I am a 25-year-old transgender man who won a hard-fought battle with stage 3 Hodgkin’s Lymphoma just after graduating from college in 2015.
My story begins with a good friend. One night in April, we were hanging out around the house and they caught a glimpse of my neck under a particular light and said, “Hey, come here for a second-- your neck looks pretty swollen.” We both looked in the mirror and noticed something protruding from the space where the left side of my neck met my clavicle. I called my doctor’s office and made an appointment for the next day.
That appointment was the first of many in which I found myself in a state of desperation for some kind of explanation but my questions remained unresolved for several months. Multiple medical professionals downplayed my swollen lymph nodes as side effects of a medical procedure I had a few months prior. Ultimately, they weren’t concerned. They said there wasn’t much more they could do for me unless I went to consult the surgeon who had performed the procedure. With seemingly no other option, I made an appointment to see my surgeon. Granted, it was now late June and the first appointment they had available was in August.
Some time passed and the swelling had progressed. In retrospect, I suppose I could have given it a quick WebMD search or poked around to try to find another clinic for a new perspective but I figured it probably wasn’t worth the hassle as several providers had already checked. After all, aren’t we supposed to trust our doctors?
Come early August, I rented a car and drove about 2 hours north to see my surgeon in Marin. Once he saw me, he confirmed what I had known: this wasn’t from him. He asked for my regular clinic’s contact information and rang them in the exam room, ordering that they give me an x-ray as soon as possible. Given his sense of urgency, I knew that something was wrong. I wanted to enjoy what was left of my short excursion before whatever was to come, so I decided to stop at a viewpoint overlooking the Golden Gate Bridge. The light was growing dull but nevertheless upheld the timeless backdrop. Amongst the many eager tourists and families, I revelled in every trace of innocence that, unbeknownst to me, I was about to lose.
The following day I went in for the x-ray. After reviewing the results, my PCP sat down and scooted close to me. She looked me in the eyes and said, “It looks like there’s something in your chest. I’m concerned and I’m going to refer you to a specialist.”
In comparison to the handful of times she had assured me that she wasn’t concerned about whatever this was, her tone seemed to have collected all of that previously-expressed nonchalance and transformed it into something bordering fright.
I received a call about an hour later and scheduled an appointment with the new clinic for the next day. I don’t recall whether or not the clinic name was mentioned. Even if it had been, I would have assumed my issue was on the hematological rather than the oncological side. I would have never imagined both.
The next morning, I woke up to a text from a friend who would soon offer to give me a ride to my appointment. They showed up at my house in their bright yellow, sticker-clad Chevy coupe. We had a regular light-hearted conversation before they dropped me off. While diving into the standard paperwork, I was surprised to learn that the first portion of my visit would be a finger prick. I was then taken into an exam room where the main focal point was a heavily-cushioned black recliner. About 15 minutes later, a doctor came in and greeted me briefly before writing words on the whiteboard all ending in “-oma.” Quickly understanding why my PCP had seemed so worried after my x-ray the day prior, I stopped him.
“I’m sorry, hold on— those are all types of cancer.”
He stopped writing, looked at me, and said, “This is a cancer. Did no one… tell you that?”
No, no one had told me that.
I bounced back and forth between states of consciousness throughout the rest of our conversation. He was optimistic but strikingly honest— he said I would probably get through it because I was young and strong, but warned that the next 6 months to 1 year of my life would be hell. I had never heard such a strong statement from a doctor before. Of everything he told me, I took that sentiment to heart.
After scheduling a follow-up visit, I called my friend with the bright yellow car and let them know that they could come back around. Our conversation on the way home was strange, to say the least. I told them what I had learned and they were remarkably calm. They assured me I would be okay and I kept wondering if they had understood what I said.
I remember almost every detail of that weekend-- getting a job the next day, meeting up with my friends at The Bagelry and stumbling over the truth through a broken voice, going home to find the half-drawn shades casting light over my housemates’ speechless faces, and ending up at the beach at dusk once again, recognizing that my doctor was right; I was about to go through hell, but it would be the people tossing rocks off that cliff with me who would get me through.
After another few weeks consisting of a few scans and an incisional biopsy, I learned that I had stage 3 Hodgkin’s Lymphoma, a very aggressive but treatable form of cancer. I began treatment on September 10, 2015.
During my entire 6 months of chemotherapy and 3 months of recovery, my fight or flight responses had simmered to a continuous dull roar. I worked diligently, only calling out sick twice. On my days off, I found freedom in biking down every street and stretch of Santa Cruz coastline. I felt every day so deeply.
With the help of my family regularly driving up to Santa Cruz and a few immensely incredible friends, I fought surreal circumstances. The house I lived in was abysmal for someone in my condition; sparse heating, endless bacteria, nauseating smells (including fumes from a decomposing rat somewhere within the walls) and secondhand smoke from my rambunctious housemates wafted from room to room. At the time, I was living in an attic accessible only by an unstable ladder. Once my PICC line was installed, it was no longer advisable to sleep in my own bed. However, one of my housemates understood that I needed a quiet place to rest and opened her room for me to share with her. At the time, she was volunteering with WomenCARE, an organization dedicated to helping women navigate their cancer diagnosis or that of a loved one. Her compassion was life-saving.
After 12 infusions of ABVD (well, mostly AVD once Bleomycin became too toxic for my lungs) and a few weeks of daily Neupogen injections to stir my immune system, I finished my treatment and was given a strong prognosis for recovery. I am incredibly lucky to be in remission today.
However, there’s some residual frustration. I’m often approached with questions expressing some falsely-perceived intersection of my cancer history and gender identity (for example, “Was this caused by your transition? You’re an unusual case, huh?”). These echo stories of some medical staff’s negligence of transgender folks, specifically those navigating chronic or otherwise threatening disease (a phenomenon known as “Trans Broken Arm Syndrome”). This experience has driven my commitment to raise awareness and build the knowledge necessary for providers to embrace us as patients, honor our identities and protect our livelihood.
Overall, I tend to remind myself that it could have been far worse. As troubling as it was, that series of events was invaluable-- even humorous in some admittedly ridiculous ways (for example, when my friends accompanied me to a free Smash Mouth concert on the beach a mere 10 hours after a small army of lymph nodes had been removed from my neck). In fact, I’ve created my catharsis through writing a series of short stories that might reach and distract those facing a similar reality.
I’ve had a fair amount of time to comb through my experiences and pick out every silver lining that I was unable to recognize in the moment. Maybe I reflect more than I should, but there’s peace in what I’ve found. I am endlessly grateful for the folks who helped me find my own definition of resilience. I've carried it with me ever since.