Sunday, October 12th, 2008

Living in Remission

Students survive cancer to continue education

Months of treatment and uncertainty surrounding their disease has enabled some students to find greater value in their education and their lives.

By Mary Sorrick (Contact)

Thursday, May 8th, 2008

Jessica Roark sat in the ophthalmologist’s office, waiting for the results of a biopsy of the inflammation under her right eyelid. The eyelid had been swelling for weeks but nothing doctors prescribed seemed to help.

She hoped he would prescribe another round of steroid treatments to make the puffiness go away. Instead, he delivered news that sent her reeling.

Jessica had cancer.

In that moment, numbly absorbing her diagnosis, Jessica couldn’t see the months of chemotherapy, hair loss and nausea. She didn’t know she would spend more time researching cancer than studying for classes. She didn’t know she would lose her eye.

Jessica is among a small number of KU cancer survivors, a group that includes Tracie Revis and Erica Red Corn. For them, being diagnosed with cancer marked the beginning of surgeries, radiation and chemotherapy – literally fighting to stay alive at an age when they should be launching careers and starting their adult lives.

Jessica adjusted to the loss of her eye and overcame anxiety about her cancer to work toward degrees in civil engineering and environmental studies. Tracie survived the removal of a tumor the size of a grapefruit and the recurrence of her cancer to study at KU law school. Erica endured the spread of cancer from her knee to her lungs to enter medical school with the belief that the experience would make her a better doctor. Each survivor faced her own set of challenges, but they are all linked by one certainty: For cancer there is no cure, there is only remission.

Although there are no statistics describing the prevalence of cancer among college students, about 70,000 people ages 15 to 39 are diagnosed with cancer each year, according to the Livestrong Young Adult Alliance. Despite improved survival rates for every other age group, cancer survival rates for young adults have not increased in more than 30 years. For college students in this demographic, the treatments can take an especially heavy toll.

Jennifer Klemp, managing director of the breast cancer survivorship center at the University of Kansas Medical Center, said short-term side effects of chemotherapy and radiation included not only hair loss, but also fatigue, depression and decreased cognitive function – a snag for any patient pulling double-duty as a college student.

In the long term, Klemp said cancer treatments could cause a weakened immune system, susceptibility to infections such as pneumonia, early bone loss and the increased likelihood of secondary cancers wherever radiation was focused on the body.

Robert Twillman, program director of pain management at the KU Medical Center, said the loss of control felt by young patients during treatment could be as difficult to manage as the physical side effects.

“That air of invincibility that young people have – the sense that they are bulletproof – gets blown out of the water when they have cancer,” Twillman said. “That’s something that’s not supposed to happen until later in life and it can be tough.”

While hair loss and surgical scars can affect a young person’s body image, Twillman said infertility and practical concerns about insurance and future employment forced student patients to grow up fast.

For all the pain and frustration they endure, Twillman said young cancer survivors had an uncanny resilience in bouncing back.

Jessica Roark

Before her diagnosis in October of 2006, Jessica hadn’t worried much about cancer or even heard about adenoid cystic carcinoma, a cancer so rare that only about 3,300 people get it each year in the United States.

But the world of cancer was about to get a lot more familiar.

Doctors’ appointments and treatment plans became the focus of Jessica’s daily life. After class, she alternated between coursework and online cancer study sessions.

“There are so many different types and treatments you have to go through,” Jessica said. “And how it affects you personally – there’s this whole part of life I had absolutely no idea about and I wasn’t prepared for it.”

In January, Jessica underwent four days of in-patient chemotherapy at the University of Iowa’s Holden Comprehensive Cancer Center to shrink the tumor in her tear duct.

First, she received intra-arterial chemotherapy – her first ever surgical procedure. Strapped to an operating table, Jessica lay still while she received chemotherapy drugs in her eye from a catheter that doctors inserted into the artery near her hip, threaded up through her heart, into her neck, and fed into her ocular veins.

She then underwent three more bouts of chemotherapy in the following three days, this time through an IV in her arm.

Within two weeks, her hair fell out.

“I had buzzed my hair before, and when I did it voluntarily, it was different,” she said. “You think about gender definitions a lot without your hair. I just didn’t feel very feminine.”

On campus, she donned a short black wig to avoid strangers’ stares. While she kept her mind busy by focusing on classes, her father, John Roark, struggled with the reality of what was happening to his daughter.

“You wish you could take the pain away and the hurt away, but you can’t,” he said. “It’s a feeling of helplessness. It’s pretty scary.”

That helplessness only increased after doctors told Jessica in February that they wouldn’t be able to remove the tumor in her tear duct without also removing her eye.

“It was the most difficult thing for me to do. But what else are you going to do?” she said. “It’s either lose your eye, or you die. So I lost my eye.”

The 13-hour surgery took place during spring break, when doctors replaced her eye with muscle and fatty tissue from her wrist. Determined to finish the semester, Jessica returned to classes the next week wearing an eye patch, which some mistook for a fashion statement.

