Liz Gruber and Rus Lodi
Couples coping with cancer
It is early on a Tuesday morning at the Newton home of Liz Gruber and Rus Lodi, and the scene is one of frenetic activity.
As Rus prepares peanut butter sandwiches for a trio of school lunches, Liz dishes out eggs and grapefruit to the couple's young children. Four-year-old Rusty has boisterously brought his favorite action figures to the table, while 8-year-old Rachel is engaged in her latest sewing project. The calmest person in the room appears to be 10-year-old Hannah, who quietly arranges her previous night's homework amid the tumult.
This harried, happy episode is played out hundreds of times each year, yet it is unlikely that anyone in the family takes it for granted these days. In the months following her diagnosis with breast cancer just before her 43rd birthday last June, Liz Gruber was often too tired to participate in such daily rituals. She immediately started treatment through the Gillette Center for Women's Cancers following a mastectomy and reconstructive surgery at Brigham and Women's Hospital.
That ordeal, along with the chemotherapy and radiation treatments that followed, took their toll on each member of the close-knit household. Dealing with the fear and pain of the illness was difficult, and, as close as they were, Gruber and her husband often had trouble discussing it with each other or with their kids.
Lately, however, the conversations have become easier. During her chemotherapy and radiation, Gruber and Lodi took advantage of a new psychosocial study titled "Couples Coping with Breast Cancer," under way at both the Dana-Farber/Brigham and Women's Cancer Center (DFBWCC) and Massachusetts General Hospital (MGH) Gillette Centers. Developed by Karen Kayser, Ph.D., M.S.W., an associate professor in the Graduate School of Social Work at Boston College, the study is examining the effectiveness of psychosocial services for breast cancer patients and their partners by looking at 100 couples confronting the illness.
In order to be eligible, a woman must have been diagnosed with non-metastatic (non-spreading) breast cancer within the previous three months, and she must currently be receiving treatment such as chemotherapy, surgery, radiation, or a combination of treatments. Each candidate must also be married or in an intimate relationship.
Meeting these criteria, Gruber and Lodi decided to participate in the study and were randomly assigned to the "Partners in Coping Program," a psychosocial intervention for couples. They attended nine sessions with Jane Bausch, LICSW, a clinical social worker at Dana-Farber/Brigham and Women's Cancer Center. The biweekly consultations, about 90 minutes each, centered on topics such as building a positive social support network, couple communication, learning new coping strategies, caring for children when a mother has cancer, and enhancing intimacy. Even before completing all of the sessions, Gruber could see a difference in how she and her husband were interacting - and coping with her cancer.
"We've definitely benefited from our sessions with Jane," Gruber says of the program. "Jane has helped us to listen and support each other, and she has given us a safe environment in which to talk about our deepest fears. It's important to make the time and effort to support and protect each other, be good listeners, and learn how not to wear each other down. Although this is scary stuff to talk about, when we did I think we both felt better - about ourselves and our relationship."
Early insights
Kayser first came up with the idea for a couples study in 1996, while working on a proposal to the National Cancer Institute about a psychosocial intervention with breast cancer patients. "There were support groups and individual counseling offered to patients, but there were very few services for couples," she recalls. "The research showed that support - especially emotional support - from an intimate other is important for patients, yet from an intervention standpoint, there was very little to encourage that kind of aid. Since I have always taken a systematic, family-oriented approach to disease, I figured, 'Why not try it?'"
Working with Lawrence Shulman, M.D., vice chair for clinical services in Adult Oncology at Dana-Farber and Brigham and Women's Hospital (BWH), Kayser completed a pilot study in which seven couples facing breast cancer participated in the "Partners in Coping" program at these two hospitals in 1996-97. Each couple took part in 10 private sessions, led by a social worker trained in a treatment protocol that dealt with topics similar to those covered in the current study. The couples filled out questionnaires before, during, and after the counseling. Based on the findings, the program was refined. "Patients in the pilot program were stunned at how much it helped," says Dr. Shulman. "Frequently they found themselves dealing with issues that had not previously come up, but had been smoldering beneath the surface. I've seen these issues arise with patients since the 1970s, and while some couples could handle the situation better than others, this was the first time they had a well-regimented protocol to help them. It was terrific."
