Saturday, April 26, 2014

Happily Ever After

I'm writing a story. Most of us are, probably. Our hopes and dreams and fears become a future that we envision for ourselves, and even the present that we perceive. When Dave died, my story took a turn. I should step back, I guess, to the role leukemia has played in my story over the past four years.

When I checked myself into the hospital on Labor Day weekend in 2010, I'm not sure what was going through my mind. I think that I had come to the conclusion that it was the best, or even the only, way that I wasn't going to die; I remember feeling fearful before that point but not after. The story that evolved for me was that I was going to sail through the therapy and be well. And for the most part, that's what happened. I never looked back, never felt fear of relapse.

I relapsed, and the story became that I would plod through and come out on the other side. There is no sailing through this process; it's too long, too slow, too variable, too open-ended. Still, the story was always that I would do the work required and rebuild. At my sickest, in the hospital, I felt some of those fears again, but as I recovered they faded. 

I had a story with Dave in it, a story where we met up for a beer and looked back on the craziness in the companionship of shared understanding, shared trauma, shared triumph. Then Dave stepped out of the story, and my confidence disintegrated. I began to tell stories of motherless children and young widowers, stories of liminal moments when I watched my dreams die.  Every effort to organize my paperwork and deal with old filing would make me wonder if I was "getting my affairs in order." I would go into a dressing room and think, "What's the point of buying a new sweater if I might die?" 

The point is that a new sweater is part of a different, better story, that I can tell instead. 

Lying in bed one night, it came to me. I am not preparing to die. I am preparing to give birth. Just as a mother will "nest" in anticipation of a baby, I am setting the stage for a new life. As in the days before a new baby comes, especially the first, there can be anxiety about the risks and uncertainties the future holds, but the overall emotion is positive. I feel joyful at the prospect of integrating the stories this new marrow brings into my own; I'm ready for this experience but also not ready in the way that one is never truly ready for the birth of the first child. It is going to come, and it will follow certain patterns, but the rebirth will also be unique and unpredictable in unknown ways. 

If the current story is too dark and too scary, tell a different one. Choose your own adventure. But not the one where you get eaten by aliens. 

Tuesday, April 8, 2014

The Dark and the Light

Last Friday afternoon I received some wonderful news: my donor is confirmed and I will receive a transplant in May! Elated as I was to hear and share this wonder of fortune and generosity, there was someone I couldn't tell, and it cast a shadow over my own celebration. My friend Dave, who had received a transplant as part of his treatment for AML last September and has been a source of advice and encouragement for me since my relapse, was in a coma. Saturday he died; his own leukemia had relapsed and the subsequent chemotherapy was too much for his weakened body.

When I checked myself into the hospital three and a half years ago, I made a conscious choice not to think about any aspect of my treatment that was beyond my control, not to study relapse rates or side effects. I didn't join patient forums where people chat about what's going wrong. I could talk to Dave because he wasn't like that; no matter how bad he was feeling he was confident that he would feel better, and I could look to him as someone who was chugging along, ahead of me in the process. Now here I am, despite my better efforts, confronted with the reality of where things can go wrong. It is not that I have ever pretended they can't, but I haven't had to face the dark quite so dramatically.

Trying to will away the truth of suffering only makes it meaner and stronger. I'm working on taking my own advice; lying awake at night concentrating on what is happening right now, knowing that I am breathing, that I am warm and safe, that my family is near. Focusing on not constructing scary fantasies, and on mourning a loss as what it is rather than making it representative of something larger. I won't dishonor Dave's death by making it a source of fear for me; it is a terrible loss and one that demands no deconstruction. 

I am grateful that Dave was a gifted musician who left a wonderful recorded legacy through his band Brown Bird. Even though I'll never be able to give him another hug or send him another text, I can hear his voice and his art.
This smile makes me smile. Travel light, Dave.