“If I were in Budig walking through a whole bunch of people, I’d get an ‘argh,’ or people would give me a thumbs up to tell me they really liked the eye patch,” she said. “People didn’t know whether to take it seriously or not.”

She continued to wear the eye patch through the summer, which she spent in Iowa receiving radiation treatments.

Five days a week for seven weeks, she received radiation for 30 minutes in the morning. She spent her free time in parks, walking along hiking trails and reflecting on her past few months.

“While I was going through treatment, my entire life was consumed by cancer,” she said. “I don’t want it to define me, but it’s not as possible when it’s your face. Other people have had other types of cancers and they can at least forget about it a little bit. But I get reminded by strangers. I know I don’t look really awful or anything, but it does a once-over on your self esteem.”

Part of Jessica’s support system while adjusting to life after surgery was her boyfriend of 10 months, Nick Perry, who lost an eye in a lawn mower accident when he was a boy.

When they met in a support group, Nick was one of the few people Jessica could relate to about her experience.

Now seven months out from her last treatment, Nick said the experience made Jessica a lot less fragile than she had been before.

“She has grown some armor, I guess you could say,” he said.

Part of that armor includes coming to terms with her long-term prognosis, which Jessica sees as fairly bleak. Though her doctors are confident in their treatment methods, Jessica said adenoid cystic carcinoma recurrence rates were about 50/50. If the cancer does spread, there won’t be much else the doctors can do.

Despite lingering fears, Jessica decided she wouldn’t let the cancer stop her from doing anything. That attitude left her father, John Roark, with a sense of optimism.

“She relishes every moment, and with good cause,” he said. “It’s amazing to see the courage in your own child. It surprises you that there’s that much there.”

After a year and a half of chemotherapy, radiation and surgery, Jessica is on track to graduate in 2010 with two degrees—one in civil engineering and the other in environmental studies.

“Sometimes I think about what happens if I die, but you can’t think like that,” she said. “You have to live your life however you want to live it. You can’t plan for a car accident tomorrow, but you’re going to get in your car anyway.”

Tracie Revis

Tracie Revis felt sick for much of the year before her first day at the KU School of Law in August of 2005.

The persistent cough, night sweats and swollen nodes in her neck got worse once school started. By October, symptoms had accelerated to the point where she hardly had the energy to stay awake.

In November, X-rays showed a large mass, 5 by 6 inches, in her chest. Doctors made the decision to crack open Tracie’s chest and remove the mass, a procedure that rendered her completely helpless, held together by four wires strung through her chest.

“I lost all my freedom,” she said. “I went from being completely healthy to not being able to push myself up. I couldn’t tie my shoes. I couldn’t do anything.”

Three weeks before finishing her first semester at law school, Tracie had to drop out.

She didn’t have health insurance and Indian Health Services, a federally funded program for American Indians, was her lone source of money for medical bills. Approval for treatments was anything but fast, she said.

She got the call on Christmas Day, 2005 that she had Hodgkin’s Lymphoma, and had to wait until March to begin chemotherapy. Doctors told her that Hodgkin’s was a relatively treatable cancer, but by the time she began treatment, the tumor in her chest had tripled in size.

Tracie underwent chemotherapy in Oklahoma. After her last treatment in July, doctors released her from the hospital. Her hair had just started to grow back when, in November 2006, X-rays revealed that the cancer had come back with a vengeance.

Three new tumors had developed on the left side of her chest. She started chemotherapy again in January of 2007, helpless against the blurred vision, numbness in her legs, feet and hands, and muscle spasms in her stomach and back that often resulted from the drugs.

“One of the lessons I had to learn was I’m a control freak,” Tracie said. “I tried to get well when I wanted to get well. But you lose control of everything.”

Even now, the smell of the hospital is etched in her memory.

“I could smell everything,” she said. “Smelling chemo, smelling drugs. It just makes you sick.”

In May, doctors performed a stem cell transplant on Tracie. They harvested some of her stem cells then bombarded her with two rounds of ultra-high dose chemotherapy. The treatment, designed to kill any remaining cancer cells in her body, also obliterated her immune system. Only after doctors replaced her healthy stem cells could her immune system rebuild itself. For a month she was confined to the sterile halls of the hospital’s chemotherapy ward. Her only freedom was pacing up and down the halls with her IV drip in tow.

Joe Revis, Tracie’s younger brother, said the loss of freedom was one of the most difficult things for her to deal with.

“She had a window in her room and could see out into the world, and yet the longest distance she could travel was up and down the hallway,” he said. “That is a really scary thing.”

Tracie relied on laughter to cope with her confinement. When Joe visited her in the hospital, they played video games or entertained each other by fashioning mannequins from inflated latex gloves and extra clothing in the hospital.

Heather Shotton, one of her closest friends, said Tracie’s sense of humor helped get her friends and family through the treatment as well.

“She always found ways to laugh and have fun,” Heather said. “I think she really understood the importance of laughter.”

