Uncertainty and Me

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Written by AFC Community | December 14, 2021

“Uncertainty and Me” was originally published in the 2021 “Community” issue of WILDFIRE Magazine.

There are few people in the world who like uncertainty, but some people can go with the flow, take things as they come. Before cancer, that was definitely not me.

I was born almost two weeks past my due date, a fetus reluctant to leave the security of the womb for the mysteries outside. This presaged a pattern in my life – I would research and plan, considering every facet and angle of a decision I could think of, before weighing all options and deciding on a course of action. This was my way of being as sure as I could about something, of having control of the situation. It didn’t leave much room for spontaneity and sometimes felt like a weight around my shoulders, but it was how I tackled the world. It was safe and responsible, which were qualities I valued, qualities that helped me be certain.

Then came the first cancer diagnosis, a week after my wedding: adrenocortical carcinoma, a one-in-a-million malignancy with few studies and treatment options. Nothing in the situation was clear, so I fell back on what I knew best – I researched, I weighed and stressed over the options for months and finally made a decision about my treatment plan. I had learned that my tumor was extremely low grade, so I declined the offer of mitotane, a drug that would have shut down my adrenal function, and just had my tumor surgically removed. Then, I returned to my life.

After a few years cancer-free, I started to relax and not worry about dying every time I had a scan. But I was still very careful, re-doubling my planning, trying to consider another variable, early morbidity or mortality, that had not been part of my equation before. While we bought a new home, I did not want to spend too much, in case I was not around to pay the mortgage in a few years. While we started a family, I insisted we wait for five years after my diagnosis, so I would feel better about my risk of recurrence. While we travelled, I only booked trips after my scans, so I would be more certain that I was healthy enough to go. While I thought about making a career change, the idea that I might become sick again while being in between benefit plans gave me serious pause. So, I lived but I continued to try to plan for every single eventuality and still strived for certainty.

Eight years after my first diagnosis, I found a lump in my right breast. A week later, my breast cancer diagnosis was confirmed, and I was again plunged into the uncertainty of serious illness. This time though, it was different in several ways. The breast tumor was triple positive, very aggressive. It would require chemotherapy, immunotherapy, and surgery, and maybe radiation. I would not be able to get away with one surgery this time, it would be a much longer haul and there would be many more side effects. I was also now mother to a toddler in the middle of a pandemic where daycares were closed and all the usual supports (EarlyON centres, Nanny Angels, etc.) were unavailable. These things felt overwhelming and sent me into a panic. I worried what would happen to my child if I was gone, whether he would remember me, and that then sent me into a depression.

Luckily for me, being diagnosed with breast cancer during a pandemic also had some perks that would soon benefit me. First, it made it easier for us to move in with my parents for childcare and emotional and physical support. My brother, who lives across the country on the West Coast, was furloughed so was able to come home and help for four months as well. Second, almost all the support services were moved online, which made it much more accessible. Whereas I could not have attended a writing seminar or a support group in person due to distance or childcare needs, now I could attend online. Early on in my breast cancer treatment and diagnosis, I learned that there were many support associations for young women with breast cancer. While I still have not met anyone else with an adrenocortical carcinoma diagnosis, there were many women with a breast cancer diagnosis that I could connect with and many resources specific to this cancer that I could access. This support gave me a sense of community when I needed it and was a bridge to more holistic programs, like the Ignite Experience Program through A Fresh Chapter, and the Mindfulness and Compassion program through the Sarana Institute. And it is through these latter programs that I have learned some truly important skills and lessons.

I have learned that uncertainty can be viewed as possibility and opportunity and does not have to be frightening. I have learned that the only certainty, aside from death, is uncertainty and thus, everything will eventually pass, even unpleasant things. I have learned how much I long for connection and that I should not be afraid to be vulnerable to achieve that. I have learned that it does not matter what kind of cancer one had or treatment one received, all our experiences are valid, all of us have experienced this terrible disruption and are now acquainted with a particular kind of fear that we must learn to dance with. I have learned to be present in the moment, not worry and plan so much for tomorrow, and just enjoy today. I am still the sum of all my experiences, and I still revert to planning and searching for certainty at least once a day. But I do strive every day to be more present and to see the possibilities rather than the obstacles. I am trying to just go with the flow.

At age 27, Lori was first diagnosed with adrenocortical carcinoma, Stage II. After facing her second cancer diagnosis as mother to a young child during the pandemic, Lori has learned to find joy in the absurd, to really value the pint of ice cream in her freezer and, of course, to always be grateful for friends, family and good health when you have it. Lori is a pharmacist and lives in Ontario, Canada, with her husband, son and corgi.
instagram.com/@hildie_the_corgi

 

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