Researcher Becomes A Cancer Patient, And Learns About Hope
Abby Prestin, seen here with her husband, studied medias influence on healing, then applied her findings to herself when she got sick. Illustrates HEALTH-RESEARCHER (category l), by Jennifer Miller, special to The Washington Post. Moved Tuesday, April 01, 2014. (MUST CREDIT: Courtesy of Abby Prestin.)
Last September, Abby Prestin received a CT scan that showed a large tumor pushing against her windpipe. “It was just hanging out with my heart and lungs,” she said. “That’s the day I knew I was sick with something more significant than allergies.” Prestin, a fit 33-year-old, had been fighting a nasty cough since the spring. It wasn’t until August, though, when she started to lose weight, feel short of breath and lag under a persistent fever, that she went to the hospital.
The diagnosis was terrible, but competing with Prestin’s fear was a strong sense of irony. Only three days before she learned of the tumor, a study based on her doctoral work had been published in the journal Media Psychology. Its topic: how movies and TV can generate hope and motivation in viewers who face daunting and emotionally draining challenges such as cancer.
“I worried about how I chose a career working on research that helps prevent or control cancer and then I got it myself,” she said. “That was, in a weird way, kind of embarrassing.”
But rather than sitting around thinking of the irony of her life, she has chosen to turn herself into the subject of her newest study. She is investigating which media can help a young social scientist cope with a diagnosis of large B-cell non-Hodgkin lymphoma, which typically hits people much older than her and has a 10-year survival rate of 71 percent for low-risk patients like Prestin, according to the American Cancer Society.
“I’ve always felt hopeful about the diagnosis,” Prestin said, “but when I need to be picked up, I turn to media. Movies and books take me out of my reality.”
Life as a cancer patient turned Prestin into a more astute researcher, she said. Her experiences in hospitals suggested new applications for her research and revealed some unanswered questions in her previous analysis, such as whether helping patients feel hopeful about their long-term prospects can help them conquer stress and fear on a daily basis.
Her background in social science research became a kind of coping mechanism. When she felt afraid of hearing negative test results or undergoing procedures, for instance, she would use her academic knowledge and training to not let her emotions overwhelm her.
Studies have shown that while having a positive attitude cannot on its own fight serious biological illness, being upbeat is associated with resistance to the common cold and with fewer self-reported symptoms of pain. A meta-analysis by researchers at the University of California at Riverside suggested that “positive psychology interventions” — such as having a patient focus on positive past experiences or practice mindfulness meditation — can reduce depressive symptoms.
The research Prestin had published in Media Psychology had found some positive effects. It used 248 individuals and split them into four test groups. The first watched “underdog narratives” — fictional and true stories about people and animals facing significant challenges. Among them was a news story about a disabled dog that relearned how to walk and a pep talk by a coach in the 1999 football film Any Given Sunday. The second group watched clips from popular TV and movie comedies such as Two and a Half Men and The Hangover. The third group watched nature shows. The fourth group, which was the control, watched nothing. All participants (except for those in the control group) watched their specific genre five minutes a day for five consecutive days. Then they answered a series of questions about their emotional state.
Prestin found that participants who watched the underdog narratives were both more hopeful about the future and newly motivated to overcome personal challenges. While feelings of amusement and calm can raise a person’s spirits, “they don’t make you feel like you want to go out and change the world,” Prestin said.
Prestin also discovered that, unlike emotions such as calmness and happiness, hope lasted. “Even up to three days later, the underdog group felt more hopeful,” she said.
And the people who watched the underdog stories didn’t need to see the underdogs succeed in order to feel inspired. For instance, the Any Given Sunday clip featured no footage of the team actually winning. Still, people reported feeling motivated to accomplish goals and overcome personal challenges. “It was the process of coping that made people feel hopeful,” Prestin said.
Media and Stress
Here’s another irony: After completing her Ph.D. at the University of California at Santa Barbara, Prestin moved to Bethesda, Md.,where she worked in the behavioral research program at the National Cancer Institute, studying the relationship between positive media messages and cancer-related stress. Last May, she took a job at the Food and Drug Administration to help implement and support tobacco regulation. She wanted to help people improve their odds of avoiding cancer.
“In academia, the research just stays there,” she said. “I wanted to bring research to people directly.” Prestin was happy with the move because the FDA job still involved the study of media messages and cancer prevention.
