Desiree Jones-Eaves took the elevator to the radiation oncology department in the basement of Boston Medical Center (BMC) and changed into a hospital gown to await her chemotherapy treatment. After the session, she put on her wig, penciled in her eyebrows, and rushed back to the ninth floor to tend to her patients. “People would tell me, ‘You’re doing such a good job’” [balancing the demands of a challenging career with the stress of chemotherapy], says Jones-Eaves (CGS’82, SON’85), a nurse at BMC, “but they had no idea.”
Throughout 6 weeks of 33 treatments, Jones-Eaves struggled with fatigue, memory loss, and the multitasking demands of her job. Those cognitive difficulties didn’t go away when her treatment ended. After months of doctor’s appointments, chemotherapy, and constant stress, cancer survivors like Jones-Eaves often face continuing challenges that make it hard to get back to their daily lives.
A new program to support breast cancer survivors after treatment can help. Robin Newman, a Sargent clinical assistant professor of occupational therapy, developed the six-week intervention. Hosted at BMC, the program is designed for women who have been in remission for 6 to 24 months and who are experiencing cancer-associated cognitive impairment, such as memory loss or trouble focusing.
“Breast cancer patients have needs, not just during diagnosis and treatment, but beyond,” says Naomi Ko, an oncology physician at BMC and a BU School of Medicine assistant professor. Ko describes Newman’s program as a “great way to take care of all aspects of the person; not just their disease, but their lives.”
“Breast cancer patients have needs, not just during diagnosis and treatment, but beyond.”
The first week includes a private appointment with Newman at which the women discuss challenges and goals, followed by four weeks of group sessions and a final one-on-one evaluation to review outcomes.
The weekly sessions focus on the participants’ goals for self-care, work, and leisure and are moderated by Newman, who is an occupational therapist and a certified lymphedema therapist. The women help each other generate strategies to feel more in control of difficult situations. Jones-Eaves addressed her memory loss by developing a system for taking notes, for example, and centered herself by taking brief rest breaks. The group became a safe space for the women to share the difficulties they faced from week to week, from the serious (workplace meltdowns) to the mundane (piles of laundry).
The program also helped the women feel less alone as they came to understand their challenges as part of the recovery process, instead of as a personal failing. When Jones-Eaves shared her concerns about her low energy level with the other three women in her group, “I realized I wasn’t just being lazy,” she says.
Susie, another group member, is a self-described morning person who used to finish her errands and housework by noon on Saturday. After her diagnosis, however, she couldn’t maintain that pace, and the group has helped her learn acceptance. “Your priorities change,” she says.
The women in Newman’s group had not previously worked with an occupational therapist as part of their breast cancer recovery, and they considered the experience eye-opening. “I wish everyone could have a session to discuss what to expect” after treatment, Jones-Eaves says. “It gave us tools to continue to work on what we needed.”
“It’s our responsibility to listen deeply to what the patient’s daily life challenges are and provide treatments that meet those needs.”
Dima Thabit (’16,’18), who lost her grandmother to breast cancer, volunteered with two cohorts of women while earning a master’s in OT, observing group and private sessions. The work offered an experience “you can’t learn in a classroom, where you can’t see that dynamic unfold,” says Thabit of the group intervention. “I learned the importance of understanding the population you’re working with and their needs.”
The women also gave Newman insight into her practice. “I ask better, deeper questions when I work with people,” she says. “If someone tells me they’re fine, I probe a bit more. I try to instill in students that it’s our responsibility to listen deeply to what the patient’s daily life challenges are and provide treatments that meet those needs.”
Newman believes OT intervention should be standard care for breast cancer survivors, and her initial research groups, though small, have shown positive results. Since 2016, three cohorts have completed the program, and the majority of the women have reported greater satisfaction with their ability to participate in work, self-care, leisure, and social activities, which they were also able to undertake with more ease. They reported better functional well-being and were less frustrated by the impact of their cognitive impairments on their daily lives. Their participation in familiar and new activities also increased.
“There’s power in doing things that are meaningful to you,” says Thabit. “There’s a therapeutic aspect to it.”
Jones-Eaves acknowledges her own attitude shift. “Now, instead of feeling bad and embarrassed,” she says of her memory lapses, “I just let it go. The program taught me to sit still and not feel guilty.” After spending her career taking care of others, she’s learned the importance of looking after herself.
The program’s pilot year was part of a feasibility study funded through a grant from the Boston University Clinical & Translational Science Institute. A Dudley Allen Sargent grant will fund Newman’s 2017-2018 programs.
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