“The thing I remember most about the weeks after the transplant was that everyone who came in to see me was wearing a mask. I didn’t have to wear one, but they did. Day after day, week after week, all I saw of the people I loved was the little rectangle of their faces — eyes and forehead — that the mask did not cover. Everyone who touched me was wearing gloves, and I grew to miss that, too, the feel of holding (my partner’s) hand, the touch of my sisters’ and friends’ lips on my cheek.”
In this quote from her 2014 memoir, Everybody’s Got Something, morning news show veteran Robin Roberts crystallized the sense of disconnection ubiquitous among stem cell and bone marrow transplant, or BMT, patients. Ms. Roberts — who anchors ABC’s Good Morning America — received a stem cell transplant at Memorial Sloan Kettering in the fall of 2012 to treat the life-threatening bone marrow disorder myelodysplastic syndrome (MDS).
For the hundreds of adults who undergo stem cell or bone marrow transplants each year at MSK, mostly for blood cancers, Ms. Roberts’ book relates a familiar experience. Beyond the physical difficulties of the treatment itself, this type of transplantation requires prolonged isolation from everyday life, adding emotional challenges to an already steep recovery.
“With any diagnosis that threatens your life, even for patients with the greatest amount of support, there may be a sense of aloneness at different points in the illness and treatment experience,” says MSK social worker Margery Davis, who works with patients on the Adult Bone Marrow Transplant Service. “For transplant patients, there’s also a physical isolation and restrictive lifestyle imposed by the treatment that’s very different from other experiences.”
Creating Comfort during the Hospital Stay
During hospitalization, which frequently ranges from two to six weeks, it’s paramount to keep bacteria, viruses, and fungi from infecting BMT patients — particularly for those receiving a donor-derived, or allogeneic, transplant, whose immune systems are being entirely rebuilt as these “foreign” cells engraft in their bone marrow. That’s why all visitors, along with medical staff, bear the rectangular visage of masks and don gloves, as Ms. Roberts poignantly describes. It’s only after patients’ blood counts begin to rise again that they’re even allowed out of their hospital room to walk the halls.
This isolation doesn’t have to equal solitary confinement, since a small circle of family and friends can spend time with BMT patients both in the hospital and at home in the first months after discharge. Instead, the separation stems from being deprived of normal sights, sounds, smells, tastes, and touches along with regular patterns of socializing, working, shopping, and moving about.
“People generally feel well taken care of here, so I wouldn’t say the isolation is only because of the environment and the masks and gloves,” Ms. Davis says. “I think the room isolation contributes to feeling disconnected at times. It’s hard to cope being in a room that represents their illness and treatment 24-7.”
To compensate, some patients outfit their space for the long haul with homey touches such as comforters, photographs, and simple wall hangings, says Ann Jakubowski, a physician on MSK’s Adult Bone Marrow Transplantation Outpatient Unit. They can also shun hospital gowns and wear their own leisure clothes during much of their stay.
Making Adjustments at Home
Psychologically, a far more vulnerable time for most BMT patients is the 100 or so days after they leave the hospital, according to Dr. Jakubowski and Ms. Davis. At home, a multitude of adjustments await, all to minimize germs: Dirt and dust are enemies. Many foods are discouraged. No taking mass transit, no eating out, no venturing into crowds. Visitors must be limited and screened to make sure they’re not sick. Even the family pet — because it may carry bacteria or other infectious organisms — might have to temporarily live elsewhere.
“For some people, their dog is like their baby, especially for those who don’t have kids,” Dr. Jakubowski says. “It’s really hard on them. There are a lot of rules and recommendations they are given while their immune system is suppressed…all trying to protect them.”
Unless they’re able to work from home, many patients must also leave their jobs for at least three months, which can add to the mounting financial strain of treatment. Some people also experience the long separation from work as a blow to their identity. Creating structure around these home-based months — when patients are encouraged to limit outside activities to only frequent follow-up medical visits — is key. Quiet routines that include bathing, exercise, reading, and light household chores such as folding laundry can help focus patients during seemingly endless days.
“I think the slow recovery is very hard for people to sit with,” Ms. Davis says. “People need to get back to work for financial reasons, but also for purpose and meaning in their life. They need to create a structure for themselves without being able to work.”
Strategies for Recovery
To smooth recovery psychologically and physically during isolation, Dr. Jakubowski and Ms. Davis offer the following advice. These tips may be helpful not only to patients who have undergone BMTs but also to those whose immune systems may be compromised due to chemotherapy or other cancer treatments.
Yes, your energy is limited, and you can’t hit the gym. But while you’re hospitalized, get out of bed at least twice a day, if possible, and do the exercises hospital staff members recommend, which reduce the risk of infection and help maintain muscle tone. At home, short treks outside (away from crowds) help build endurance, and wisely selected video fitness games such as tennis, basketball, or bowling offer a surprisingly effective workout. “It’s about keeping a positive perspective and moving forward as opposed to being in a sick mode,” Dr. Jakubowski says.
Virtual connections — through email, Skype, and social media outlets such as Facebook — can fill the void while face-to-face contact is scarce. MSK offers the online community Connections for patients and caregivers to give and receive support. Just be careful about chat rooms and websites operating without oversight from a major health organization, Dr. Jakubowski says, since information may be misleading or wrong.
“With the Internet, it’s easier to keep some connection with other people,” she says. “You can see and hear them in ways that wouldn’t have been possible ten or 15 years ago. And in terms of being able to talk to your kids while you’re in the hospital, or talk to your friends, being able to use Skype is huge.”
Take a taste.
The chemotherapy and radiation typical before stem cell transplantation, as well as some of the medications needed to protect the transplant patient, temporarily affect many patients’ sense of smell and taste, lowering appetite and causing varying degrees of weight loss. Despite your aversion, “keep trying tastes of everything — salty, sweet, and different textures — to see what works right now,” Dr. Jakubowski suggests.
Focus on the end game.
Set small, short-term goals such as attending a social event (with your doctor’s blessing) so you have something to look forward to. “It’s a relief to go even to the grocery store,” Ms. Davis says. “It’s a sign you’re moving toward recovery, toward normal life.”
But don’t do too much, too soon, even if you’re feeling stronger, Dr. Jakubowski warns. “Some patients live by the rules…and others feel very cheated that things aren’t normal. It’s maybe a year of your life, but if it’s what it takes to save your life, try to hang in there.”
Appoint a “spokesperson” who can keep others in the loop about your transplant and recovery. This person can also help set expectations for your at-home healing period. “Patients say that everyone expects them to do everything they did before, but just because you’re home doesn’t mean you’re back to normal,” Ms. Davis says. “It’s a very high-risk phase, and I think a sense of isolation comes when people have a different schedule for you to get back to normal than the real schedule.”
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