They found the cancer in Colleen Duffey’s liver 18 months ago, shortly after the birth of her second daughter. What they discovered next was even more chilling: It wasn’t liver cancer at all; it was breast cancer that had already spread.
And just like that, a 32-year-old mother of two small children suddenly became a late-stage cancer patient.
When the disease metastasized to Duffey’s brain last November, her oncologist at Duke University in North Carolina referred her to a Los Angeles-based company called Reimagine. It’s a kind of online Cancer U that offers a nine-part virtual course to teach cancer victims and their loved ones skills for coping with the social, emotional and spiritual challenges that the illness poses.
The doctor told her that the course, known as Pillars4Life, was a clinically proven method that had helped many of her other patients. So Duffey signed up, and she just completed the course last month.
“Cancer is such a mind thing. You can’t ignore the worry and anxiety and stress, and that class helped me deal with that side of it,” says Duffey, who lives with her family in Alexandria, Va., and works as a systems engineer – part-time now – at Lockheed Martin.
“They teach you how to refocus and redirect your thoughts. They teach you how to reframe things so they are more positive. If you are having a bad day and you’re having bad thoughts, it helps you get out of the funk.”
Reimagine is the brainchild of Kristin MacDermott, a licensed marriage and family counselor, and Tina Staley, a clinical social worker who has worked extensively with end-of-life patients.
The two met 12 years ago in Aspen, Colo., and later worked together with cancer patients at Aspen Valley Hospital. The idea behind Reimagine grew out of their partnership there.
“We believe we complement medical care and really help people restore their person, their sense of wholeness,” MacDermott said. “We are all about making people feel better in the midst of all this chaos and disruption that cancer causes.”
In addition to the Pillars course, Reimagine connects its clients to each other in an online chat room similar to Facebook, allowing them to stay in touch long after the class is over. It also makes experts available to them on subjects such as nutrition and fitness, and publishes a magazine about living with cancer.
The company, headquartered in the mid-Wilshire district of Los Angeles, sells the whole package for a one-time fee of $399, which confers lifetime access to all of those materials.
For an extra $100, the patient’s caregiver of choice – a spouse, sibling, child or friend – can also become a lifetime Reimagine member. The company is planning to offer a series of advanced courses for an additional fee.
Since Reimagine started offering its course in mid-2011, about 2,000 people have taken it. In addition to individuals, the company’s customers include a number of hospitals and nonprofit organizations, including the National Institutes of Health.
Twenty hospitals across the country offer the Reimagine course to their patients free of charge,thanks to a grant from the Austin, Texas-based Livestrong Foundation, whose stated mission is to help people with the everyday challenges of living with cancer.
There are numerous support groups, counseling centers and other resources for cancer patients out there – many of them free, or integrated into comprehensive cancer-treatment plans that are covered by health insurance. The Reimagine program is not covered by health insurance plans so far, but most of the people who have signed up for it have received grants from Livestrong and other organizations. Counselors, social workers and oncologists who work with cancer victims say that no amount of support can ever be enough for patients and their families – and Reimagine is no exception.
“I absolutely think it could be needed and useful,” says Caitlin Glenn, the lead social worker at the cancer center at Hoag Memorial Presbyterian Hospital in Newport Beach. “A lot of survivors don’t feel up to coming into the hospital for a support group if they are not feeling well. And this could be a great option to connect with other survivors as well as to get other resources they may not otherwise be able to. Or maybe they are living too far from a cancer center.”
Unlike most support groups and other psycho-social cancer resources, Reimagine’s curriculum has actually been investigated in two clinical trials at Duke University and 17 other medical centers around the country.
In the first trial, conducted on 50 women with metastatic breast cancer, patients showed “significant improvement” in symptoms of distress and despair, as well as on overall enhancement in their quality of life, says Amy Abernethy, a professor of medicine at Duke who played a pivotal role in conducting the studies.
The second study, which involved 130 patients with a range of cancer diagnoses and prognoses, showed similar results, Abernethy said. She mused that one of the key reasons for doing the second trial was that Duke physicians involved in the first study “started lamenting” the fact that it was winding down.
“The second study was a way for our physicians to continue getting access to the program for their patients,” she said.
Cindy Finch, one of the facilitators who lead Reimagine’s course, discovered its benefit to patients long after her own bout with cancer. She was diagnosed with non-Hodgkin lymphoma at the age of 31, when she was pregnant with her third child. Chemotherapy and radiation right after the pregnancy took out her cancer, but the ravages of those treatments came back to haunt her several years later when she suffered multiple organ failure that required open-heart and lung surgeries in quick succession.
A few months ago, years after her recovery, Finch took the Pillars course as part of her training to work for Reimagine. It brought back “all the hurt and stress and anxiety” of years earlier, “and I was able to go back and work through all that,” she says.
“I was skeptical about them when I first came into contact,” Finch recalled. “I didn’t think they should just be glossy or trite or shallow – and they weren’t. You have to be on the hot pavement of real life with people, because people are really suffering.”
Finch’s husband, Darin, a Garden Grove native who graduated from Pacifica High School 30 years ago, also took the course. He says it helped him find a vocabulary and retroactive validation for feelings he’d had as a caregiver for Cindy.
“I felt guilty about feeling I needed time for myself,” he says. “Now I am reminded how the airlines ask you to put your oxygen mask on first before you can help others.”
The patients and caregivers who log into the online course can reveal as little or as much of themselves as they wish. They don’t have to give their real names or show their faces via webcam if they don’t want to. People are not asked to talk about their specific diagnoses, because the course is all about the broader themes of coping with the trauma, the social awkwardness, the emotional, financial and spiritual uncertainty that cancer induces.
MacDermott says the option of remaining anonymous, the highly structured curriculum and its portability are all strong selling points of the Reimagine program. Even cancer therapists who prefer to see their patients in person acknowledge that this approach can work well for certain people.
“I can express my bias and say there is strong support when you have actual human touch in a room with several individuals or one-on-one. But I can’t ignore that some of the younger generation or even the older generation may be very private and may prefer to remain anonymous,” says Rose Marie Danieri, a medical social worker who helps treat cancer patients at Kaiser Permanente medical centers in Irvine and Anaheim. “And if it works for them in this fashion, and they are comfortable, I support it.”
View the original Orange County Register articlehere.
