I have been fascinated with death since I was 3 years old. I remember going to my great-grandfather’s funeral and asking my mother where my great-grandfather was. She said he is in heaven. I asked her if I were going to heaven, too, and she said, “Yes, but not for a long time.”
Today, I don’t believe in an afterlife. I just think of death as the end of life. I know that sounds morbid, but I’m actually quite an optimistic person. Everyone is going to die, so there is no point in wasting time brooding about it. I do have mini-existential moments when I think “what is the point of life,” but then I realize it doesn’t matter if I know or not. It doesn’t change the way I live my life. Cancer has shaped my new reality.
In 2012, when I was 16, I began feeling extremely fatigued and started having frequent nosebleeds that were difficult to stop. My parents took me to the emergency room at Children’s Hospital in Los Angeles, where I was diagnosed with acute lymphoblastic leukemia (ALL). At the time, I really didn’t understand what that diagnosis meant. I was told by the attending physician that with treatment, I could be cured of this disease, so I thought of cancer as having an infection that could be remedied, and then I’d be well again. I don’t remember feeling scared. I just thought of the diagnosis as a minor setback, and I was anxious to get on with whatever were the next steps. But those next steps meant years of difficult treatment and two cancer relapses before my life got back to some semblance of normalcy.
My initial chemotherapy regimen included three phases of treatment: induction, consolidation, and maintenance; it took 3 years to complete but only resulted in a brief remission. In the fall of 2016, just a few months after finishing treatment, I began noticing the vision in my left eye was blurry, and it was difficult to see. A complete ocular and neurologic evaluation found that I had retinal vasculitis, a rare and isolated manifestation of a relapse of ALL. The diagnosis was followed by about 2.5 more years of chemotherapy and radiation therapy, which restored my sight and put me in another short-lived remission.
In June 2020, at the height of the COVID-19 pandemic, I began experiencing all the symptoms of the coronavirus, including body aches and high fevers. However, blood tests showed my white blood cell count was very high, a red flag the cancer was back. A bone marrow biopsy confirmed its recurrence. This time the treatment was even more aggressive and grueling than the previous two. I underwent two chimeric antigen receptor (CAR) T-cell therapies, the second one was part of a clinical study investigating patient-derived xenograft models; more chemotherapy and radiation therapy; and an allogeneic stem cell transplant.
As of today, I am cancer-free.
Getting on With Life
Cancer robbed me of my adolescence and threatened my young adulthood. I don’t know exactly what kind of life I would have had if I hadn’t gotten cancer, but I’m positive by now I would have a career in education. Although I recently completed my master’s degree in philosophy, I feel I’m lagging behind my peers in reaching my career goals, and that I’m always playing catch up.
My life is a series of contradictions. I think I’m much more mature than my peers because of my cancer experience, but I can also be more impulsive. I don’t know how long I have to live, I reason, so I take chances, which could be good and bad. On an intellectual level, my perspective is there are worse things in life than cancer, and I don’t let the small disappointments bother me. I don’t tolerate minor life complaints from others either. Life is too short.
Asking for More Than Just High-Quality Care
As a first-generation Latino and gay man, I have always been grateful just to have high-quality care that has saved my life. I felt it would be rude, selfish, or inappropriate to ask for more while I was undergoing treatment, such as adequate emotional support and sexual health counseling, so I never explored those aspects of my care with my oncology team. I also felt their focus was on my survival, which is, of course, the paramount goal. However, I think good medical care should encompass the full human experience.
Living My Best Life
Recently, I witnessed an elderly man getting hit by a car while he was walking in a pedestrian crosswalk. Fortunately, the man was not seriously hurt. However, the experience brought home just how fragile life is, whether you have cancer or not, and how important it is for me to live the best life I can with whatever time I have left.
Three years ago, I was dealing with a second cancer recurrence, and I could be dealing with a third recurrence or a different serious hardship in the future. Having cancer has helped me in a pragmatic way to make the most of the time I have right now and to try to enjoy living in the moment as much as I can.
Mr. Peralta lives in Inglewood, California.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.