In May of 2012, I felt large lumps on the left side of my neck. By mid June, my neck had become visibly engorged. I turned to Google for a diagnosis, and within minutes, I was enveloped by panic. I urged my parents to feel my neck. “It’s probably nothing,” they told me, again and again. “You’re overreacting.”
In late July, a biopsy of a golf-ball-sized lymph node in my neck revealed I had Hodgkin’s lymphoma. PET and CAT scans found a baseball-sized mass in my chest. Surgery was booked to implant my “port” the next week so I could begin treatment.
When my doctors first introduced me to words like “port” and “access during treatment,” I envisioned Iron Man’s glowing energy source. Then they handed me an informational pamphlet. The cover presented an elderly couple on bikes wearing smiles, similar to those in denture commercials, that said “Guess which one of us has it? YOU DON’T KNOW.” Somehow, knowing I would maintain the health of a biking 82-year-old did not feel reassuring.
At 16, I felt out of place in a children’s hospital. The examination beds were too small and the dinosaurs on the wall bordered on condescending. But the people were wonderful. The nurses are experts at taking kids’ minds off their treatment, and their cheerful demeanor is unwavering. The oncologists are the first doctors you might ever regard as friends.
One of my practitioners was a stomach cancer survivor, and I found her presence reassuring from the start. For my first treatment, I arrived equipped with two hours worth of questions. I asked why I was receiving the VAMP regimen instead of the ABVD regimen, which every medical publication I could find had presented as standard.
I wanted to know how old I would live to be, though they confessed they could not provide an answer. I would press them to guess, but they refused. I found comfort in scouring the Internet for every study published on Hodgkin’s lymphoma. I know Hodgkin’s lymphoma patients who undergo treatment have about a 90 percent five-year survival rate. I discovered many researchers believe “five years incident free” to be synonymous with “cured,” which concerned me because – even at 16 – five years doesn’t feel very long.
Now, a 19-year-old sophomore at the University of Wisconsin, I am almost there.
On the first day of school, just more than a month after being diagnosed, I met my friends in the hallway at Nathan Hale High School. When I arrived, they gaped at my hair. I felt like a newborn – except I wasn’t cute and the circumstances of my arrival were a downer. Every interaction – no matter how familiar – felt new. It was like returning to my former school to find everything much smaller and darker than I remembered, even though I knew it was the same. Telling my friends I had cancer felt like introducing myself all over again.
“Nice haircut,” remarked Chloe, who had cropped her own to a pixie cut earlier that summer. “Why did you cut it?” she asked, suspecting I had copied her own.
With 10 girls circled around me, I explained: “I have cancer.” I watched my words register and began to cry. I didn’t want to tell people I had cancer. I didn’t want my cancer to influence their perception of me. They hugged me, and I knew I needed to clarify. “I have Hodgkin’s lymphoma, which has a high cure rate, but I’m losing my hair, and I would appreciate it if you guys ignored it as much as possible.”
After a few months of treatment, I bore more than a passing resemblance to Gollum from Lord of the Rings, if Gollum had retained water weight in his face and sported a Donald Trump comb-over. Early in my treatment, I bought organic baby shampoo and Nioxin in hopes of preserving as much as possible. When my hair clogged every brush in the house after my second treatment, I doubted their effectiveness.
It seems petty to worry so much about your hair when you could die, but – especially and unfortunately for women – losing it is a very dehumanizing experience. Appearance can be an expression of identity, and suddenly, it is out of your control. Many internal and physical sufferings can be kept private, but being bald outs you as a cancer patient.
Still, my experiences at school were overwhelmingly positive. I was engaged in my schoolwork and uncharacteristically relaxed. Few people addressed my cancer.
“For someone in your circumstances, you sure are poised,” said my English teacher, Mr. Mulligan, as I walked with him to the copy room to pick up my readings for the weekend.
I recalled the week after my diagnosis, when I had spent three days alternating between researching my illness and crying into my white comforter. Finally, my mom dragged me out of the house for the first time since my diagnosis to go to Breadsmith. As we drove through Greenfield, I looked out the window of our minivan as the August sun blazed over everyone else’s lives. Kids, sweaty and flushed, drinking juice boxes on their way home from soccer practice, parents rushing to a family gathering later that evening.
