Working and Living With Cancer
Elizabeth Edwards's courageous and public battle with cancer has focused national attention on a struggle many families face: how to balance family and work responsibilities with a loved one's life-threatening illness.
My family confronted this difficult question in 2001. At the time, my company, XM Satellite Radio, was a start-up, poised to debut a national satellite radio service. After my wife, Mary Beth Durkin, and I watched the successful launch of one of the company's satellites, she began displaying severe flulike symptoms on the flight home to Washington. Mary Beth went to the doctor, who ordered several blood tests and then delivered the shocking news that Mary Beth had leukemia.
Mary Beth, who had worked in network news for 15 years, brought a journalist's drive to her research, and we quickly became experts on the disease. She underwent chemotherapy treatments at Johns Hopkins to kick the leukemia into remission, only to relapse 18 months later. After several rounds of chemotherapy and radiation, she had a stem cell transplant on June 6, 2003, at the Fred Hutchinson Cancer Research Center in Seattle. Karin Uhlman, a lovely woman from Iowa, spent a few hours donating stem cells, and it saved my wife's life.
After the transplant, Mary Beth suffered through a grueling, year-long recovery. Today she is vibrant and healthy, and the painful experience is fading. But during this difficult time, we learned a lot about balancing family and work responsibilities. We never seriously considered my leaving XM to care for Mary Beth full time. Like most families, we needed the income and the health coverage that my job provided. In addition, the demands of launching a business meant a leave of absence was not in the cards.
However, emotional considerations weighed as heavily on us as practical concerns did. Continuing to work was important to me and to our family. As many who have battled illness know, families immersed in medical chaos strive for a sense of normality. You want your kids to go to school, see their friends and live as normal a life as possible.
For me, work was a refuge from the illness, a place where I could reclaim a small sense of control over our lives, which felt lost in doctor visits, medical procedures and long courses of medication. Mary Beth recognized this and used to say, half jokingly, that if I stayed home, I would only add to her medical problems by driving her crazy. My quitting work would have felt like surrendering to the illness.
We never doubted Mary Beth would recover, yet I was able to continue working only because Mary Beth was the ultimate fighter -- courageous, focused and always positive -- and because we had an amazing support system. Families coping with a medical crisis desperately need the help of friends and relatives. Ours rose to the task. My colleagues at XM raised the level of their workplace performance, and they pitched in to help. Neighbors and even strangers delivered meals to our home and provided rides to doctor's appointments.
Unfortunately, many families battling cancer do not have the luxury of deciding whether a parent or spouse can leave work and care for a loved one full time. They, like many people we met or heard about who were battling illnesses, are just focused on survival. They include a middle-aged man with no health insurance who had to take out a second mortgage to pay for his transplant and a young man whose fiancee bolted when she learned he was sick.
Mary Beth volunteers with patients who have recently received leukemia diagnoses. We tell couples what worked for us but always emphasize that they should do whatever is right for their family regarding work, children and other decisions. I always share the Chinese proverb we lived by during our ordeal: "You can only go halfway into the deepest forest -- then you are coming out on the other side." It worked for us, and I hope it works for the Edwards family.
The writer is chief executive of XM Satellite Radio and a board member of the Marrow Foundation.