Doctors released Tracie from the hospital in June. For the rest of the summer, she spent every weekend at stomp dances with her Yuchi tribe in Oklahoma, reveling in the opportunity to be outdoors and breathe fresh air – replacing the negative smells from chemotherapy with the smoky smell of campfires and the chirps of locusts.

Tracie was readmitted to KU Law and headed back to Lawrence in August to work toward her degree.

She was determined not to let cancer stop her again and spent the first six weeks of the semester finishing the last of her radiation treatments before class each morning.

Her friend, Heather, said the experience fueled Tracie’s passion to be an advocate for others.

“More than anything, it changed her perspective and outlook,” Heather said. “Good grief, you talk about tenacity. I’m always amazed at her.”

But life after treatment is not the same as before. Last fall, as a result of her cancer treatment, Tracie began early menopause at the age of 30. She also gets sick and rundown more easily than others her age.

“I’ll never be a normal law student,” she said. “I can’t push as hard as everyone else. In my head I’m 10 feet tall and healthy, but it’s just not so.”

Tracie will spend this summer in Washington, D.C., interning for U.S. Rep. Raúl M. Grijalva, D-Ariz. Her experience battling cancer strengthened her resolve and determination to use her law degree to improve Indian health care and the lives of Native American children.

“When I was going through the cancer, I didn’t know how to fight it and I didn’t have a voice,” she said. “Now I live my life like I remember what I’m fighting for.”

Erica Red Corn

Erica had already endured chemotherapy, radiation and bone transplant surgery before entering the University as a freshman in 2001.

At 15, she was diagnosed with Ewing’s Sarcoma, a rare cancer that primarily afflicts teenagers, and spent her entire sophomore year of high school in outpatient chemotherapy to shrink the tumor that had developed in her left knee. The summer before her junior year, doctors removed the tumor and replaced the bottom 4 inches of her femur with donor bone, a procedure that caused nerve damage and left her with a permanent limp.

She got through treatment with support from her family and boyfriend, now husband, Alex Red Corn, and started at the University, anxious to escape the “cancer girl” label that followed her through high school. That fresh start was cut short two months into her first semester when doctors told Erica the cancer had spread to her lungs.

Erica’s mom, Amy Ubben, said the second diagnosis was even more difficult than the first.

“As a parent, you feel like your main job is to protect your child from harm,” she said. “You get into that situation and realize you’re helpless. I remember just feeling like the bottom had fallen out of my world.”

Having already gone through treatment once, Erica knew what was coming. She started chemotherapy right away, but convinced her doctors to let her stay in school until after finals.

“I wanted to finish the semester because, in the back of my mind, I thought this could be my last chance to go to college,” she said.

In December, Erica left school to get inpatient chemotherapy through May. A stem cell transplant in May and another round of chemotherapy followed.

Though the hair loss, nausea and fatigue were easier to deal with the second time around, she knew the relapse reduced her chances of survival.

“Just the thought that there might not be anything left to do could start up these panic attack feelings,” she said. “I wasn’t ready to go. I didn’t feel like I was 95 and had led this long life and could be at peace with it.”

Now, six years after her last treatment, her experience has served her well as a student at the KU School of Medicine. She said her own experience in hospitals would make her a more sympathetic doctor and a better listener.

Alex, whom Erica married in 2006, said the experience brought them closer together.

However, many of the lasting effects of her treatment have been difficult to shake.

“It’s over to a lot of people, but for Erica, a lot of it will never be over,” Alex said.

Because of her weakened immune system, Erica has had pneumonia four times. Now, any symptom of illness and it’s back to the doctor’s office.

“It’s pretty miserable because, obviously, school doesn’t stop just because I’m having tests done,” she said. “It’s just little stuff like that that’s always popping up.”

Most days she does fine with her limp and the brace she’s had to wear since her surgery 10 years ago. But having to wear tennis shoes on her wedding day was another reminder of the grip that cancer still has on other parts of her life.

Erica also has a high risk of developing secondary cancer because of the duration of her chemotherapy and radiation treatments.

“People say I should just be optimistic and think nothing bad will happen. But my personality doesn’t jive with that and I feel like I just don’t have that luxury anymore,” she said. “I just always assume I’m going to get cancer again.”

Though she has reconciled herself with most of the long-term effects of her treatment, she continues to struggle with ovarian failure and infertility caused by months of chemotherapy.

“Doctors appointments, getting sick, not being able to wear the shoes I want to wear – those are the things you get over,” she said. “But not being able to have kids is the one thing that I feel truly robbed of.”

She and Alex started the adoption process in the fall. In the meantime, Erica is focused on medical school. It can be difficult, she said, because she’s almost always tired and often struggles with her long-term memory. At times, she wonders if she can chalk it up to the cancer.

“Sometimes I think life would be easier if I didn’t have to go through that, but you can’t discount an entire experience like that,” she said. “I did learn a lot from it and I honestly feel like I’m a better person because of it. I have had a lot of life in my 25 years.”

Though Erica and other young cancer survivors seek to put their cancer behind them, they still struggle with the knowledge that it could return at any time. The question lingering in the back of their minds is when.

— Edited by Elizabeth Cattell

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