Almost 40 years ago, at the age of 25, I was diagnosed with Hodgkin lymphoma. At the time, the doctor told me it was curable, which was encouraging, but I remember thinking: “Yeah, but it’s still cancer.” I was worried I was going to be sick and sickly for the rest of my life. Furthermore, there was no Stupid Cancer or any other support organization that recognized the unique experiences of young people going through cancer to offer them encouragement and support.
In thinking about what to write for my Stupid Cancer story, I recalled four events from my own cancer experience and considered how they have influenced my life, including my career as a cancer care provider (oncology social worker), a scientist, and an advocate for equity and fairness.
Becoming a radio DJ:
Upon returning from my oncologist’s office following chemotherapy infusions, I would climb into bed and remain there for a couple of days to allow the waves of nausea to pass. For a few hours, I’d just sleep. Later, I would lean over and turn the radio dial back and forth, listening for whatever captured my attention: news, sports, music, or talk shows. Within a day or so, I would garner the energy to walk down to the kitchen and make myself something to eat. For the first few months of treatment, I mourned all the things I could no longer do: hiking, bicycling, work, etc. I eventually realized how debilitating that meaning I had attributed to cancer was for me. By this time, I’d heard the term “positive attitude” and came to define positive attitude for myself in terms of what I was capable of doing in any given moment, as opposed to what I was NOT able to do.
Tatiana takes me to see the guru:
Chemotherapy made me desperate to try anything that might alleviate my fears and suffering. My cousin Tatiana suggested taking me to see her spiritual teacher. I was skeptical, but the experience opened me to becoming more engaged in my own care. I recognized that it was up to me to figure out what would help me feel better. Turned out that the guru was too weird for me, but I was glad that I was open to the experience.
Meeting another young adult cancer survivor at a support group:
For young people with cancer, the power of peer support is evident. Survivorship can be modeled by others’ experiences. As a patient back in 1986, the most powerful and memorable intervention for me was meeting a seemingly healthy young adult who had successfully completed therapy and moved years beyond his treatment. It created a hope for who and what I could become after my cancer treatment.
The administrative judge:
Needing to quit my job and move back in with my parents quickly depleted my life savings. Unable to work, I qualified for Social Security Disability Insurance (SSDI) benefits, at least from what I could tell from reading the eligibility criteria. I applied but was denied. I appealed, as per my rights, and again received notification of denial. At that point, the Social Security Administration permitted one last appeal procedure. This time, I could make my case in-person, before an administrative judge. I did just that and the judge approved my appeal. Afterwards, I asked the judge, “What happens to people who do not have the means or family support to get this far in the process?” I wanted to know why I, or any cancer patient, would be subjected to this laborious process simply to ensure a livelihood while disabled by cancer. The judge just shrugged. This experience opened my eyes to the inequities and injustices embedded in the United States Health Care Industrial Complex that must be addressed.
As a cancer survivor who now conducts cancer research, I want to better understand the entire impact of cancer on people’s lives. The images and memories of my own experience with cancer inform my work and assist in my understanding of what patients and survivors say about how cancer has affected, and often continues to affect, their lives. I am committed to identifying the long-term effects for patients and their families and determining how we may be able to limit those effects and assist people in their recovery.
By: Brad Zebrack