Most of the conversation in that room had the lightness and flavor of an exchange between friends at a local bar. It felt good after the somber tone of most hospital rooms. I would invent reasons to spend time in her room. It was a refuge. It wasn’t that Jane didn’t take her illness seriously, it ’s just that she decided not to choose sadness. Working in an area with high mortality rate, I try to keep some perspective. Somewhere between 30 and 60 percent of the people who come to this unit for bone marrow transplant (BMT) will die. They come here in hopes of recapturing the life that their disease is taking away bit by bit. Some of them arrive with almost no physical resources remaining. Clar- risa is five-foot-eight and weighs one hundred pounds. Her pale skin is stretched over a stick frame that could snap and break to pieces any minute. She moves slowly, as if she were conserving energy needed elsewhere. Others arrive looking healthy, smiling as if arriving at a vacation spa. John, for instance, is 40 but appears 30, with muscular build and ruggedly handsome face. He walks quickly across the room in short, nervous steps. “ I'm ready for this. I feel great and I want to have this transplant done while I’m strong.” There is no way of predicting where these individual lives will fit into the statistics or how they might change them. Each time a patient arrives there is a conference at which the doctor, along with a nurse and social worker, explain the BMT process in detail to the patient and family. All the possible complications are reviewed. They discuss problems caused by the chemotherapy and radiation, the transplanted marrow rejecting the host body, and the com p lica t ion o f in fec t ions . No secrets are kept. But no one can answer their most basic question: “Will I survive this?” We are educated bookies giving odds in medical and statistical terms. It is as close as we can come to informed consent. Jane did not hesitate in signing the consent forms. The papers represented her hope; they made a future seem possible. Undertaking the transplant was attacking the leukemia directly. There was no doubt in her voice on the night before transplant. “ I’m a doer, not a talker,” she said. Jane’s immediate fam ily respected her decision and promised to be there with her. As they decorated her room with posters of handsome men and organized Jane’s other belongings, they made contingency plans for the next few weeks. Jane would never be alone unless she requested it; family members were assigned various shifts during the day. It was obvious how involved they all wanted to be. Here is how health literature defines the process: BMT is an experimental therapy used principally for the treatment of bone marrow malignancies (i.e. leukemia and aplastic anemia) and solid tumor malignancies (i.e. breast and lung cancer). An allogenic bone marrow transplant involves the removal of bone marrow from a healthy donor, with the infusion of this marrow into a recipient who has received super-lethal doses of chemotherapy and total body irradiation (1,000 rads). Following marrow infusion, there is a 2-to 6-week period before the donor’s marrow grafts can begin functioning. During this period, the patient is at great risk for lifethreatening infections and bleeding, which require antibiotic therapy and blood product support until the marrow begins to function. After engraftment, the patient may develop graft-versus- host disease (graft rejection). Rejection of the graft can lead to mild to severe post transplantation complications, including death. Mortality among transplant recipients is primarily due to graft-versus-host disease, infections, and recurrence of the original disease. (Bridget Carney, "Bone Marrow Transplant— Nurse and Physicians' Perceptions of Informed Consent," Cancer Nursing, October 1987.) Accurate though the definition is, it does not begin to explain BMT. To get the full story, one needs to know about individual cases, about human courage and perseverance. And about pain. But how to explain it? Whatever pain ach ieves, it achieves in part through its un- sharability, and it ensures this unsharability through its resistance to language. Physical pain does not simply resist language, but actively destroys it, bringing about an immediate reversion to a state anterior to language, to the sounds and cries ahuman being makes before language is learned. (Elaine Scarry, The Body in Pain, 1985 Oxford University Press, New York). What is it that I should have told Jane before she began the transplant process? Should I have given graphic descriptions of the suffering of other patients, complete with gruesome photos, to try and scare her away? To be fair, would I need to balance this with testimonials from patients who are home and doing well? She had been given an honest appraisal of her chances and been told about the problems inherent in the process and potential complications. The doctor had used the words pain and discomfort many times, but what did Jane think when she heard them? According to Scarry, the problem is that, “ physical pain—unlike any other state of consciousness—has no referential context. It is not of or for anything. It is precisely because it takes no object that it, more than any other phenomenon, resists objectification in language.” I doubt whether anything I could have said the night before could have dissuaded Jane, but I will always wonder if she knew enough and understood. The Process The first step in the pre-transplant prepara tion , the chemotherapy, began the next morning. Called induction, this is the point of no return. Jane’s spirits remained high despite the violent nausea that accompanied her chemotherapy. The cytotoxic drug punished her every attempt to eat. “ This is one hell of a weight reduction diet you got me on pal, quite effective," she told me looking up from an emesis basin full of half digested food, “ but I wouldn’t recommend it to anyone.” “Want me to sell your stock in Haagen Dazs ice cream yet?” “ No way!” she said. “When I get thin with this chemo you better tell your broker to buy you some stock because their sales volume will double.” With the onset of side effects, her thinking turned to deeper topics. Jane wanted the people around her to know her serious side and understand that she realized the danger of her situation. During a quiet moment alone she took my hand and looked in my eyes. “Are you afraid of dying?” she asked. I wanted to be strong. I wanted to answer no, but I knew she would see I was lying. “ Yes, I’m afraid.” “ Me too,” she said. “ I guess you’re in love with this life too.” We immediately changed topics, but this short exchange broke down any inhibitions she had about talking Clinton St. Quarterly—Winter, 1989-90 29
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