Ups and downs for cancer patients

Taking the steps to recovery
By Saul Wisnia

Julie Silver is focused on "healing optimally" after treatment.

Looking back, Julie Silver, MD, realized that one of the defining moments of her breast cancer treatment was when her 4-year-old daughter complained about her mommy "just sitting around." As a rehabilitation physician who prided herself on being active with her three young kids, Silver tried to keep up her strength during treatment, but sometimes it just wasn't possible. She had constant pain in her hands and feet that made the easiest tasks arduous and old joys like running around the backyard next-to-impossible.

One friend noticed a pattern. She wouldn't hear from Silver until eight days after her biweekly chemotherapy infusions at Dana-Farber, when her e-mails or calls would suddenly come in a torrent. A few days later, when another chemo dose loomed, she'd grow silent again.

"People feel that healing is a fairly smooth process – you go from having cancer to feeling better and better, and then you're done – but it's not that simple," explains Silver, who was 38 when first diagnosed in 2003 and is now in remission. (Silver leads patient workshops on survivorship at Dana-Farber; see Getting through each day.) "Setbacks and plateaus are part of the process. Usually you go to a doctor who gives you treatments that make you feel better, but with cancer you may feel worse before you can get better.

"And it's not always during the treatment itself that you feel your worst," she adds. Patients who are getting chemotherapy every second or third week, for instance, say they often feel sicker during their "off " weeks as their bodies try to recover from the physical onslaught of drugs. Since they are usually home during these periods, they don't have the constant reassurance of clinicians and support staff, sometimes resulting in stress for them and their families. And while some side effects associated with cancer therapy such as hair loss, nausea, and lymphedema (arm or hand swelling) are well known, there are many other emotional and physical "ups and downs" experienced by both adults and children during and after treatments.

Whether it's depression, dramatic mood swings, or fatigue that can make even simple conversations seem daunting, patients and families often must deal with these less publicized challenges along with the rest.

"I went to the mall the other day with some friends and had a great time, but while we were driving home I just started crying," says Von Marie Rosario, a 19-year-old being treated for Hodgkin lymphoma in Dana-Farber's Jimmy Fund Clinic. She attributes her frequent mood swings to the steroids she takes every other day in conjunction with her weekly chemotherapy. "I get easily angry and easily sad, and it's hard for my friends to understand it."

Family members who do understand can also find this emotional roller coaster taxing. "It affects everybody in the house," says Karen Bernard, whose 16-year-old daughter, Kelley, is being treated in the Jimmy Fund Clinic for acute lymphocytic leukemia (ALL). "She's a friendly, warm-hearted person, so when she starts lashing out during her big steroid week, it really stands out."

Fatigue can be another problem. Rosario took a leave from her job at a clothing store when she started treatment in April, and even going back to a few shifts a week has been difficult. Vinnie Corsaro can relate; a 56-year-old carpenter and teacher, he was forced to stop work last year during treatment at DFCI for tonsil and lymph node cancer, and still has ringing in his ears and numbness in his feet months after finishing chemotherapy.

For Corsaro, however, the toughest challenge has been the impact on his taste buds – another side effect he hopes will disappear in a year or two. "Most things don't taste very good, and I don't enjoy cooking anymore," he says. "Sometimes the cure feels worse than the disease."