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An Excerpt From:
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Many fine books have been written by bone marrow or stem cell transplant survivors, but Across the Chasm offers a unique glimpse of the transplant experience - as seen through the eyes of a caregiver.
Twenty-seven-year-old Naomi Zikmund-Fisher was six months pregnant with her first child when she learned that her husband needed a bone marrow transplant. In the two years that followed, she grappled with the fear, exhaustion, anger, uncertainty, exhilaration and disappointments that are the core of the caregiver's experience.
Across the Chasm chronicles Zikmund-Fisher's day-to-day life, as she struggled to care for her husband, raise a young child and maintain her sanity. With humor and candor, she offers a vivid picture of the emotions and challenges caregivers face.
Date: Fri, 28 May 1999
Subject: Day +6
This morning, we mowed Brian's head again. He still hasn't lost his hair and he was getting a little fuzzy. We have discovered that when you shave your head and then let it grow out all one length, your head looks something like a koosh — you know, those little balls with the rubber hairs coming out from all sides.
The doctors at rounds were all giggling because yesterday, after the nutritionist noodged him about eating more protein, Brian ordered and ate four hard-boiled eggs. Let's just say he follows directions. Except when he's being stubborn.
Dr. S., his attending, is a very powerful presence and teases Brian a lot. You may recall that last week I asked her something and she said, "Don't worry about it. I'll tell you when to worry." Today I asked something, she told me not to worry, and I said, "Oh, I'm not worried. You made it clear I'm not to worry without permission!" This cracked everybody up, including her.
Today I was feeling really miserable and tired at the hospital. Brian and I had a long talk about what might help me feel better. I said one of the problems is that, by the time I get home and eat lunch, it's Eve's naptime so I don't get to see her much. Brian pointed out that the same hospital service that delivers his food will, for a fee, deliver food to me in his room. That way I could have lunch while I'm still with him and free up my former lunchtime to spend with Eve.
I nixed this at first. I said it was too expensive. Which caused Brian to give me the look you give someone just before you slap them for being so stupid. Sure, $20,000 in unreimbursed medical expenses we can handle. Just don't splurge $5 on lunch. Perspective is a wonderful thing. I'm glad Brian is still able to give it to me, because obviously I've totally lost it.
So Brian tucked me into his bed, got out the wooden-roller-massage-thingy someone had sent and rubbed my feet. Then we ordered lunch together and had a little picnic. It was very relaxing for me, although I felt a little silly having this guy with an enormous infusion pump attached to him take care of me. Which one of us is sick?
Speaking of which, in the middle of this his nurse came in and asked why I was in bed. I made the mistake of saying I was "not feeling well." She went white. It took some doing to convince her that I wasn't contagious, just grumpy and tired, and that I promised on 87 bibles to not come to the hospital if I was sick.
More tomorrow, and tomorrow, and tomorrow!
naomi
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All proceeds from the sale of Across the Chasm: A Caregiver's Story will be split between BMT InfoNet, which provides information and support to transplant patients, and The Brian Zikmund-Fisher Fund for DR Typing. |
Brian maintains a website with updates on his condition, advice for others facing bone marrow or stem cell transplants, and pictures from his experience. Please check out 'The Show Must Go On': Brian Zikmund-Fisher's MDS / BMT Page for the latest!