2003-06-26 - 12:10 a.m.
June twenty-fifth.
I'm probably the only one in my family who remembers what this day was eleven years ago. The day that should have been the first day of my sister's life. The date of the bone marrow transplant.
I am always reminded by the strangest things-- like the tall, waxy stalks of white blossoms on the yucca plants outside the door of our office. Because that year, searching for omens and signs of hope in everything I saw, I noticed those plants as if for the first time. If nature could produce this unlikely miracle, these beautiful flowers from a spiny, awkward plant, then anything must be possible....
In the verdancy of early summer, all signs of life seemed encouraging, and all superstitions meaningful. I avoided cracks and knocked on wood, wished on stars and full moons, searched a patch of clover until I found a lucky four-leaf.
There was hope. Oh, yes, there was always hope. The medical people always held out hope like a carrot on a long stick, even as her health deteriorated and options failed. Surgery and chemotherapy didn't work, but there was something else.... a bone marrow transplant. The best possibility would be to find a sibling match. Her three siblings sent in tubes of blood for analysis, and after what seemed like an interminable wait, a preliminary verdict was announced-- it would probably be me.
There was more testing, and they finally pronounced me a near perfect match. There was rejoicing and preparations moved quickly forward for the complicated procedure. Basically, she would be given drugs to completely destroy her own bone marrow and then it would be replaced with mine. She would have to stay in hospital isolation for 100 days to avoid coming in contact with any germs before her immune system had regenerated, but then she would be well.
When somebody you love is sick, you think "I would do anything...." Usually there is nothing anyone can do. But I had an opportunity to do something-- something that terrified me, even as I rejoiced along with the rest of the family that the prognosis was so good. From the very beginning, I decided that she must never know that I was afraid, that my terror of all things medical was giving me nightmares. I was even more afraid that fear would somehow taint the process, and so I buried it as far inside as I could, and assured everyone that I was eager to be the donor. The necessity to do that somehow kept me going.
She was admitted to the hospital in Omaha about ten days before the procedure, for the initial rounds of drugs. A hospital policy required that I be there, too, (in town) for the duration. Just to be sure that I did not die in route. It felt chilling to to suddenly become a valuable commodity, rather than a person.
My mother, brother-in-law and I moved temporarily to Omaha, finding a place to stay in the Porter House, one of those charitable homes for the families of cancer patients. It was inexpensive, but so unfriendly I worried about breaking one of the dozens of rigid rules every minute I was there. We didn't spend much time there, though, because most of our days were spent gowned and masked and gloved, in my sister's hospital room. Our days hinged on the the hospital's routines, the numbers on the charts, the terse and cryptic utterances of the doctors-- medical science's evaluations of the bald, skeletal little body that was my sister.
On the wall, across from her bed was a bulletin board that held her messages and keepsakes: drawings from the kids, get well cards. There was a picture of her from before she was sick, so the hospital staff could see what a beautiful and spirited woman she had been/was/would be again. And the nurses put up a calendar to track the progress of this fragile odyssey. June twenty-fifth was colored in like the sun, and the days that followed were numbered 1, 2, 3....
A few times I escaped and walked the unfamiliar streets, feeling reckless, but desperately needing some time alone. I found an outdoor outfitter store and bought a flashlight so I could read at night while the others were asleep.
I passed all the medical inspections and was cleared for the "harvest," as my operation was called. Sometimes a word will just absorb the brunt of my feelings about something, and I grew to hate the word "harvest." They used it completely without reference to this as something done to a living human being. I began to imagine myself as a wheat field, without value except for this one purpose, to provide a product. I suppose, deep down inside, I wanted someone to acknowledge that my contribution was important on a personal level, or to express some concern for my welfare, but that didn't happen. I was treated as a biological dispenser.
The morning of the harvest, I was taken to surgery at 7:00 am. I was so scared I could not stop trembling, but the anasthesia soon dumped me into unconsciousness. They punched six holes in my hips and through those about 200 holes in my hip bones from which they withdrew the bone marrow. A few hours later, I was awakened and dragged, barely conscious, back to the Porter House, where I sunk into a rabbit hole of pain and drugs for a day and night.
