with me. From then on Jane often spoke her thoughts and asked me many questions. It was as if she thought she could talk her way out of that room. Future plans became an important topic. Jane told me about a trip she would take to a secluded cabin up north to restore her emotional and physical health. She described the two-rut road leading to the brown A-frame cabin that needed painting; the surrounding woods rich in flowers and wildlife. “ You can always gain strength from a place like that,” she assured me. This adventure was to be fol lowed by a vacation to the beaches of Hawaii with her boyfriend. After that maybe some family life, adopt a couple of kids. The excitement and enthusiasm in her voice made it all possible. There was no doubt it would happen just that way. Total body radiation, the second phase of her induction, brought on severe diarrhea. The combination of nausea, vomiting and diarrhea began to take its toll and her temper began to flare. Jane verbally lashed out at everybody and everything. None of us—doctors, nurses or fam ily— could do anything right. Mucositis dug deep holes in the epithelial lining of her mouth. The pain became so intense that Jane had to give up talking and then even whispering. A morphine IV had to be initiated to control the pain. But words were still important to her. She would write on a piece of paper “ Talk to me.” I would ramble on about my daily routines, what recent mischief my six-year-old had been up to, or my misadventures on the softball field. Any subject at all earned a smile. These stories were her connection to the healthy outside world she so desired. They were antidotes, a type of fix that helped keep alive her hope of leaving this room. The day of transplant came and Jane received her sister’s marrow. One factor in her favor was that the two were an excellent genetic match. After eight days of watching Jane’s body and health deteriorate because of the treatments, it was a tremendous relief to do something positive. With her sister’s marrow cells in her body, Jane had the potential to live a long life, free of leukemia. This was cause for celebration and Jane, with her family, took advantage of this. There was music, dancing, and all kinds of expressions of joy. Despite the pain from the mucositis, Jane talked a lot that day. The two sisters joked and laughed about their new attachment. Jane would now love tennis and classical music. “ You’ll be much shyer now,” Jane’s sister assured her. Jane called it “ my first big step toward the door out of here.” The period between induction and the point at which the new marIt wasn’t that Jane didn’t take her illness F seriously, i t ’s just that she decided ■ not to choose sadness. row would begin to produce adequate white cells is the most dangerous time. The medical procedure has totally shut down a critical body system, and it will take two to three weeks for the new marrow to restore minimal immunological function. This is when lethal complications occur most frequently. One man, a year after his transplant, described this period as a “ living hell, a time of pain, fear, and confusion.” There was a woman who let out a loud scream when she woke up to see an unmasked face in her room spreading what she thought would be deadly organisms. “ You’ re k i l l in g m e !” she shouted. The patient’s vulnerability is terrifying. We all go from hour to hour, looking hard for any indication of change. I see people holding their breath waiting for you to tell them what their temperature is. Any fever, cough, rash, weight gain, or chill is cause for serious concern. Jane had a fever on the third day after transplant and the search for a cause was on. None of the cultures identified a possible pathogen. After a barrage of inconclusive diagnostic tests, she was placed on three antibiotics and amphotericin B, an antifungal agent. We had no specific target, so we had to use a shotgun approach. Jane reacted to amphotericin B with violent chills, literally bouncing off the bed. The morphine that controlled the mouth pain, along with the Demerol needed to control the chills, and the antiemetic to allay the nausea, had her living in a chemical fog. Time and place became all jumbled. As Jane’s dependency and confusion increased, she struggled to “This is one hell of a weight reduction diet you got me on pal.” keep herself together. “ I’m still here and I’m still me,” she reminded us several times. At this point, Jane had lost her hair, her smooth, soft skin was severely disfigured by a rash that extended from head to toe, and a buildup of fluid made her puffy. Her eyes were dull and tired. I would look at her pre-transplant picture outside her door and wonder who that was. Then, 16 days after