I wish I could say it rained for weeks after I was diagnosed, and everyone’s world seemed to stop with my own, but it didn’t. My world was the only one that stopped.
“I wish I were never born,” I told my mom, at the intersection of 76th Street and Layton Avenue.
“Don’t say that,” she said, grabbing my hand.
“But I do,” I said. “I don’t want to die slowly, I want to die fast. I don’t want to feel it. I’d rather be dead than do this.”
Tears could blur my reality but they could not change it. I did not die on that trip to Breadsmith and lived long enough to have someone call me “poised.”
I’ve never seen my dad cry, even when he’s had good reason. My mom claims he teared up upon hearing my diagnosis, but I had punched a button to administer a sedative after they told me, so I don’t remember. My dad’s sadness is well concealed. His composure makes him look like the type of person you would trust to make rational, objective decisions (though he recently purchased a repair kit for his $2 reading glasses). Unlike my mom, I could tell my dad what was upsetting me without triggering any emotional reaction. When I said I wished I had never been born, he said simply, “That makes me very sad to hear, Alexa.” He spoke as one would speak to a child if she were throwing a half-justified temper tantrum. You can’t scold the kid even if she is being unreasonable. When I told him I didn’t want to go to school because I would be ugly and lose all my friends, he insisted that would not happen. And it didn’t.
My mom and dad are very complementary parents. My dad will not validate irrational thoughts, and urges me to move forward. My mom drags me forward. She was the one who coaxed me out of the house after my diagnosis and arranged our meeting with my school counselor. She was the one who convinced me to take a shower when I could no longer run a brush through my hair smoothly and scheduled my haircut the next day.
No one else would watch me stain their furniture with my tears for two weeks and still love me. No one else would preserve hours of footage of my childhood to be revisited every birthday morning. Unconditional love is often underappreciated by those who have it.
My cousin, Samantha, was diagnosed with acute myelogenous leukemia two weeks after my diagnosis. As I crawled around the house, feeling as though all the muscles in my chest had been shredded from the recent port surgery, my mom interrupted me, eyes bloodshot.
“Sam has cancer.” Were it not for the painkillers, which numbed me more emotionally than physically, I likely would have cried. Instead I felt hollow. It is frightening when something “so rare” becomes so prevalent. After hearing of Sam’s treatment – in-patient chemotherapy and full-body radiation in preparation for a bone marrow transplant – I knew I was fortunate.
My cancer no longer felt worth magnifying. I wasted days dreading how my cancer could come to define me, when the extent to which it would consume my life was largely my choosing. My academics and social life were still in my control, and I would not allow myself to disregard that.
After some six months of chemotherapy, I was in remission. Sam, however, spent two and a half years in and out of treatment, until there were no treatments available to her, and she passed away. She was 22.
Mr. Mulligan was easily one of my favorite teachers. Few things escaped his avuncular ridicule, and if you were taking yourself too seriously, he’d call you on it. At various times, Mulligan called my work “pseudo-intellectual” and asked if it was “really necessary that I miss school on Friday” when my treatment was on Thursday.
Mr. Mulligan cared very much about my cancer fight. The week after my final treatment, I missed a day of school for my grandfather’s funeral, and when I returned the next day, he was waiting at my locker, smiling broadly. “So, how’d it go,” he asked.
I sensed a misunderstanding, but I answered, “Fine… I guess.”
His smile tightened. “What did they say?” he asked, and I realized he thought I had gone in for my post-treatment checkup, which I hadn’t yet.
“My grandpa died,” I said. “Yesterday was his funeral. It went well. I guess.”
Mr. Mulligan’s face turned crimson. “I… I’m so sorry!” he fumbled.
I wanted to reassure him I was all right, but he already was walking down the hall.
I suppose we are only entitled to our own emotions. No one’s world is required to stop for another’s misfortune. It’s difficult to appreciate this as a kid. Our loudest nightmares are others’ background noise. But I think we all live to combat that – to be a little less ephemeral – by becoming important to society.
If having cancer made me realize anything, it is that the world is not indebted to me. Every day that I am alive, I’m reminded that I am indebted – to my family, doctors, teachers, friends, researchers and the countless childhood cancer patients who came before me. In the lives of others, there is something that defies an unwelcome destiny: permanence.
Alexa Grunwaldt is a former editorial intern at Milwaukee Magazine. Write to her at firstname.lastname@example.org.