Her diagnosis came five months later.
Prestin the research subject has given Prestin the researcher plenty of material to work with since then. Her doctors said that drugs should be able to eradicate her tumor, so they put her on a six-month chemo regimen. For the first few months, she and her husband traveled to the Yale Cancer Center, where her stepmother used to be an ER nurse, so that Prestin could have her infusions close to family.
She lost her hair and felt achy from a drug that makes her chemo-affected bone marrow pump up production of white blood cells, and she often experienced extreme fatigue. At times, Prestin was so weak that she couldn’t lift a fork to her mouth. She also experienced a mental fuzziness often called “chemo brain.”
Having never been a very sick patient before, she said this “challenged a lot of my assumptions. How you test questions based on academic knowledge is different than how you test questions based on real life.”
For example, it initially didn’t occur to Prestin to put herself on the same underdog regimen that she had created for her study. She was too busy with all the medical tests and chemo and trying to stay on top of her FDA work. But she quickly realized that televisions in hospital waiting rooms were problematic. “They played these horrible talk shows in the waiting rooms,” she said.
Prestin realized that it wasn’t good enough to simply give stressed-out patients random daily doses of uplifting media. There were certain situations in which media could help — or seriously hurt — a patient’s mental state.
“We have research that suggests that media can affect emotions,” she said. “When you’re getting chemo and you’re sitting around and watching TV, that’s an opportunity that should be pursued.”
At one point when Prestin began to panic during an echocardiogram, she made herself think about the motivational videos from her study, hoping that might help. But her dread persisted. Why, she wondered? And then she had a eureka moment: “The underdog scenario didn’t apply to me,” she said. “The emotion I needed was bravery.”
Unlike people inspired by underdogs, Prestin did not need a motivational push to begin tackling problems; she was already meeting them head-on, getting treatment and following her doctor’s orders to the letter. Instead, she wanted — needed even — to see people who displayed courage in dangerous situations. She wanted to see them triumph.
“I was thinking, ‘Is there media that shows people in the line of fire? Because that’s what I need,’ ” she said.
When she read novels during her chemo treatments, she found she “felt most satisfied in following a narrator through to a positive resolution.” It buoyed her. She gave up on one book when she realized there would be no happy ending.
Bravery narratives resonated with Prestin most of all when the protagonists felt isolated. “As much as family and friends love you and help you through cancer,” she said, “certain things you have to do alone. Those have been the scariest things for me. You need to pull that courage from somewhere.”
So she recalled the moment from Harry Potter and the Deathly Hallow in which Harry walks alone into the forbidden forest to confront Voldemort. She already knew there would be a happy ending, despite Harry’s belief that he would die. But focusing on Harry’s decision to “face an uncertain future” without the aid of his friends gave her courage.
Little research has been done about the relationship between bravery and health or about how media scenes depicting courage might help the seriously ill. But Robin Nabi, a professor of communication at Santa Barbara who was Prestin’s Ph.D. adviser, said there has been extensive, potentially relevant research into “modeling” — i.e., predicting how people will emulate behaviors and attitudes they see on TV. Most of these studies have focused on emulating negative aspects of violence and sex. But Nabi says that “models of courageous behavior could most certainly instill feelings of courage in audiences” that could help them cope.
Prestin would like to take on this research, though at present the task seems daunting. “On the days that I have energy, I’m very excited about these new ideas,” she said. But after her chemo infusions each month, she often feels as frail as a woman of 90. “When I have no energy, I think, ‘Oh, yeah, I’ll do those one day.’ ”
Still, Prestin continues to test her hypotheses on a sample of one and recognizes that this, in itself, is a powerful coping mechanism.
“It has helped me to understand what I’m going through in more of an objective manner,” she said, “and to know that how I think is affecting how I feel.”
Prestin completed her chemo in late January, but a CT scan in February showed the presence of masses in her chest. She is now enrolled in a clinical trial protocol at the National Institutes of Health. To battle her continued anxiety, she turned again to science. She returned to some unpublished research from her doctoral years in which she interviewed breast cancer survivors about how they use media to cope with stress.
She is coding the results and hopes to publish them. Not only does this work shift her focus away from her own worries, it has also given meaning to her recent trials. “I don’t want this experience to be ‘Oh you got sick and that’s that,’ ” she said. “If I can use my skills and experience for some benefit, that’s what I’d really like to do.”