the transplant, the white cell count returned. Even though it ’s supposed to happen, it has the feel of a miracle. Within a few days Jane’s mouth had healed significantly. Her fever had relinquished its hold on her body and she could talk again. The most popular word became discharge and Jane began to take seriously the prospect of leaving the hospital. In a few days she would leave the bone marrow transplant unit for a step-down unit for further recovery. If all went well, Jane would go home in a couple weeks. I imagined her future plans coming true. I saw her walking through secluded pines with her hair tied up in a red checkered scarf, her dog, whose picture hung all over her room, running circles around her to celebrate their being together again. I saw her laying in a bikini on a white sandy beach. When the day of transfer came, I had an enormous sense of relief and joy. Despite the fact that Jane’s course was complicated by graft vs. host disease, it looked as though she would survive. As she was packing she said, “We’ll have lunch once I make it all the way out of here, another chance to talk everything over.” I took that invitation as a promise. Weeks after the transfer she was still in the hospital. The graft vs. host disease, the new marrow turning against an unfamiliar landscape, was raging. My visits became short and few; I was clinging to the idea that she was a survivor and more time in her room might have convinced me I was wrong. There were rumors, just before I had a few days off, that Jane was making progress again. I smiled and still counted her a winner. The Ending It was Monday, the Fourth of July, at 11:40 a.m. that Jane was pronounced dead. When Berry called earlier that morning I knew from the slowness and deep tone of his voice that something was terribly wrong. I had worked with him long enough to know what kind of event did that to his voice. “ Jane is dying in MICU, she had a respiratory arrest and the decision has been made to shut off the vasopressors,” he said. “And the family asked for you.” I said nothing, just stood there with the receiver in my hand shaking my head no. After a minute Berry said, “ It’s your choice about coming in or not.” The 10-minute drive to the hospital was not long enough to prepare myself for Jane’s new room. There wouldn’t be any equipment that I hadn’t seen before, no tube invading her body that I hadn’t witnessed in others, but when I walked down the hall my stomach was queasy and I was shaking. You could feel the pain when you walked into the room. You could see how it distorted the shapes of the people, their bodies bent over and their faces wrinkled with it. When Mary, Jane’s mother, looked up and saw me, she said my name and reached toward me. I took her hand and felt the pain even more. How much more pain could this room stand ■without exploding! “ I’m so sorry, it’s not supposed to end this way” was all the consolation I could manage. “ It’s hard to believe, it ’s a nightmare, but I can’t wake up.” “ Is there anything I can do?” “ No, I don’t know, we’ re stopping some of the medicines.” “ I know.” “ Is this the right thing, am I doing the right thing?” “ You know that she wouldn’t want to prolong the suffering when there was no hope of surviving.” “ She told me that many times, let me go. Mom, when it ’s time.” “ Then you’re doing what Jane would want. The doctors give her no chance of survival.” “ It just hurts so much to see her this way.” Then the tears came again. When the va sop re sso rs were stopped, her blood pressure decreased to almost nothing. The ventilator would keep her body going a little while longer. Minutes possibly, maybe hours. How much more pain could this room stand without exploding? The nurse from the MICU stopped coming in the room now that I was there. Jane’s sister leaned toward me and whispered, “ Jane’s not here anymore.” In a certain sense she was right. Not one of the physical features of that body in the bed resembled that of the attractive 23-year-old woman who came to the hospital for a transplant. The bald, swollen head was dark red; dried blood covered the lips and filled the mouth. There comes a point when you want to turn your head, avert your eyes. How do you let someone die with dignity when her body is literally falling to pieces? Often you lose the person before the body—supported by medicines, ventilators and pumps—is gone. The difference between the spirit and flesh is finite, and slowly transgressable.... —Charles Wright In 40 m inu tes Jane ’ s body caught up with her soul. When the equipment is shut off, the silence is overwhelming. I wanted to hear Jane’s voice again. t 30 Clinton St. Quarterly-Winter, 1989-90
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