Surrounded by three doctors in the hospital room, with his family living on the other side of the globe, Robert Lee ’17 was incredulous when he received his diagnosis.
“You’ve got to be kidding me, right?” he asked the doctors.
Just days earlier, he had been going about his normal routine — singing with the Jabberwocks, going to class, riding his bike. After a rambunctious a cappella performance during Family Weekend in which he had been jumping, running and rolling around the stage, he woke up the next morning with back pain. Brushing it off as a minor bruise, he followed Health Services’ advice to take some Advil.
But the stinging persisted. In the next few days, the sharp pain escalated to a “13 out of 10,” he recalled. He found himself unable to focus and perform routine tasks, so he decided to call EMS.
After an ambulance ride to Miriam Hospital, several diagnostic tests, conversations with numerous doctors and hours of waiting in the hospital room, the doctors returned with news: Lee’s body was producing abnormal white blood cells, an indicator of acute lymphoblastic leukemia.
While many students spend all four years at Brown happily contained within the College Hill bubble, those diagnosed with major illnesses are jolted into confronting an unexpected set of challenges, dealing with the complexities of leave-taking, managing hospital visits in different cities and confronting a host of other issues.
Once he came to terms with the diagnosis and the whirlwind of action had subsided, Lee was confronted with practical decisions about if and how to continue with his education at Brown. Leukemia treatment would require chemotherapy and radiation, and he would be battling symptoms of fatigue and weakness at the same time. Piling homework, essays and exams on top of all the physical turmoil would have made for an arduous semester.
Reluctant to leave Brown just a few months into his first year, Lee initially planned to complete enough academic work to receive a reduced amount of class credit. But once his treatment began, the disease became a full workload in itself.
“Obviously he didn’t manage to write a line, and we had to face the reality that it was going to be a marathon and uphill battle to fight,” wrote Rosa Ling P’17, Lee’s mother, in an email to The Herald. Because Lee’s parents live in Hong Kong, they were unable to be with him for the first few days after his diagnosis.
Lee decided to take a medical leave of absence for the remainder of the year, hoping to return in the fall of 2013. After his diagnosis, he spent the next two months in the hospital receiving treatment and was subsequently in and out for follow-ups and help with symptoms.
As disappointed as he was to leave campus, Lee came back to Brown this fall with renewed purpose in his studies, he said. “I sort of had a year to figure out what I wanted to do,” he said, adding that he is now taking advantage of first-year seminars and has decided he will study Business, Entrepreneurship and Organizations.
A leave of absence can be just what a student needs when diagnosed with a serious illness, said Maria Suarez, associate dean and director of student support services in the Office of Student Life. Students are usually referred to the OSL by a parent, a private physician or Health Services. Though many students do not want to skip semesters, they usually report that it was valuable time away from Brown, she said.
“What students don’t realize … is that being discharged from the hospital doesn’t necessarily mean you’re ready to come back to the rigors of Brown academics,” she said.
Students who opt to stay on campus after being diagnosed with a major illness have the option to take on a reduced workload by enrolling in one to three classes. Deciding the best way to cope with a diagnosis academically involves an individualized discussion between students, parents, doctors and the administration.
A patient student
“Everyone around you is focused on grades or relationships or normal things, while you’re focused on your next treatment or doctor’s appointment,” said Sarah Pierce ’16.
In October of her first year, Pierce noticed that her lymph nodes were swollen — a routine case of mononucleosis, she thought. When she went to Health Services for treatment, a chest X-ray revealed a much more severe ailment. After she was taken to the hospital, diagnostic tests revealed that she had Hodgkin’s Lymphoma.
Diagnosis with a serious illness generally requires specialized medical care, leaving students no option but to travel to specific hospitals, said Edward Wheeler, director of Health Services. Health Services primarily aims to connect students battling serious illness on campus with specialist medical professionals in the community, he said, adding that the office can offer routine tests and administer some medications but lacks most of the sophisticated technology required by these students.
“We try to ease the difficulty of staying in school while you’re dealing with a major illness,” Wheeler said.
Most of Pierce’s chemotherapy occurred at Hasbro Children’s Hospital, where she received four three-week cycles of high-dose cocktail drugs targeted to eliminate cancerous cells. When diagnostic scans showed that she still tested positive for lymphoma in February 2013, Pierce was forced to decide between continuing chemotherapy and radiation or opting for a bone marrow transplant, which leaves the patient permanently infertile. She ultimately decided to undergo four more cycles of chemotherapy followed by three weeks of radiation.
Pierce endured short interruptions to her schedule to go to Miriam Hospital each week for treatment, but said the schedule was convenient overall. Still, she began to notice distinctive differences between her own life and her peers’.
She felt like she was living in two separate bubbles — one on College Hill and another at the hospital. It was difficult to reconcile the differences between her two lives, but she said each sphere lent itself to the other in unexpected ways. Her rigorous treatments instilled a powerful work ethic in her studies. Academics provided a much-needed distraction from chemotherapy and radiation, so at times she lost herself in her schoolwork.
Pierce and Lee both remarked that their exposure to suffering patients in the hospital was one of the most meaningful experiences of their treatment processes.
