Every year, approximately 1500 children are diagnosed with cancer. Because of advances in treatment options, 78% of children with cancer survive more than 5 years, and 70% are considered long-term survivors (Childhood Cancer Canada, 2011).
I am a part of that long-term survivor population.
At 15 months old, my parents were told that I had Wilm’s Tumour–a tumour the size of a grapefruit—in my left kidney. I was treated with chemotherapy to shrink the tumour, and surgery to remove the tumour, which resulted in the removal of my whole kidney. Soon after, the cancer relapsed in my liver. I was radiated and received more chemotherapy. I was in remission at the age of 4 years old. After 5 years in remission, we celebrated the fact that I was considered cured.
Childhood cancers are different than adult cancers, yet treated in the same way. Treatments remove and destroy cancerous and healthy cells, causing extreme damage to the developing bodies. Childhood cancer survivors are 7 times more likely than the rest of the population to develop heart problems (St. Baldrick’s Foundation, 2015).
At 14, the year I would have celebrated 10 years in remission, I was instead diagnosed with cardiomyopathy. The chemotherapy drug that we were told could potentially cause heart problems, was doing just that.
I began taking medication daily. At one of many meetings in my cardiologist’s private hospital office, we discussed the possibility that I may require a heart transplant in the future. I was 15, and I refused to believe any of it, because I felt totally fine. I had a life to live.
And live my life I did. I went to school, I hung out with friends, wrote, and dreamt about my future. I was living a normal life. But then, at 16 and out of nowhere, I felt my hand go cold, white and numb. Eventually this subsided into a crushing pain. I had a blood clot in my arm, and so I had to begin injecting myself with blood thinners. Three months later, I stopped taking the blood thinners because the cause of the clot could not be determined. I remained on my heart medication though, and with my doctors’ approval I embarked on a 6-week-long trip with my best friends before my final year of high school.
It was an amazing trip, and I was so grateful for the experience. A week after returning from the trip, however, I woke up with a headache. I was exhausted, and I felt a wave of nausea, so I walked as quickly as I could to the washroom. I tried to open the door with my left hand, but all I managed to do was pat it, and I walked into the door. Hearing the bang, my mother came to see what happened, and when she saw the left side of my face drooping, she told me she thought I was having a stroke. She told me to sit down. I did. I was so tired.
That day is a blur to me. I remember waking up at the children’s hospital, finding out that I indeed had a stroke. With the support of my family and friends, I managed to make a full recovery. I returned home with minor deficits in my smile which quickly subsided, and soon after I began my final year of high school.
My time in school was filled with good memories and fun times with my friends. But at the same time, walking had become harder, everything slowed down for me and I gained 30 lbs of fluid weight. Without a diagnosis, however, I assumed normalcy and was desperate to move away for university.
I began my first year away at Western University. While my mind, like my peers, was filled with excitement about the future, I was also preoccupied by the fact that things like walking to class had become extremely difficult. My lips were constantly purple, and the sodium content in the cafeteria food was making me sicker. Towards the end of my first semester, I was diagnosed with mono. Although I recovered quickly, the strain that the mono had put on my body made my heart beat at rapid, abnormal rhythms. At that point, I made the decision not to return to school.
Shocking my heart back to a normal rhythm was expected to make me feel better, help me walk more quickly and breathe more easily. It didn’t.
I was 18 and my heart was failing. I was missing out on all the fun and life that an 18 year old should be having. I was 18 and I was stuck in an 80 year old’s body.
I was admitted to the hospital. I withdrew from everyone. Every inch of my body was checked for any dysfunction that would make me ineligible for a heart transplant. The thought of a new heart meant hope. In discovering that the rest of my body was healthy enough, I also found out that my heart function was increasing, so I was not listed for a heart transplant. Instead, a pacemaker-defibrillator was implanted. Excitedly, I returned to school closer to home.
A month later, while walking along, I suddenly felt like I had crashed into a brick wall. My pacemaker-defibrillator had delivered its first shock. A few months later, I was sitting down, and it felt like a baseball bat had been swung at the back of my head. No one was behind me. Soon after that, while rushing to a baseball game, I tripped but it felt like someone had shoved me. As the shocks occurred more often throughout the year, I was diagnosed with chronic atrial fibrillation.
My doctors attempted a procedure to correct the fibrillation, but it sent me into cardiac arrest. A second attempt at the procedure was deemed too dangerous, and I was removed from the operating room. I felt hopeless.
The doctors presented me with a final option: a different pacemaker that would help blood pump more efficiently to the rest of my body. I had hope, and underwent surgery. I recovered, was released from the hospital in time for my 21st birthday. The following summer was the best one I’d had in awhile.
That fall, my energy slowly decreased. I packed bags before attending a regular appointment, suspecting that I wasn’t going to be leaving the hospital afterwards. I was admitted to the hospital, and every part of my body was poked and prodded to make sure I was eligible for a heart transplant. I was put on the transplant list, and I was hopeful at the prospect of a renewed chance of life.
I spent 10 days at home, with every phone call increasing my heart rate and making my stomach spin. At 1:30AM on the 10th day, as I was just getting ready to sleep, the phone call came. I went into surgery at 6:30AM.
I woke up with tubes everywhere and my body being maneuvered by ICU nurses. I cried for water that they couldn’t give me. They demanded I sit up in a chair and that I start walking before I felt ready. I demanded more morphine. Recovery was painful, physically and emotionally. I would feel better, then be surprised with extreme rejection. With the support of family and friends, recovery became easier. In time, recovery turned into living, albeit with extreme ups and downs—immunosuppression continues to put me at high risk for infection and illness.
I have had a beautiful life. I am surrounded by incredible people and lots of love. But childhood cancer has challenged me to learn to navigate a world in which I cannot function as a ‘normal’ person. It has meant a different course for young adulthood. I have to learn to take breaks. I have to learn to navigate relationships differently.
On the other hand, survival has meant that I can develop new relationships. I have so much gratitude for the opportunity I’ve been given to live a new life. I am able to live, explore the world, follow my dreams, and create new ones. I am a lucky one.
By 45, more than 95% of childhood cancer survivors have chronic health problems, and 80% have severe or life-threatening conditions (St. Baldricks Foundation, 2015). These conditions include cardiopulmonary, endocrine, renal, hepatic, reproductive, neurocognitive, psychosocial and learning problems, and second cancers (Public Health Agency of Canada, 2012).
I hope for a future where survival can be celebrated by a higher percentage of children, young adults, and adults. A future where people like me won’t have to hold their breath, waiting for the next bump in the road of chemotherapy’s and radiation’s long-term-effects; and a future where survivorship can be relied on to be the only, permanent, long-term effect.
“Cancer in Children in Canada (0-14).” Public Health Agency of Canada, 07 Sept. 2012. 14 Nov. 2015. <http://www.phac-aspc.gc.ca/cd-mc/cancer/fs-fi/cancer-child-enfant/index-eng.php#lat>.
“Facts and Figures.” Childhood Cancer Canada. 2011. 14 Nov. 2015. <http://childhoodcancer.ca/education/facts_figures>.
“How Big Is the Problem.” About Childhood Cancer. St. Baldrick’s Foundation. 14 Nov. 2015. <http://www.stbaldricks.org/about-childhood-cancer/>.
Maya Stern is a 26 year old long-term cancer survivor. She graduated with a Masters of Public Health, and a Bachelors of Environmental Studies. She practices yoga, and enjoys reading and writing. She is in the process of writing a book detailing her experiences with chronic illness. Maya is pursuing a career where she can empower others to take control of their own health.