticking. I often find my mind wandering during those conversations and wondering if my life clock is ticking. Irrational fear? Could be. However when I ask myself the age-old cognitive-behavioural question of “What evidence do you have to support this thought“, there are quite a few points that support the fear that I just can’t ignore.
In May of 2018, my father gently asked me if I had given any more thought to genetic testing. Now, a few years older, wiser, with a different perspective on things, coupled with coming from him, the question struck a different nerve. I could hear the fear in his voice when he said “I just can’t bear the idea of losing you too“. Those words hung in the air, and something shifted inside me.
This wasn’t only about me. The knowledge that could come along with testing could help me make a life saving decision and one with big implications for my loved ones. A decision that my mother, Joanne, the love of his life, was not fortunate enough to be able to make.
But I was.
So, I have started walking down the path of pursuing BRCA genetic testing. I have had to dig deep emotionally, which has opened up some serious wounds. Trying to track down my mother’s medical records and pathology report. Sitting down with my dad after a Sunday dinner to complete a lengthy letter and application that required remembering painful dates, details, and timelines. Memories that we would both prefer to keep in the past. This time, I spent hours of researching the process online. I came away with more questions than answers, and feeling overwhelmed. Judgements (“People actually do this?”), fears (“I for sure have the gene mutation”), anger and self-pity (“Why is this happening to me”) have ensued. There have been many sleepless nights fuelled by anxiety. I thought that speaking to someone who went through the process herself would alleviate some of the feelings. I wasn’t entirely right on that one. As she graciously told her story and then answered my questions, tears streamed down my face. The process was lengthy and intimidating. I broke out into a cold sweat, and my heart beat really fast. I felt unsure and confused about my decision. But most of all, really fucking scared.
That was a few months ago. The months since have been filled with many deep conversations with extremely patient loved ones, tears, countless hours in the yoga studio, therapy sessions, and just about every coping strategy one can think of. I now know those feelings are ok, and understand they are part of the process. I have continued my research to make sure that I am armed with an understanding of what is to come, and what all of my options are, should I carry the gene mutation. I am basically trying to make the fear of the unknown, known. When I met with a genetics counsellor last week, I asked informed questions (while my voice wavered and I gripped my husband’s hand under the table) about the benefits, risks, and possible outcomes. I was proud of myself for getting my concerns and questions out in the open. After the consult and the blood test, I started to cry and had to sit down before getting on the hospital elevator. A wave of emotions hit me. It was over. Confusion followed, because even though it was done, it had really just begun. Let the waiting game begin.
This whole process, and the knowledge that will come along with the results in a few months time, while scary, has been empowering.
I am slowly becoming more grateful that I am in a position to be able to make such an important decision with serious implications for myself, my family, and hopefully my future family. I have slowly started to change my perspective on genetic testing from “I have to” to “I get to”. A mantra that incorporates gratitude, and one that I am also trying to carry into other areas of my life. Looking back, I would have cherished the opportunity to speak to my adolescent self, who wrote that brutally honest essay. I would let her know that one day, she will get to take her health into her own hands, and make an informed decision. I would tell her that she could have the power to change what has yet to come. I would also let her know that she will be in the fortunate position to be able to share her journey. Through telling her story, she just might be able to dim the worries and fears of another young woman in a similar position- and that’s aspiration enough.