When I woke up the next morning, I knew what I had to do. I put makeup over the raw red skin on my eyelids where they had taped my eyes closed. I put on a loose dress to cover the ample bandage applied to my hips. And I went to my sister's hospital room. I smiled.
It was nothing. I didn't feel a thing. Slept right through it. I'm fine. Fine.
There was a mood of celebration. Pictures were snapped: she and I together, me beside the hospital bed, her cheeks temporarily flushed. It was to be a bond between us, an amazing closeness. Our aunt, who had been present for the triumphant arrival of the bag of bone marrow, told me "You have the prettiest bone marrow! It is bright pink, just like a cherry soda." And I held on to that image in my mind, the beautiful pink substance full of my legendary strength and immunity, bringing her health, saving her life. No sacrifice would be too great if that were true.
And then I was free to go home and heal. My everyday life floated into a holding pattern while I recouperated and tried to keep the hospital experience at arm's length. On a whim, I bought a bow and arrows and spent evenings trying to master the zen of archery. Concentrate, perfect your stance, pour all your energy forward, fly straight, hit the target....
I got frequent progress reports from Omaha, and one letter from my sister in the weeks that followed. The handwriting was unfamiliar to me, shaky and childish, and the letter was not quite coherent. This from my clever, witty sister with a master's degree and a talent for poetry. It made me incredibly sad.
The next time I saw her, I knew something was wrong. She looked diseased in a new and frightening way: spotted skin, yellow eyes. The only thing that still resembled that smiling picture was her perfectly straightened teeth. The medical people kept telling us she was doing fine. For proof, they showed us the charts and the counts and the stats. These levels are up, those are down.... her body was a functioning medical machine. But I knew they were wrong, and so did one other person: our father. He is kind of an ignorant man, and his ignorance combined with arrogance so often led him to make dreadful mistakes. But in this, his instinct to mistrust the doctors and trust his own eyes was as accurate as the sense of a wild animal. There was nothing to do but pretend to believe and hope we were wrong.
Less than a month into the 100 days, they sent her home. I remember getting that call, that she was coming home, and thinking for just a moment that some miracle had occurred. Then I understood that she was being sent home to die. Two weeks later she gone.
In raw moments, I've looked for esoteric ways to blame myself. I've wondered if my fear and lack of trust in the medical profession somehow diluted the bone marrow.... if my going home to lick my wounds pulled too much energy away... But, no, I am not the center of the universe, and what happened is not and was not about me. I did what I could and it was not enough-- the disease was stronger. But it is a terrible thing to believe you are going to save the life of someone you love and have that effort fail. It is something I will think about the rest of my life and I'll always remember that physically as well as spiritually, a part of me died with her.
When I look back at the whole experience of her illness, I always remember the role that hope played in our lives, how hard we worked to find something in which to believe. We believed the doctor who told us she was "lucky" to have this form of cancer, with such a good prognosis. We believed in all their traditional "slash and burn" treatments. We believed in the power of music and inspiration and food and love. We believed in the energy healer who laid colored stones on her body and chanted. We believed in prayer and positive mental attitude. We read "Love, Medicine and Miracles" and "Why Bad Things Happen to Good People." We celebrated the good days and the kindness of strangers. She renewed her social worker license, started a quilt, began writing in a hardbound journal. Every hope, every wish of any of us always returned to her--Please, let her be well...
Sometimes I would confide in someone, like the nice lady at the Quaker church I attended for a while: my sister has cancer. And the sympathetic person would say, "I know how you feel.... my_______ died of cancer." It was all I could do not to scream "Don't say DIED. Everybody doesn't DIE! She's going to LIVE!" I didn't, of course, scream because people have their stories to tell and you have to accept a well-intentioned person's attempts to be kind.
But I never, ever say that to anyone, even though now I have a story, too. I say "I'm so sorry. But don't give up hope. Many, many people beat cancer these days."
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