“If I could, I would make the doctors at Fox Chase my primary care doctors. I would see them all the time. You can feel the compassion of the people working there.”
I started out 2021 as an active, healthy 26-year-old transgender man. I was an avid hiker. I was engaged, and I was on my way to a promotion at my job. But by early 2022, I was also a cancer survivor living with HIV.
A New Reality
In March 2021, I hurt my knee while hiking with a friend in Shenandoah, Virginia. I didn’t think much of it and treated it like any other injury—ice, elevation, and rest. The pain persisted and within a couple of weeks I noticed that I was dragging my leg at work. I visited a walk-in clinic and was told that nothing was broken. The doctors put me in a brace and prescribed physical therapy.
From April to June I continued physical therapy, but eventually my physical therapists agreed that something weird was going on. Despite all the work we had been doing, my knee looked worse than when I started. I went for a second opinion on the injury and was told to get a follow-up MRI.
On June 7, while sitting on my best friend’s porch, I got the phone call telling me I might have cancer.
I was overwhelmed and completely stumped. What was I going to do? How was I going to go home and tell my family I had cancer? It took me a couple of hours to work up the strength to break the news to my mother, who already had so much to deal with.
Finding an Expert
Once I found out I had cancer I knew I wanted to go to Fox Chase Cancer Center. Initially, I went to see Dr. John A. Abraham, a surgical oncologist who specializes in sarcoma. At that visit, I had a fever and chills. I was sweating and couldn’t get comfortable, and then I started vomiting. Almost immediately, Dr. Abraham said that he didn’t think I had bone cancer. He told me he thought I had lymphoma.
By chance, one of the best lymphoma doctors around happened to be next door. She was not even supposed to even be in the office that day. Dr. Abraham left the room to speak with the hematologic oncologist, and while they were discussing my case I started calling for help. They came back in the room, put me on a stretcher, and admitted me for immediate testing.
My first appointment at Fox Chase turned into a five-day stay to figure out what type of lymphoma I had and why I was so sick.
Physical and Mental Health
After that initial stay, I was immediately started on chemotherapy while they waited for the results of my biopsy. On June 23—Father’s Day—I got my biopsy back and was told I had Burkitt lymphoma. It’s very aggressive and my doctors told me we had to act quickly.
That was not the only diagnosis I received that day. My doctors also told me that I was HIV-positive, which is a common risk factor for Burkitt lymphoma.
When I heard this news, I remember looking at my mom, my social worker, Lisa Etkins, and my doctor. I couldn’t find any words. They told me that HIV can stay dormant for up to 10 years. That is when I knew why I had HIV.
I am a survivor of sexual assault. Before I transitioned, I was sexually assaulted in the military. Hearing I had HIV ripped open an old wound. That assault is what caused me to have HIV, and HIV is what caused me to have cancer … during a pandemic.
After I found out I had HIV, Lisa looked at me and said, “You are going to be OK.” She gave me the strength that day to get on the stretcher and go start treatment.
I love Lisa so much. Every time I go to Fox Chase I let her know weeks in advance just so I can see her. She has done leaps and bounds to make sure I am OK, to make sure I am comfortable, and to make sure my mother is OK.
A Hard Road
The treatment for Burkitt lymphoma is very aggressive. Unlike a lot of patients that visit infusion suites for chemotherapy, my treatment was in-patient. The treatment had two parts. I was admitted for five days for the first part of my chemo treatment, then I was home for about a week before I went back for another five days to receive my second round of treatment.
Both treatments required that I have lumbar punctures to evaluate my spinal fluid and look for cancer cells. In the week between treatments, I still had to visit Fox Chase to have blood work done and for COVID testing.
After every in-patient stay I also received rituximab, a monoclonal antibody, to treat my lymphoma.
In addition to dealing with my cancer diagnosis, I had the added stress of worrying about how my diagnosis would affect my gender-affirming hormone therapy, which I had been on for five years.
Throughout my cancer journey, I had the full support of the people at Fox Chase. Dr. Robert Bettiker, an infectious disease specialist at Temple University Health System, managed my HIV. He was also able to monitor my testosterone levels during all of my treatment, which was important because I administer testosterone using a topical gel. I was able to continue to apply my testosterone every morning, and when I didn’t have the strength, someone at Fox Chase would put on gloves and do it for me.
Although treating my cancer was the priority, my doctors were also watching my HIV. By August, it was considered undetectable. I have finished my treatment and I recently had my second follow-up scan in February. Things are still all clear.
Change of Plans
These diagnoses changed my plans for 2021 quite a bit. I was forced to go out on disability, which was difficult because I was so close to earning a promotion at work. The timing was awful. I was also supposed to get married last October, but because of the cancer, everything was postponed.
Things are starting to return to a new normal, though. I have gone on three hikes since I finished treatment, but it was a long road back. First I was on crutches, then I used a walker, then a cane. Now, I am back on my feet and working full-time again.
Before my experience at Fox Chase, I hated going to see doctors. I hated needles. Now, if I could, I would make the doctors at Fox Chase my primary care doctors. I would see them all the time. You can feel the compassion of the people working there.
I turned 27 during my last in-patient stay at Fox Chase. The staff brought me a cake, sang me happy birthday, and made sure my 27th birthday was a memorable one.
Learn more about treatment for lymphoma at Fox Chase Cancer Center.