It is difficult to imagine who I would be today without cancer. The carefree teenager I was when diagnosed quickly learned to navigate the waters on the edge of life and death. Everything before cancer was easy: sports were easy; studying was easy; family, friendships, and relationships were easy. Life was easy. Even taking a breath was easy and required no thought or effort. Cancer and its treatment, for me, required ease to become a conscious effort.
In 1994, the year I turned 16, radiation destroyed my Hodgkin’s Lymphoma. Now, as a 41-year-old male, I don’t have to worry about Hodgkin’s anymore. At this point, I worry about tumors and damage caused by my treatments.
While radiation destroyed my cancer, it destroyed other parts of my body as well. Some effects were immediate, while others took, and continue to take time to develop.
During treatments, I had the “common” side effects of radiation. My skin was burned in places, and the smell of dead and dying skin will never leave my memory. My mouth, esophagus, stomach, and colon all were burned, scarred, and eventually developed sores and ulcers. My lungs are scarred, my thyroid is destroyed, along with my spleen. My spinal cord accidentally received too much radiation in one part which caused me to have some short-term side effects (L’Hermitte’s sign), and longer-term ones where my nervous system just doesn’t always relay information the way it should.
Even though 25 years have passed since my treatment, the side effects are still with me. Having no thyroid requires a daily dose of medication; the lack of a functioning spleen means I catch most of what I am exposed to, especially with young kids in school: colds, the flu, stomach bugs, pneumonia, and active tuberculosis are but a few on the list of diseases I have “caught.” My heart and cardiac system are checked often to make sure my heart valves continue to work properly. There already have been some cardiac scares, and there are some electrical conductivity problems that have manifested themselves. The problem, however, is that there is no simple answer as to if and how the radiation caused this. Some doctors are convinced, others are unconvinced and many of my ailments remain unexplained.
I have to conduct self-breast exams, as well as testicular exams, and lymph node explorations. I have to examine my body for any lumps, bumps, or anything else out of the ordinary. No matter how far I have come since my last day of radiation therapy, it takes a millisecond to be thrust back in that doctor’s office where I first received my diagnosis. The fear can be suppressed, but I have still not been able to make peace with it. Nor have I been able to make peace with the fatigue that can take over my life. It comes and goes and has become my “common” side effect. The long-term effects are evident in the multiple secondary cancer scares I have had: testicular cancer, thyroid cancer, skin cancer, leukemia, lymphoma relapse, and lung cancer. All require testing, further testing, monitoring, or treatment for it being something else.
I am alive thanks to radiation and I am destined to forever worry about the consequences of my treatment. I am one of the few very lucky ones. Neither my cancer nor my treatment killed me. But there is a price to be paid. I am always reminded in subtle, and not-so-subtle ways that I survived and should, therefore, not complain. Maybe it was the time when I was treated, but having cancer was something you shouldn’t talk about, especially if you survived; I somehow became convinced that my silence equated gratitude, and my silence was the price I paid to be kept safe from the effects of my treatment.
Both cancer and my treatment continue to have lasting effects on my physical and mental wellbeing. I have had my peaks and my valleys; I have collapsed while throwing up blood from the bleeding ulcers in my stomach, and I have crossed the finish line after a marathon. I can be scared, and I can be brave. I can dread the future, and I can be hopeful for the same. There is no such thing as a carefree life, although I will continue to seek out those moments where life seems perfect and I am free, if for a second, of fear. It is in those moments where I find the courage to keep going, take the dose Synthroid, submit to another scan, have more bloodwork done, breathe and wait for the results to come.
I am a son, a brother, the husband to a beautiful wife, and the father of three beautiful children, I am a survivor who hopes that we can find better ways to treat pediatric cancers.