Pamella Pingeton was a breast cancer patient at DFBWCC with two young children when she and her husband, Michael, participated in the pilot study in 1996. She still remembers its impact. Through her sessions with another DFBWCC social worker, Jane O'Rourke, LICSW, she came to understand the alienation her husband was feeling and learned to accept that not all her friendships were as strong as she thought. Most importantly, however, she developed a way to discuss her illness with her 5-year-old daughter, Hannah.
"My first fear was that I wouldn't see my kids grow up," recalls Pingeton. "My daughter was just starting kindergarten, and both she and I were very afraid of what might happen. Jane helped me find the words to speak with Hannah about my situation. I've been cancer-free since October 1996, but I've gotten a number of calls since then from friends who want me to speak with someone who was just diagnosed. Because of the program, I'm able to talk about it much more easily."
Encouraged by results in the pilot study, Kayser sought funding for a more comprehensive evaluation study with the help of Dr. Shulman and Nancy Borstelmann, M.P.H., M.S.W., clinical supervisor for oncology social work at DFBWCC. Support came in 1999 from the Massachusetts Department of Public Health, which awarded the study a three-year grant from its Breast Cancer Research Program. Additional help came from private donations.
Finding the answers
Couples in the current study are randomly assigned to one of two options. Couples in "option 1" (such as Gruber and Lodi) are scheduled for nine private sessions with a clinical social worker trained in a treatment protocol that covers specific topics related to coping with breast cancer. Couples in "option 2" are provided with access to a social worker trained to help them with individual and family counseling as well as crisis management. The structure of the study is such that all types of couples - young, old, same-sex, childless, etc. - are eligible to participate.
Last summer, experienced oncology social workers in the Gillette Centers at DFBWCC and MGH learned how to lead sessions in the study's specific subject areas. Staff at both institutions began spreading word among their patients, and by fall the first couples had joined the project. As Kayser, Borstelmann, and study coordinator Barry Feldman, M.S.W., LCSW (also with Boston College's Graduate School of Social Work), quickly discovered, patients and partners voiced specific concerns.
"Communication is a key issue, as are the different ways each partner copes with the disease," explains Borstelmann. "A couple that has different coping styles might work well together on a daily basis, but when dealing with the stress of the illness, they may need to talk about some changes that would help them better support each other and the relationship."
For Liz Gruber's husband, Rus Lodi, the biggest hurdles were learning how to talk about the illness his wife faced while at the same time fearing a worst-case scenario. "It's really hard news to deal with, and when I came home tired at the end of the day, my tendency was just to run away from it," Lodi admits. "At the same time, the impact of how I would feel without a mate became very real, especially when I had to go places without her. I remember going to a soccer game with the kids when she had to stay home, and everybody kept asking, 'Where's Liz?' I wanted to share my feelings, but it was hard to find the words."
Bausch, whom Gruber and Lodi both credit with helping them find the right words, believes a key benefit of the study is the opportunity couples have to share their greatest fears - and consequently learn more about each other. "I'm there to help negotiate difficulties," Bausch explains. "Couples in a medical crisis may feel more comfortable talking with a trained counselor, and this can help them better understand the other partner's feelings."
For Lodi and Gruber, one reward is being able to enjoy life as it was before her diagnosis. They can again visit the park with their kids, ski, share kitchen duties, and look forward to running more marathons together. At the same time, they have made a commitment to spending a quiet dinner alone one night each week just talking.
"One of my kids said something that I think is true," says Gruber. "Going through an ordeal like this brings you closer. It's a test of your relationship with everyone - your husband, your family - and hopefully we'll be better for it in the end. I do know we've learned to listen and care for each other more. That will bring us closer than ever."
(Turning Point, Spring/Summer 2000)
