My 14 vials of blood history.
The countdown to the transplant has begun. We said goodbye to my oncologist—until the transplant team releases me, in about 4 months. On Tuesday, the 30th of July, Mariya and I went into the SCCA together and began the process with a blood draw—12 vials for Mariya, 14 for me. Blood holds the key to so much on our lives, and each vial will tell a story of past or current infections, whether or not we have enough potassium or vitamin D, the current status of our red and white blood cells, and more. We each have our own team, from doctor to nurse, focused on us and our well-being separately from the other, as it should be.
We have left behind the smorgasbord of every cancer imaginable to a single-minded focus just for people with blood cancers who are getting transplants. “Transplant” is its own world and held well away from the rest of the hubbub of the SCCA, mostly to keep our fragile and weakened immune systems safe.
In this past week, I met with a bewildering array number of specialists—from oral medicine to pulmonary function. I got another bone marrow biopsy and spinal tap to be sure I am still in remission. I got another unit of blood while the nurse and PA came in to tell me what new drugs I would be taking. (The one I find most interesting: synthetic bear bile). Each night, I have come home, my head spinning, my heart wanting to hide in a Netflix fantasy, and my body feeling like a horse at auction that has been thoroughly probed and examined.
Sorting through the reams of paperwork.
Steve and I had a hair raising meeting with the attending doctor who warned us about all the side effects and possible things that could go wrong in the transplant. After that meeting, I seriously wondered if having a transplant was the wrong direction. Especially when she said the medicine had focused on quantity of life but they were just now really looking at quality of life after transplant. But it is no use asking questions, for the answer is always the same: “everyone is different”. So they don’t know. I don’t know. No one but God knows.
Don’t ask me what I feel, I don’t know that either. I feel the innocence of my body. It feels happy now that it is not assaulted with chemo and I don’t want to whisper out loud what I know is coming. The nausea and fatigue and big risk of infection that will follow the so-called conditioning chemo, radiation and the transplant itself. People tell me not to focus on that—to be hopeful. And I am, but also as Maya Angelou says: “Hoping for the best, prepared for the worst, and unsurprised by anything in between.”
I have lived my life by meeting it with energy, even if I had to hide out for hours or days afterwards to repair myself. That is how I know I am more an introvert than people know and why I fool them and often myself in the process. I could do that now—by telling you that all will be well. Instead, I will confess the things I fear before I tell you what lifts me up again. During the dark moments, I come to a place where there is no fooling to be done. I feel like a soldier who has been through several hard battles. Now on leave, knowing I must return to the battlefield, I struggle to stay in this moment—this goodness; where vigor belongs to me once again and appetite feels like the kiss of life itself. A cold shudder runs through me as I consider meeting once again with exhaustion so deep I feel more zombie than human. Nausea will wrap its cold arms around the center of my being. I will feel like a burden to my family. I become an existentialist who has painted herself into a philosophical corner.
Painting on the Transplant Floor.
And then, I do that crazy imaginative thing. I paint a window and I climb out of it. From this place, I witness myself holding all that dread. And I know fear of the unknown future is quite literally insane. I take a deep breath and I let go. When the Future is Now, I will know it, moment by moment. Until then, it is just thought. With my Beginner’s Mind learning as it goes, this happens several times a day—the apprehension, the epiphany and the rescue. A bright light shines on my family and friends, the life I have been lucky enough to lead, and the beauty I have beheld. My spiritual practice is to participate in life, just as my church is Nature. I wouldn’t want it any other way. I welcome this education. I never imagined that Cancer would be the teacher that it is.
17 days to transplant.
“By not knowing, not hoping to know, and not acting like we know what’s happening, we begin the access our inner strength.” Pema Chodrin