To the Marrow
http://www.100md.com
《新英格兰医药杂志》
In the almost 40 years since the first successful bone marrow transplantation was performed, many books have been written about the process, its ethical and moral issues, and the reflections of patients and donors. Why, then, is Robert Seder's To the Marrow such a powerful book?
Seder's book is his day-by-day account of his own experience with an autologous bone marrow transplantation for lymphoma in 1992. He writes that the book was "pieced together" from notes and journals that he would have kept if "I could have written more than a few words a day during the transplant." The story he tells is an insightful and deeply touching account of his journey and of the people he met. Central to his narrative are his caregivers. He is grateful to his doctors, but it is the nurses who hold center stage. Some he loved, some he cursed, but the quality of his responses will not be forgotten: Sandy, his primary transplantation nurse, who was pregnant and "bringing two of us into a new world"; Elizabeth, his initial chemotherapy nurse, who "one day after I said something like — Who knows if all this is doing any good — she leaned over very close and whispered, `You're beating this sucker'"; and the unnamed nurse who told him, as he was about to be discharged, "`Oh, you sailed through it,'" as if he "should have nothing to complain about. `Shut up you, we have some really sick people on the floor.'"
Although the book is about lymphoma and bone marrow transplantation, Seder's experience could be that of anyone with a severe illness who is undertaking a risky and potentially fatal therapy. As he enters his isolation room for the first time, he realizes that he is near the hospital where he was born. He writes, "I'm an old elephant come home to die and cannot find the watering hole under the parking lot."
He relates the impact of his disease and treatment on his family, especially his wife, Jean. With increasing awareness, he describes how Jean had to move, parent a child, and continue to work. He looks forward to her visits, "But eventually she must go, not just to take care of our daughter, but because she must have time out of the hospital, and because, love her as I do, I must have time alone." He also recounts telling his children about his disease, which is compounded by the fact that his own mother had had cancer for 28 years without ever fully telling him.
The narrative of the actual transplantation — the drugs, the vomiting, the waiting for engraftment, and the fear of hospital discharge — are well known to both patients and health care professionals involved with bone marrow transplantation. What sets the book apart is Seder's openness on details as diverse as his description of total-body irradiation (something between being in an oven and under a broiler), the joy of fresh air (while waiting for the ambulance to take him to total-body irradiation), and the lack of ice for cold water. The fear he felt, when he thought he might not be accepted for the transplantation, is palpable: "I was more frightened of losing the chance than I was of the procedure."
Five years after the transplantation, there is a sense of foreboding. "I am still here," Seder writes. "Still breathing, still talking, still tickled to be alive. . . . It is never over. I am a marked man. I live with one eye over my shoulder and an ear to the ground. No more nasty surprises. Please." Seder, who was a theatrical light designer and writer, died a year and a half after finishing his narrative, when he received an unrelated bone marrow transplantation for myelodysplastic syndrome. The insights that he gives in his book will be illuminating for all who care for patients with severe and potentially fatal illnesses.
Robertson Parkman, M.D.
Children's Hospital Los Angeles
Los Angeles, CA 90027
rparkman@chla.usc.edu(By Robert Seder. 177 pp. )
Seder's book is his day-by-day account of his own experience with an autologous bone marrow transplantation for lymphoma in 1992. He writes that the book was "pieced together" from notes and journals that he would have kept if "I could have written more than a few words a day during the transplant." The story he tells is an insightful and deeply touching account of his journey and of the people he met. Central to his narrative are his caregivers. He is grateful to his doctors, but it is the nurses who hold center stage. Some he loved, some he cursed, but the quality of his responses will not be forgotten: Sandy, his primary transplantation nurse, who was pregnant and "bringing two of us into a new world"; Elizabeth, his initial chemotherapy nurse, who "one day after I said something like — Who knows if all this is doing any good — she leaned over very close and whispered, `You're beating this sucker'"; and the unnamed nurse who told him, as he was about to be discharged, "`Oh, you sailed through it,'" as if he "should have nothing to complain about. `Shut up you, we have some really sick people on the floor.'"
Although the book is about lymphoma and bone marrow transplantation, Seder's experience could be that of anyone with a severe illness who is undertaking a risky and potentially fatal therapy. As he enters his isolation room for the first time, he realizes that he is near the hospital where he was born. He writes, "I'm an old elephant come home to die and cannot find the watering hole under the parking lot."
He relates the impact of his disease and treatment on his family, especially his wife, Jean. With increasing awareness, he describes how Jean had to move, parent a child, and continue to work. He looks forward to her visits, "But eventually she must go, not just to take care of our daughter, but because she must have time out of the hospital, and because, love her as I do, I must have time alone." He also recounts telling his children about his disease, which is compounded by the fact that his own mother had had cancer for 28 years without ever fully telling him.
The narrative of the actual transplantation — the drugs, the vomiting, the waiting for engraftment, and the fear of hospital discharge — are well known to both patients and health care professionals involved with bone marrow transplantation. What sets the book apart is Seder's openness on details as diverse as his description of total-body irradiation (something between being in an oven and under a broiler), the joy of fresh air (while waiting for the ambulance to take him to total-body irradiation), and the lack of ice for cold water. The fear he felt, when he thought he might not be accepted for the transplantation, is palpable: "I was more frightened of losing the chance than I was of the procedure."
Five years after the transplantation, there is a sense of foreboding. "I am still here," Seder writes. "Still breathing, still talking, still tickled to be alive. . . . It is never over. I am a marked man. I live with one eye over my shoulder and an ear to the ground. No more nasty surprises. Please." Seder, who was a theatrical light designer and writer, died a year and a half after finishing his narrative, when he received an unrelated bone marrow transplantation for myelodysplastic syndrome. The insights that he gives in his book will be illuminating for all who care for patients with severe and potentially fatal illnesses.
Robertson Parkman, M.D.
Children's Hospital Los Angeles
Los Angeles, CA 90027
rparkman@chla.usc.edu(By Robert Seder. 177 pp. )