Wow. It’s November. I don’t know how that happened, that February turned into November but it is now Day 75 since my transplant. I can cautiously say I feel better. I AM better. I am starting to heal instead of cope.
The blood infection is gone, though I am still on antibiotics. The CMV numbers are way low (which is great news) and the graft vs. host disease seems to be settling down. I did have to go on prednisone, which was awful but also good, as I have appetite and thirst again, and with that, something I had lost for a long time—energy to do things and exercise. I am still on prednisone and trying to get used to the rounded look of my face, but the dose is being tapered down and I will be free of it by Christmas…unless there are complications. “Complications” are the catch all term for all the things that can happen with a suppressed immune system, and there are quite a few. But we won’t go looking for them. Hopefully soon, I will no longer have steroid-induced diabetes. That has been quite the unwelcome learning curve! Soon, they should be able to let me off the immune suppressing drugs and let my body start functioning more naturally.
I had said that I was grateful to be cured by modern medicine but also shaken by the experience. And that I would sort out those feelings. Well, I have thought and thought about it. I know one thing for sure: I don’t know! The closest I can come to an accurate description of these past several months is that I was cured by a kind of super Ant Colony. I became my chart and the handling of that chart was well attended to, and signaled much of what came next. Doctors and Physician Assistants rotated in and out, nurses provided the only real human intermittent touch. Research was the ever present luminating force that provided solutions to very real urgent questions like when I had out of control CMV and the new clinical drug arrived to save my kidneys from the older medicine. Who can hate that? I am alive and cured because of this Ant Colony, industriously using all the tools at its disposal. Some of the means are outdated and we will look back at them as barbaric. But it was enough of the old and new, and as one of the first PA’s cheerfully said to me early on, this is a good time to have leukemia (and be able to survive).
Notice that I said cured, not healed. Healing is my job now. The soul splitting, body debilitating, shock of this experience will take awhile to restore to health.
Gratitude and appreciation continue to be my pillars of strength. I can’t do justice to what Steve has given me. He has been the constant steadying presence of my life here, and gave meaning to the word caregiver when I had nothing to give back at all. My women friends who gave him respite and me their love and support were critical to our ability to continue on. All of my tribe and friends and community have sent so much love and energy gave me the elements I needed to stay whole. The daughters are in contact nearly everyday and we have maintained an intimacy that we forged during this year together. Hey, I almost make having leukemia sound good!
Life is ever surprising, and I have surprised and astounded by the year of 2013 so far, in every way. Nothing I would have wished on myself, and I also know that my own little life is forever changed. I touched the cold hand of Cancer. That imprint will stay always on my skin and in my body. Maybe that’s a good thing, I can’t decide—for though I would have liked to stay innocent to this, and age as the healthy person who was never sick a day in her life, I didn’t get to choose that. What comes clean over and over is this: How we react to life’s circumstances is the real gold; everyone carries their own hard burdens and there is a lot of heart and courage and abundant Grace in the world. I will do my best to forget the worst of this sickness and its treatments and complications but those are keepers.
Still looking forward to being home by Thanksgiving. Barring complications.