“Brown is a bubble. People here think they have problems,” Lee said. “You don’t know problems until you see people at the clinic.”
Struggling to stay awake, Jordan Brint ’16 couldn’t see the page fading in front of her eyes. It was nearly impossible to finish homework when both her vision and her physical stamina were unreliable. Her memory had been spotty, too, and she felt drained, drowsy, depleted of energy.
Brint, who was diagnosed with multiple sclerosis and hydrocephalus in the fall of her sophomore year, said her diseases placed a practical roadblock in her path to achieving academic excellence. Because her symptoms can be so unpredictable, Brint takes advantage of the days when she is feeling healthy by completing homework weeks in advance, she said. On any given day, she could be struck with bouts of fatigue, headaches, dizziness, blurry vision and pain in her hands, feet and legs. Much of the time, Student Employment and Accessibility Services aided her by granting extra time on exams and excusing her absences from classes, Brint said.
As part of the OSL, SEAS provides the majority of on-campus logistical support for students, said Catherine Axe, director of SEAS. The office offers services, such as a transportation shuttle and note-taking in class, to work with students on a case-by-case basis to help buffer their illnesses’ impact on their campus experience.
SEAS can also talk to course instructors so students do not have to repeatedly explain their situations when they need to miss class or require extended time for exams, Axe said.
For faculty members, accommodating a student becomes much more difficult when the illness requires the student to miss more than a couple weeks of class, said Elena Festa, professor of cognitive, linguistic and psychological sciences.
“I post all of my slides, they have friends who they can get notes from, but it’s not the same thing as being in class,” she said.
Though she expressed gratitude for the help provided by the University, Pierce did not feel like she was fully informed about campus resources for students with illnesses. She was not aware of the daytime shuttle to the hospital or that she could use EMS transport for free under her insurance plan. Her research mentor originally provided her with taxi vouchers to help with transportation to appointments.
Through all the accommodations that professors and SEAS provided for her success, Brint expressed a desire to be treated like a normal 20-year-old. “I don’t want to be a pity case to a professor.”
Many students see college as the prime of their lives, so diagnosis with a serious illness can throw a wrench into the perception of a normal student experience, Wheeler said. “When you’re in college, you’re looking for an identity,” he added. “Then you throw this at them, and suddenly you’re not just a college student who likes economics, you’re a college student with leukemia.”
‘Peace, calm, love’
“People feel fairly invincible, and they don’t think about their mortality,” said Monica Kunkel, nursing coordinator at Health Services. College students have much of their lives ahead of them, she added, which makes it difficult for these students to live in the present and deal with their illnesses.
It is easy to not realize that mental health risks can also stem from battles with major illnesses, said Sherri Nelson, director of Psychological Services. Many people undergo periods of depression and anxiety during the time of diagnosis and treatment, she added. To combat this trend, Psych Services offers two relevant support groups for students with serious illnesses.
One group aims to support students with chronic medical conditions by providing a forum for discussion of social, academic and health problems.
“You don’t really know there’s someone else out there who’s dealing with what you’re dealing with until you come to the group,” said Mark Rubinstein, a psychotherapist at Psych Services and the leader of the group. He added that living with a serious illness presents certain challenges to which most people cannot relate, such as painful symptoms, stigmatization and potential derailment of post-graduation plans.
“You might think it’s very dreary, but they’re actually very talkative and positive,” he said of the meeting’s attendees, usually five to six students.
A second support group, Back at Brown, holds weekly meetings to provide peer and professional aid to students returning to campus after medical leave.
Lee and his family have tried to maintain a positive attitude — the best kind of support possible — throughout the diagnosis and treatment process, Ling wrote.
Solace from chemo and radiation came partially in the form of an online journal of his experiences after his cancer diagnosis, Lee said. It was his outlet for the wide range of emotions he felt day to day in the hospital. Often capping entries with “Peace, calm, love,” Lee attempted to approach his treatment with resilience and grace.
Running 12 half-marathons in 12 months seems like a terrifying prospect to most people, but Pierce is doing just that after her bout with lymphoma. She received her six-month-clear scans in January and has already completed two races since then, raising money for cancer research during each race.
Because of his fight with cancer, Lee wants to help other people for the rest of his life, he said. He has realized that rather than fretting over small things in life, he should appreciate the things he does have and how lucky he is to afford all necessary treatments.
Kalie Boyne ’16, a close friend of Lee, said his friendliness and generosity are nothing new. In their “jam sessions” in their first-year residence hall, Lee always encouraged anyone who wanted to sing, even though everyone knew he had the best voice in the group, she said.
Over spring break, Brint underwent brain surgery in which doctors placed a small passage called a shunt in her brain to divert spinal fluid from her brain to her abdomen through an inserted tube. The surgery is intended to relieve fluid pressure in the brain and relieves some of the symptoms of hydrocephalus.
With a dark line snaking down her neck from the inserted tube, Brint still feels the painful aftereffects of the procedure, she said. The buzzing headache and extreme fatigue will persist for a couple more weeks while she recovers.
The effect that multiple sclerosis could have on the rest of her life remains to be seen, as she could remain relatively able or end up relying on a wheelchair.
Brint is planning to spend the year after graduation traveling. She says she wants to go everywhere.