By Daniela Hoyos
Inhale. Exhale. Flip the pillow over to the cooler side. Try another position. Take a sip of water. Try not to check the time. Rinse and repeat.
I groaned in frustration at the illuminated numbers on my alarm clock displaying the time to be 3 a.m. while my brain was yelling at me about a million different things. You should be sleeping. You have classes tomorrow. Your roommates hate you. Your parents are in danger. Just go to sleep!
Okay, maybe those last few thoughts were unlikely to be true. I felt 99.9% sure of that. However, that 0.1% of myself had been extra loud lately. So how did I get here? Let’s go back a few years.
When I was 7 years old, I was diagnosed with stage 4 non-Hodgkin’s lymphoma after months of complaining about an endless stuffy nose. While I do not remember too much from that time, I do recall a haze of pricks, spinal taps, painkillers and chemotherapy side effects. Luckily, the rapid and intense chemotherapy cycle yielded amazing results: I was declared cancer-free after three months and entered remission in time to complete second grade alongside my classmates. I could go back to being a kid and live the rest of my life as if nothing ever happened. If only it was that easy.
Not even a full year after I entered remission, I was contacted by the hospital to appear in a promotional video. That event began my career as a childhood cancer advocate, leading me to speak in front of crowds at fundraising events, attend research conferences and even prompt me to begin a YouTube channel where I gave tips to other young cancer patients. I was meant to share my story and avenge the other children, my friends, who I had lost to cancer. I was bold, proud and fearless.
Except that I was scared to go to sleep.
For months, I would cry in panic every night to my parents as I begged them to stay with me until I fell asleep. Eventually, it got to the point where my parents and I were both tired enough to send me to a religious therapist recommended by my Catholic school. When I complained about not wanting to fall asleep, she simply recommended that I take melatonin gummies.
For a while, it was effective. Once it stopped being effective, I would just increase the dose. In high school, I began to suffer from panic attacks when I was supposed to get behind a lectern and speak about my experiences. I would experience gastritis flare-ups and stop getting my period during months of intense stress. I would have meltdowns if I did not get an A on a pre-calculus test. Sometimes, I would cry every night for weeks at a time, complaining of an inexplicable weight on my chest and sadness in my heart. By the end of my first year at the University of Florida, I was taking 12 milligrams of melatonin, which was the maximum dose I could find in drugstores. I would still struggle to sleep a full night even as my muscles throbbed from overexertion, and I struggled to stay awake and focus during my classes.
That summer, I started seeing a therapist after my parents and closest friends grew concerned. While I initially began with the intention of addressing my body image issues, my therapist and I pinpointed the primary culprit of my troubles: anxiety. It was anxiety that pushed me to pick at my cuticles until they bled or encouraged me to binge-eat an entire pint of ice cream and guiltily log the calories.
I also learned that I was not alone in my experience. Studies show that survivors of child and adolescent cancer are more likely to have clinically significant anxiety than their siblings and the general population. Survivors are also more likely to meet full or partial diagnosis criteria for post-traumatic stress disorder and have stress-related mental illnesses.
It was not surprising to me that childhood cancer survivors experienced poorer mental health outcomes than their peers without a history of cancer. However, it was difficult to admit to myself that I could be part of that statistic.
When my therapist broached the subject of medication for my anxiety, I instantly declined. My anxiety was as natural to me as breathing, and just as I needed oxygen in my lungs to function, I also relied on that voice in my head to ensure that I stayed at the top of my game. Without the constant pressure in my chest, would I lose all the things that made me who I was?
Another year passed. I attended therapy and slowly but surely healed my relationship with myself. My biggest motivator was my planned summer internship in Dublin, Ireland. However, once I arrived, I was incredibly lonely and felt hyper-aware of every glance a stranger spared on me.
When I described my feelings to a coworker, she recommended exploring medication for my anxiety. The peace she was describing sounded amazing. Something finally clicked. I realized that I owed it to myself to inquire about medication for my anxiety. I brought it up to my highly logical and independent Hispanic parents, expecting them to be skeptical. I thought they would insist that I was exaggerating or making up problems, since I had that fear myself. But instead, they agreed that medication would be a good idea to explore. Next, I brought it up to my therapist, and she agreed.
At a follow-up appointment with my oncologist, I talked to the social worker who had first met me when I was diagnosed. When we were catching up, I mentioned my recent inquiry about medication, and she affirmed that I should explore it. My oncologist mentioned how mental health care is becoming more common as part of the standard of care for survivorship. Experts recommend surveillance of all childhood, adolescent and young adult survivors for depression, mood disorders, anxiety, behavioral problems, psychological distress, post-traumatic stress and suicidal ideation. Prompt referral to a mental health specialist is advised for survivors with these symptoms.
I was forced to examine my own biases. I have never judged someone for seeking out healthcare, but when it came to myself, I struggled to accept that I needed medication. I shared these concerns with the psychiatric nurse practitioner during my virtual visits with her, and she reassured me that we would work together to find the best option for me. After a two-hour visit filled with lengthy surveys and eye-opening conversations, I had a prescription for 20 milligrams of fluoxetine, the generic name of the antidepressant and anti-anxiety medication Prozac.
I took my first dose the next day. After three days, the side effects began to rear their ugly head. In my first week back to school, I was barely able to sleep and felt like I was losing my mind. But I soldiered on and took my daily dosage.
After six days, the insomnia finally stopped. Then, after nine days, I realized how happy I was. I was finally sleeping, enjoying my courses and adjusting very well to my new job. All the things that had once felt like too much finally felt conquerable.
It is imperative that childhood cancer survivors receive mental health care during treatment and throughout survivorship. There should be more discussion about the psychosocial impacts of childhood cancer and the possibility of late-term effects. More importantly, I want others like me to examine their own internal biases and preconceived notions regarding mental health. The journey is ongoing, but I am glad I was brave enough to embark on it.
Daniela Hoyos is a third-year public health major.
“My public health story” essays originated from an assignment on public health storytelling for a public health messaging and dissemination course led by Brittney Dixon-Daniel, Ph.D., M.P.H., director of the Bachelor of Public Health program.