In 1994, I was a normal, active 15-year-old, who loved cars, sports, and rock music, especially songs from my favorite group, The Clash. In fact, it was while jubilantly dancing alone in my room to one of their tunes that I vomited into my hands, an early symptom of acute myeloid leukemia (AML). I had noticed bruising all over my body, but that was easily explained by my tryouts for the football team. Ultimately, it was fatigue, so debilitating I couldn’t make it from one class to another without falling asleep, that led to my diagnosis and a life forever altered by cancer.
During a lumbar puncture to look for cancer cells in the fluid that surrounds the brain and spinal cord, I had central nervous system bleeding, which caused a brain infection that left me delirious for a month, and a hematoma in the center of my spinal cord, which eventually led to paralysis in my late 20s. I never cried after my diagnosis, not even while undergoing an agonizing allogeneic stem cell transplant and years-long recovery, but I cried when I knew I would never walk again. I now find strength in being in a wheelchair, but it took years to gain this perspective.
Finding a New Identity After Cancer
Soon after my cancer diagnosis, I learned the shocking truth about cancer and how it robs you of your identity, at least it did to me, just at the time when I was learning who I was as a person and becoming independent from my parents. After cancer, I was no longer the same person to my family and friends, or even to myself. Now, I was fragile, broken, and someone who needed to be taken care of. I thought I was a burden on my family and felt guilty that my illness caused them so much sadness. By the time I was well enough to start college, I had emerged as a new person. Once introverted and shy, I was now wild and impetuous, and both more vulnerable and emboldened.
I was so afraid of a relapse, I avoided going to my oncologist for checkups. I wanted to run away from cancer and all that fear and pain. But at the same time, I felt fearless. I had just beaten cancer. I was king of the world and filled with youthful arrogance.
Combining Life and Career
About the only activity I was able to do during my convalescence was watch old movies, and I fell in love with the history of cinema and film making. I studied film making in college and after graduation, I concentrated on making commercials and music videos, anything to get away from the reality of cancer. Then, about 10 years ago, I knew I could no longer hide from cancer; I had to face the demon head on. That realization has changed my life.
My friend’s brother had been diagnosed with AML at age 22, and I began to wonder why adolescents and young adults were being diagnosed with cancer, a disease I associated with older people. The young man’s death a year later brought my fear of cancer front and center, and I knew I needed help. I visited a cancer survivorship clinic near my home in Los Angeles and met with a wonderful staff of clinicians who helped me work through my anxiety. I was given a binder of information that included all the treatments I had received, as well as their potential long-term side effects, and how I should be monitored for a recurrence. The information, which would have sent me reeling when I was younger, was now comforting and gave me a sense of control. I was so grateful for the excellent care I received both during my cancer treatment and now in survivorship, I decided I needed to give back to the cancer community, especially to those adolescents and young adults with cancer. So, I have dedicated my career in film making to telling the stories of young cancer survivors.
Perspectives on Cancer
“Over the past decade, I have had on-camera interviews with hundreds of young cancer survivors, and the experience has changed my life—and I hope theirs.”
Over the past decade, I have had on-camera interviews with hundreds of young cancer survivors, and the experience has changed my life—and I hope theirs. Listening to their stories helped me work through my own trauma. More important, it helped me see that these young people were isolating themselves from life, just like I had, and I wanted to show them through these films that they aren’t alone.
It was shocking to learn that each year, nearly 90,000 adolescents and young adults are diagnosed with cancer. Earlier this year, I produced a documentary film, Cancer Rebellion (www.cancerrebellion.com), which chronicles the lives of more than 90 young cancer survivors nationwide and their perspectives about cancer and how the disease differs in a younger person compared with an older person. I’m not saying that getting a cancer diagnosis at any age isn’t frightening and potentially life-changing; it is. It is just experienced differently in younger people.
To read more and watch videos about Hernan’s documentary, Cancer Rebellion. click here.
Original article featured in ASCO Post by Hernan Barangan/Told by Jo Cavallo: https://www.ascopost.com/issues/september-10-2019/having-cancer-as-a-teenager-derailed-my-life-course/