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I’m a cancer patient and I am the mother of two young girls who have no memory of a cancer-free mom. If you saw me, you would never know about the cancer sleeping in my cells, the crushing fatigue or the myriad appointments.
Eleven years ago, at the age of 29, I was diagnosed with thyroid cancer. I’ll admit – it rattled me. I was forced to slow down and catch my breath, but I got better: I was still in the game and the finish line was nowhere in sight. The arrogance of my good health was eviscerated when, at the age of 36, I was diagnosed with metastatic breast cancer. The terminal kind.
My biggest challenge has been to continue living a life that feels worthwhile. I mean, for my spirit to really feel joy. Early on, I spent a lot of time grappling with the dying part, but then... I didn’t die. Advances in cancer treatment mean that people like me are living longer with incurable disease. The living years for those of us with treatable, but incurable, cancer lies somewhere between having months to live and managing a truly chronic disease, such as diabetes. Eventually we will only have months to live, well before what should be the natural end of our lives.
Every day, my body and mind struggle against the gravitational pull of my mortality, and in the midst of it all, I feel myself straining to infuse each moment with meaning. I want to be a patient mom and a loving wife, but I often feel like my failures are burning an impression in the memories of those I love.
Even in a sea of coping and overcoming, I find myself splashing about, gulping for air. As a parent, I often feel exhausted and unwell when I’m trying to make the most of the time that I have with my young kids. I strain the bounds of my philosophical resources to balance the desire to feel every emotion and settle into the weeds of life; with the impulse to rely on medication to soften the edges. Sometimes I just want life to be a little easier.
Two years after starting breast cancer treatment, I was diagnosed with a third primary cancer. It was an early-stage lung cancer, picked up by routine scans. I was thoroughly embarrassed and imagined the trailer for a B-movie about my body called Cells Behaving Badly. It was a ridiculous amount of cancer to have by the age of 38, but it wasn’t surprising.
As it turned out, I have a rare genetic cancer predisposition syndrome called Li-Fraumeni syndrome (LFS). Having LFS means that I have a hereditary mutation in my P53 gene: a gene that has been coined the “guardian of the genome.” When P53 is mutated, it doesn’t repair DNA properly, so cancer is free to grow unsuppressed. A parent with LFS has a 50 per cent chance of passing the genetic mutation on to each of their children.
One of my two daughters also has LFS. So, here’s what I now know about her future. She has a 40 per cent chance of developing a childhood cancer and almost a 100 per cent risk of developing cancer at some point in her life. It also wouldn’t be surprising if she were to have multiple cancers. The best strategy we have to cope with this information and turn the knowledge into power (otherwise, what’s the point of knowing?) is to keep an eye on things. So, we take her to the hospital for surveillance that includes blood work and ultrasounds every three months, and MRI scans every six months.
It’s an understatement to say that I have a tough time reconciling this dark uncertainty about my daughter’s future with my own precarious hold on life. Not only will I miss all those times that she needs her mom to just listen quietly and look into her eyes, but I may not be there to hold her hand if, and often it feels like when, she has to deal with cancer. It feels cruel that I will have to leave behind my husband behind to deal with it all.
I don’t want to wait around to die, but living a full life can feel like climbing a mountain, knowing a tragic fall awaits me at the summit. My instincts often tell me to stay close to the ground, so I can just lie down and curl up when the time comes. But there’s no joy to be found at the base of the mountain, no view in which to delight.
To gather the resolve to climb higher, I’ve adopted strategies that feed my spirit. I write. I meditate and read books about Buddhist philosophy, because it speaks the language of my soul. It’s taught me to practice living in the moment, to recognize and settle into joy when it’s there, and to be gentle with myself.
I also seek solace in great fiction writers who have the ability to fine-tune the perspectives of their readers. They reveal the mysticism that saturates all of our storylines. Maybe it’s all about perspective. When I’m tuned in to the right perspective, I’m able to catch glimpses of the timeless and mystical qualities of my own story. I remember that it’s a story worth living. If one were to lose their storyline, I’m sure hope would soon follow.
Once cancer treatments begin to fail, my fall from the mountain will come quickly. Too quickly. But, my story will continue until that day, and I hope the view from the summit is breathtaking.
Amy Peasgood lives in Toronto.