What People Need to Know About Cancer

AYA Cancer Awareness week was April 7-11. About 89,000 adolescents and young adults (ages 15-39) are diagnosed with cancer across the United States each year according to the National Cancer Institute, and in 2022 I was one of those young adults diagnosed with cancer. I had Stage II Hodgkin’s Lymphoma. I was 38 years old at the time, working in New York City as a financial copy editor of analytical reports written by credit analysts. Although the AYA Cancer community has always been present, it has not always been seen and so I am grateful for the weeklong celebration.

In many ways, before my diagnosis, I felt like I was living the prime of my life. As a husband and father of a then four-year-old son, my favorite activity at the time was spending time with my family and watching my son grow. When we have good weather, I take my son to different playgrounds in Southern Brooklyn, as well as the beach in Coney Island. When the weather is bad, I take my son to indoor playgrounds. As an environmental activist, I had just successfully worked with my State Legislator and other community activists to stop a ferry from running to Coney Island that would have caused enormous environmental damage to Coney Island Creek.

The hardest part of being a young adult cancer survivor for me, was that while my life stopped and I needed to take care of my health by going through months of chemotherapy treatment, the world around me didn’t stop. It was hard for me at times to leave the house because the chemotherapy drugs gave my body an aversion to sunlight. I often felt nauseous and needed to take regular nausea medication. Frequently, I wanted to be there for my wife and my son, but I could not because I needed to take naps. My son would want to hug me on the left side of my body, but he couldn’t because my port was installed on my chest, and it was painful to give him hugs. I kept wanting cancer to just be over, the treatment cycles needed to end.

I would take the subway into Manhattan, which is supposed to be one of the most fun places in the world, to go to a cancer treatment center and get ABVD injected in my veins. The pain I felt was unimaginable; working was so difficult. I had a lot of trouble focusing and concentrating because of the off-and-on pain I was going through. After my treatment, side effects of the cancer drugs lingered in my body for the long term even after I got to remission. I still have pain in a lot of my nerves, three years after starting treatment.

However, society treats me like a normal person. While I have overcome a cancer diagnosis and survived treatment, I need to pay the same rent I paid as a healthy person, I pay for the same cost of groceries as a normal person, I try to hold down a job like a normal person, I don’t get any special discounts or treatment in anything I do even though my body feels like it has changed for the worse.

I try to share with others that if I am slower functioning or it takes longer for me to process information that is because I am a cancer survivor, not because I don’t care or wasn’t paying attention to what I was told. I suffer from short-term memory loss. I’m often playing New York Times word games or drawing pictures. That is not because I’m a little kid in a man’s body but because a neurologist told me that is how my memory can best recover. Short term memory loss is difficult because I can remember things like the kids in my preschool class from more than 35 years ago, but I can’t remember my wife telling me a few hours ago that we need red onions when I’m in the produce section of the grocery store.

I want more people to know that for a young adult, cancer is a tremendous setback, but it makes those of us who have survived it much more motivated to live a fulfilling life. Cancer made me think long and hard about human mortality and made me realize that I will not live forever. In the grand scheme of things, human life is very short and so I need to do everything I can to make the most out of my life. Sometimes we do everything we can to be healthy, and we still get cancer. For some cancers, there are known causes, but other cancers like my Hodgkin’s Lymphoma, there is no known cause of the disease.

The best form of support has been from my family. My wife was with me when I had my last chemotherapy treatment, and I rang the bell to end it. Caring for a loved one who is in constant pain is not easy, and my family members can’t always feel my pain after treatment, and I should not expect or want them to.

Healing takes time and I have come to expect chronic illness in the near term but every day I am fighting to fully recover. I take all the medications prescribed to me, maintain a healthy diet and exercise like my life depends on it. I try to find other Hodgkin’s Lymphoma survivors to share experiences and get help and support with the myriads of seemingly unique challenges that I’ve faced.

Throughout my pain, I want non-cancer survivors to know that my cancer survival has never made me love life less. In fact, I think it has made me love life more. Despite my challenges, I’m determined to be successful in all my endeavors and make the most out of my life. I’m constantly looking back and telling myself that the day will come when I use the word “overcome” to describe my relationship with cancer.