Everybody has a story, just be the best character you can be- Emily Lane
“Well, if I’m dying I wouldn’t want to know” -Those exact words have come out of my mouth more than once, but a visit to the London Regional Cancer Clinic changed that ignorant perspective. I was determined to know what was wrong with me.
Many of the people in my immediate life remember the months before this “cancer-free” period, months filled with my complaints of pain. Some of them drove the 45 minutes west down the highway to my family doctor’s office with me, and some provided a tired ear to my unremitting worries. I had exhausted the subject.
The cancerous mass was found in my shoulder after multiple visits to my doctor. By the time of my diagnosis, the tumour had evolved. It pushed passed the boundaries of my bones and hugged my muscles and nerves. Prior to this diagnosis, I had always described to my doctor that the pain I felt was an ache in my bone. Throughout the near-year of complaining, the pain progressed to affect my nerves and hindered my strength and mobility. My doctor sent me to an ultrasound, then to an EMG test, and concluded that I belonged in the hands of a physiotherapist. After a year of trying to find a source for this relentless pain, I ended up in the emergency room whining that my arm felt like it was hanging on by a thin thread.
“Minimum 4-hour wait” read the sign that greeted my husband and I at the emergency room. Before I had finished reading it, I wanted to leave but there was a little seed in my stomach growing into a weight that planted my feet. I knew something was wrong and my body was basically screaming it at me. We waited 2 ½ hours before we we’re brought beyond the barrier of the waiting room. I was volatile at this point and demanded that I needed an MRI. I raised my voice at any person who decided to place themselves on the list of people who wouldn’t listen to me. Unfortunately, I did not get the MRI that I demanded, but I did get the apology that I needed. After four hours, the supervising doctor came to my curtained booth and apologized to me, saying that he was truly sorry that I had to wait so long for help. I will never forget that moment. It was then that my fears were validated and I knew something really was wrong.
Within a week of that visit, I was sent to the Hand and Upper Limb Clinic at St. Joseph’s Hospital in London Ontario, and two days after that, I was driving to the Regional Cancer Clinic to see my new oncologist; a profession I assumed was titled “Cancer Doctor” before hearing the correct term.
In March of 2014 I was diagnosed with a rare form of sarcoma: Ewing Sarcoma. This form of sarcoma arises in less than 3 of 1 million people, and typically occurs in individuals less than 20 years of age. The particular tumour I had usually develops in males during puberty and being a 21-year-old female, I was a special case.
The information hits you like a rogue soccer ball plummeting into your stomach and taking your breath away. I cried, then made a joke about smoking some weed, then cried more tears. I was terrified to lose my hair, I didn’t want to know what chemo was, and I didn’t want to spend weeks at a time in a hospital bed. In that doctor’s office, I seriously wished for the option to quit, to back out now before my reality became choosing a wig colour, planning for chemo days, and avoiding the common cold.
I fell into stigma’s trap and believed that I should be embarrassed that I had the “c” word. I didn’t want to tell anyone. I didn’t even want to tell my sisters. My mother and my husband absorbed the news with me in that stale room where the words “you have cancer” may have been spoken more than once a day. My mother became my voice for me in those first few weeks and before I had time to realize how silly I was being for wanting to hide my illness, all four of my sisters were driving into town to stay the weekend and I was receiving calls from my family members. I wasn’t dying, but the news made me feel like my world was. The future I wanted wilted while my certainty floated away like ashes being scattered.
I tried to quit again when my mother called me to regurgitate the results of my biopsy and we had the official diagnosis. I was on the way back from the Toronto Aquarium, and the call served as a knell, echoing my impending treatments. Five days over night in hospital, then three weeks later I’d back in for a 3-hour treatment. That combination would quantify one full chemo cycle and I had four to complete. Halfway through my treatment, I was to have a surgery to remove the tumour, and at that point would need to stop treatment for a month. I wouldn’t even let my mother finish relaying the schedule before I tried telling her through a shaking voice, “I can not do that”.
I’m not going to sprinkle sugar on any part of this story I will just condense it. Chemo was awful. For five days I was constantly hooked up to an IV pole pumping poison into my veins. You don’t drop weight from projectile vomiting; instead your body seems to expand from all the fluid like a puffer fish. Most of the nurses were nice, but some laid their personal annoyances on me in words smothered in attitude. I’m not exaggerating. I was struggling enough and did not need my nurses making me feel like I was a burden on them, rather than cancer being a burden upon me (food for thought grumpy nurses!).
The first round was the hardest to endure. I was terrified and blind. I was unsure what a week of in-patient chemo meant, or how I would cope. During that first round, I had shared a room with an older woman who moaned in her sleep and my stomach tightened every time that she came back from her radiation treatments as she wailed over her burns. I didn’t begin puking until the third day. I began to have relentless migraines from dehydration, so the latter half of my first treatment was more difficult. I handled the rest of my rounds fairly well because I would smoke weed to ease my nausea and it certainly induced my appetite. My husband would take soup orders for all my visitors, and mine was always a spicy mulligatawny soup. Not once did I puke that soup back up. But chemo is chemo. It makes you sick, it changes your appetite, and it hindered my eye-sight and made my skin ridiculously sensitive to soaps and moisturizers.
Although I have now been declared cancer free, I am not quite free from cancer. I’m wondering if anyone can tell me if I ever will be. I am four years past my routine chemo days and spikes of hair pushing through the pores on my scalp. I rarely see myself as the hero of this story because I know I rode on the backs of my dog, and family members who carried me through this story. But when I rang that bell signifying the end of my chemo, I found that it did not signify the end.
My life now largely involves coping with a disability as a secondary result of my cancer. The surgery to remove my tumour left me with significantly less muscles in my right arm, a titanium pole instead of a humerus, and a concrete prosthesis. My wonky arm. I was told five minutes before surgery that I will be disabled for the rest of my life and it was certainly the hardest pill to swallow of all the ones I had been given in the hospital.
Every day is different. There are times where I get frustrated and discouraged, or days where I am proud of how I’ve adapted, but sometimes I just need to be reminded that I am doing okay.
That is my long story short folks. Remember to always be a character xx