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Voices of Hope & Healing
A Donor for What?
I received the news that I would need a bone marrow transplant quite by accident one day in the hospital when the first-year intern walked into my room and casually asked me whether I had found a donor yet. I had only completed induction chemotherapy but six weeks before.
"A donor for what?" I wondered.
With this innocent question, my life as an acute leukemia patient took a dramatic plunge into a new, more harrowing dimension. It had been difficult enough to be forcibly separated from my husband and young son for weeks at a time while I underwent highdose chemotherapy as a hospital inpatient. Now it appeared that I would need a bone marrow transplant (in an effort to assuage my escalating sense of panic, the intern's immediate response had been that she may have gotten me confused with another patient. Unfortunately, the only things wrong here were her timing and bedside manner). Bone marrow transplantation seemed so aggressive and potentially debilitating, and my needing one suggested that my leukemia was considerably worse than they had initially thought. Was a transplant a "last resort"? Was I that bad? Could people actually come back from something like this?
My transplant took place in April 2005, and I now have answers to those questions: I was never "bad," and yes, one can make a safe return from the alternate reality that exists within those four walls of our small hospital rooms. It was possible for me, and it can be possible for you.
Many of us have experienced the dehumanizing aspects of being a catastrophically ill patient in the hospital setting. No one cares that we were once highly productive, athletic, healthy individuals because we are now defined by our medical diagnoses and the complicated work-ups and intensive treatments that they require. We are set up for constant scrutiny and judgment from doctors, which invariably engenders fear and anxiety in our pass/fail system. This is enough to make anyone lose a sense of control over one's life and personal identity (perhaps even worse for us because we are also bald and faceless behind our protective masks).
As you move forward with your transplant preparations and recovery, it is important to appreciate that your diagnosis does not define you, nor does the situation in which you now find yourself. You are not a disease, and you are not a statistic. That piece of paper with your lab results isn't you – the "you" that is comprised of your soul and your beliefs, your feelings and memories of past experiences, and your mighty spirit that has enabled you to come this far in spite of having a serious illness. Each day, try to do something that nurtures who you are inside: watch a funny movie or listen to a book on audiotape that you connect with, devise your own menu with food choices that suit you (I found out early on that the kitchen could make me things other than turkey Tettrazini and Salisbury steak), choose your visitors (even though we are stuck in there, it is our room), and assert your needs when it comes to the management of your nausea, physical discomfort, and emotional stability. Your medical team should make clear your options here which will probably involve some combination of IV anti-nausea drugs, narcotics, and sedatives, and you can decide what works best.
In the immediate aftermath of that intern's gaffe, I felt like a bad person, like a failure, really. Over the years I have learned that I actually had nothing to do with getting leukemia, or with getting the kind that required a transplant. I wasn't bad, and it wasn't my fault; it isn't yours, either. I was still "me" the entire time, but it took a while for me to realize that (the judicious use of Ativan helped also). Connecting to your soul, to your spirit that sustains you amidst all the challenges—whether it be through watching your favorite sit-com, spending time with someone you love, expressing yourself fully and genuinely to your medical team and to everyone else around you—is where you can find solace. It is here where hope lives, and it is here where hope triumphs over fear.
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