Surviving college with cancer - North Carolina Health News
By Anne Tate
UNC Media Hub
Aimee Comanici was never allowed to dye her hair funky colors. But the day after being discharged from UNC Hospitals, her mom, Julie Gorham, gave the go-ahead.
Barely a week later, Aimee ran her fingers through her wet, soapy hair and a clump of newly-purple locks came out. Alarmed, she jumped out of the shower. She stared at herself in the mirror and pulled out another piece of hair. It was like the strands were glued to her head, not in it. She felt no pain. She was scared. She ran downstairs.
“Mom, it’s happening,” Aimee said.
Another week passed and Aimee found herself back in the chair at Thairapy Hair Studio in Greensboro. In the middle of the salon, the hairdresser picked up the buzzers and shaved Aimee’s head. Tears streamed down her face. Everyone around her watched with wet eyes.
“You look beautiful,” someone said, breaking the silence.
For the first time since her diagnosis, Aimee finally understood the reality that she had cancer.
Is it college? Or is it cancer?
In August 2017, Aimee moved from Syracuse, New York, to Chapel Hill, North Carolina, to attend UNC – just four months before her diagnosis. She settled into Ehringhaus Residence Hall. She made new friends. She joined UNC’s chapter of Habitat for Humanity. She studied for Spanish 203.
Aimee thought the drenching night sweats were just a part of her acclimation to Southern weather. She thought her fatigue – causing her to sleep up to 14 hours a day – was normal for a first-year college student. She thought the reason the left side of her neck was sore and swollen and that her arm hurt was because she started working out more. She brushed off her symptoms.
Within days, the pain got exponentially worse. She went to UNC’s Campus Health, where the doctor prescribed antibiotics for an infection.
Two days later, Aimee had trouble breathing. She arrived at the hospital around 10 p.m.
Ultrasound, chest X-ray, CT scan – it was now 2 a.m. The emergency department’s attending physician predicted cancer. At 6 a.m., an oncologist agreed and Aimee was admitted to the pediatric oncology floor for eight days.
A biopsy and PET scan confirmed it. Aimee was officially diagnosed with Hodgkin’s lymphoma, a cancer characterized by malignant cancer cells in the lymph nodes, on Dec. 8, 2017.
Aimee doesn’t remember the moment she was diagnosed, surrounded by family and friends. She forgot about the UNO card game she played before the resident walked in and that her suitemate, Grace Fowler, held her hand. She was in shock.
Although Hodgkin’s has a high survival rate, Aimee’s cancer grew abnormally quickly and her doctors worried about a superinfection. In just 24 hours, her lymph node mass doubled in size. Despite this irregularity, her doctor was confident she would recover.
“She is going to have a bumpy detour, but her destination will be the same,” the oncologist said.
Aimee asked a lot of questions.
“She really wanted a game plan because you can be told you have cancer, but what does that really mean and what does that mean your life is going to look like?” Grace said.
Aimee felt numb – she cried a lot, slept a lot, and was overwhelmed physically and emotionally.
She started her first round of chemotherapy in the hospital during the week of her freshman year fall semester final exams. A few days later she was discharged and continued her treatment outpatient.
When freshman year froze
The nausea and dizziness were overwhelming, and Aimee’s body rapidly switched from burning up to freezing cold. She was terrified, and her anxiety exacerbated the symptoms. No medicine helped. No blankets helped. No ice helped. No food helped.
For the first and only time during treatment, Aimee felt like giving up.
“I want to stop fighting. I’m done. I can’t take feeling like this anymore,” she said to her mother, sobbing.
Aimee struggled to climb the stairs to her room. She collapsed in bed and finally, some of the medication kicked in.
As a college student in the pediatric oncology unit, Aimee felt like her treatment took place in a space designed for kids younger than 13, rather than 18-year-olds. During one of Aimee’s first days of chemo, a 12-year-old guided her through the process.
“My age was really awkward because I was sitting in a chemo chair staring at 3-year-olds playing with bricks on the ground,” Aimee said. “I don’t know how to talk to a 3-year-old in treatment. Or I could have been sitting down with 50-year-olds.”
During her six total chemo cycles, there were days she felt close to normal, and there were days no combination of medication could touch her pain. Day eight of each chemo cycle was always the worst.
“We quickly learned we had to go straight home because we had exactly 60 minutes to drive home before I started feeling like s—,” Aimee said.
Instead of finishing her freshman year on campus, Aimee moved into her mom’s house in Greensboro. It felt like high school again, she said. She finished her fall finals in February and withdrew from the spring semester. She left behind the new life she spent months building and any hope of a normal first-year experience.
“Freshman year a lot of random stuff happens. And a lot of exploring happens,” Aimee said. “Frat parties and dumb mistakes and figuring out who you are and who you want to be in college and your friend group. Your priorities start shaping up freshman year.”
“I definitely distanced myself from people and I think people definitely distanced themselves from me. It’s such a big thing to ask a lot of people to go through with you when you’ve known them for a month or two months,” she said.
Instead of worrying about exams, UNC football and finessing bands to parties, Aimee fought for her life.
Back but not entirely better
Aimee is blunt, yet kind, with a contagious laugh and smile that creeps through even the monumental anxiety of chemicals being pumped into her body.
After months of staring at the four same walls and watching every episode of “Law & Order: Special Victims Unit,” Aimee got the call that she was in remission on May 9, 2018.
Aimee returned to UNC the following fall. Her scans were clear, but the cancer’s effects were far from gone. She started her sophomore year with PTSD, increased anxiety and distorted self-esteem. She felt self-conscious about the short, curly hair she’d never had before. She worried that her check-up scans would light up with cancer again. She had to think about whether she wanted kids.
“The cancer kind of killed my fertility,” Aimee said.
Aimee’s cancer grew so quickly that there wasn’t enough time for pre-treatment fertility preservation. She saw a specialist six months after she finished chemo, who confirmed her fertility levels were low. Aimee froze 12 of her eggs that summer so she has the option of having kids in the future.
Aimee’s New Normal
When COVID-19 shut down the world last March, people used the phrase “new normal” to describe quarantining. For Aimee and other cancer patients, their new normal started well before the pandemic. The phrase is triggering – it means something entirely different to Aimee.
“Your new normal is fighting for your life,” Aimee said. “Getting chemo, eating food if you’re hungry, taking Prednisone and taking your meds and getting back up and going to chemo.
“You have to very quickly get used to trying to fit in to who you used to be, but you’re no longer who you used to be.”
A detour that made way for new destinations
When Aimee arrived at UNC, she thought she wanted to be a public relations and global studies double major, but after battling cancer, her attention shifted to the STEM field and UNC’s radiologic science program. After college, she wants to work in a cardiac catheterization laboratory and then go back to school to be a physician’s assistant or nurse practitioner.
Aimee volunteers at the hospital and is a member of the Adolescent and Young Adult advisory board at UNC Hospitals. Her latest project: helping to design an infusion space for other patients her age. She hopes the space will help foster more relationships during treatment, so people like her can be treated like a young adult, not a kid or an 80-year-old.
“She knows what she wants and she will have that happen and make that happen for herself, no matter what,” her mother said. “And I think that’s a consequence of knowing that, ‘OK, my body can turn against me and it’s up to me to make things happen for myself and be that advocate.’”
Aimee will graduate from UNC this year. She is still in remission.
This story comes from the UNC Media Hub, a multidisciplinary course in the Hussman School of Media and Journalism at the University of North Carolina at Chapel Hill.