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College and Cancer

by Hedda PhanSurvivor, GangliogliomaMay 24, 2023View more posts from Hedda Phan

My AYA Experience: College and Cancer 

Having been a class of 2020 student, I spent my first year of college at home, taking my classes online. I hung around with my old friends in my old neighborhood, itching to get away to something new. When I received my housing offer for my university’s dorms my sophomore year, I was ecstatic. Finally, I was about to embark on a new journey—the one that had been so delayed. In September, my dad drove me down to Los Angeles and moved me into my dorm. And so a new chapter began.

I went out every night, I met so many new people, and I did the absolute most I could (to the slight detriment of my grades). Then, one night in November, I found myself in the ER at 5 in the morning. I had had a grand mal seizure. My poor roommate had awoken to our shared bunk bed shaking and found me foaming blood at the mouth. After that incident, my PCP referred me to see a neurologist and to get an MRI. Of course, I was not worried. Everyone was telling me that “we are all allowed one seizure in our lives.” I simply assumed that I had gotten that one seizure out of my system. Smooth sailing from here, right?

My MRI came back and my doctor told me they had found a lesion that might be a tumor. So I went in for another MRI. The night before my Econ 101 midterm, I got a phone call from my neurologist. His tone was so apologetic. “You have a brain tumor,” he said. I was studying with one of my friends at the time and he watched my face fall. I immediately called my parents and we cried and cried. I had just moved out and was so excited to be starting my “adult life” and now here I was. Alone in a big city with a brain tumor.

I wanted to stick with my classes and make it through to the end of the quarter, but at some point, it became too much. It hurt my pride, but it was necessary, so I dropped most of my classes. My friends, of course, stayed in those classes, and it was truly an isolating experience. I could no longer relate to these people, and they didn’t really know what to say. I tried to make light of the situation, holding a naming contest for my brain tumor. We landed on Bernadette.

At 4 am on March 15, my mother and I headed to the hospital. She had flown in to be with me. They used a wire cutter to cut out my piercings and drew a mark on my right temple to make sure they performed the surgery on the correct side. That was when it became real. I had a brain tumor and I was about to get brain surgery. The nurses wheeled me into the operating room and stuck a few IVs into my arm. The last thing I remember was the feeling of warmth in my veins as they injected the anesthesia. Next thing I knew, I was waking up in the ICU. I immediately panicked, thinking I had slept through brain surgery and missed it. “Did it happen?” I asked my mom. “Did they do the brain surgery?” She nodded. I had been under for about 8 hours. My poor mother had been twiddling her thumbs in the waiting room all that time.

I spent four days in the ICU—a bit of a traumatic experience—but by the end of it, I could walk again. After discharge, my mom and I spent two weeks in the hospital hotel, walking laps around the lobby. I laid in bed, scrolling through Instagram posts of my friends’ spring breaks in Cabo. I would be lying if I said it didn’t make me angry. What did I do to deserve this?

I have come to realize the value of my misfortune. I like to think it made me stronger, as cliché as that sounds. I definitely think it aged me, what with managing all those prescriptions and medical appointments and my symptoms all on my own. It brought me closer to my family who I had worked so hard to try and get away from by going to college. At the end of the day, they are the people I will always be able to count on.

It took almost two months for the pathology to come back on my tumor. It went through pathologists, the head of neuropathology, and even the NIH before they figured out the tumor type. That was the first time I heard the word: cancer. I suppose I feel like a fake cancer patient because I didn’t even know my tumor was cancerous until it had been removed. It is a weird thing to think about. Based on the growth rate, I had had this tumor since childhood, perhaps even since birth. Sometimes I wonder if it was supposed to kill me. Was that supposed to be my fate? It is a depressing thought, one that my therapist always chastises me for thinking.

The AYA community has made me feel seen. I don’t have any friends who have gone through the same thing, thank God, but it is certainly isolating. I don’t have anyone in my immediate life that can relate to the things I have gone through and continue to go through. Being an AYA is difficult. It is confusing. You want to prove your independence and maturity, but it is okay to ask for help. It is ok to admit to your family that you still need them. Because maybe you do. Some days are good and some are bad, but this is my life and these are the cards I was dealt. For my own sake, I have to make the most of it.

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