My title comes from my experience with the host of drugs that are my daily companions. One of them, Tacrolimus, makes my hands and sometimes my body shaky. At the same time, I have to give myself finger pokes and insulin shots in the stomach 3-4 times a day to combat the prednisone-induced diabetes I now have. With my hands shaking, I have nevertheless learned how to do this quickly in a restaurant bathroom, in the car, at the SCCA, etc. Every time I do it, I think about all the ways we do things though our hands shake, as we navigate Life—facing illness, the scary things we reveal or confess to, deciding to commit, deciding to leave, deciding to stay . . . bringing new life into the world, caring for our parents, starting a business, starting a trip, going on after someone dies or leaves. All of it. Hopefully I will be over this type of diabetes as I ease off the prednisone (Dec. 4) but it has taught me a lot. I have not learned simply about blood sugar and the work of the pancreas and adrenals and but also gained a new respect for what millions of diabetics deal with every day.
I had my last bone marrow biopsy last week. The news is all good, the procedure was the most painful I gave yet experienced. Pretty sure it was the technician’s fault it hurt so much but the bottom-line is that I cried out loud and continued on for several minutes after the corkscrew needle was taken out. I don’t easily cry and it surprised me. The pain that was just inside, beyond the needle, was not just for my own body and soul, it was also the Filipino woman searching for her children, for the death of my dear friend Marta, the African elephant slaughter, the vanishing orcas and salmon of the Salish Sea and all the pain and suffering of the earth. Steve was present, and I was infinitely grateful for his tender touch while the two technicians waited for me to get it together and the next doctor entered to give me a spinal tap (which went easily). That pain and that needle gave me permission to cry and I probably need a lot more of it.
Often when I say such things out loud, people get worried that I am depressed or holding onto pain that makes me sick. Since I have a dogged need to remain a witness and not turn away or numb myself out, I have developed own ways of dealing with it and one is to let the pain go through me and not hold onto it. Because THAT is what makes sickness. I witness and I do get sad. But then I let it go because this is how the world has always been, full of pain but also full of grace and beauty. And I want to see both—because somehow they are connected.
Prednisone gave me back appetite and filled me with manic energy that kept me from sleeping. So while my husband and then my care-giving friends slept peacefully in the past few weeks, I was awake for hours, mostly watching Netflix, in my current theme, Science Fiction. Time warps, anomalies, dinosaurs, a warehouse full of magical items, a band of survivors left over from a world wide plague, that all just makes sense at 2 AM. I ate too, late night munchies of all kinds while I watched these crazy shows until I got too exhausted to keep it up. Meanwhile the muscle wasting is too real and more scary than anything I was watching. This might explain the crazy desire to escape. Though I have walked everyday and can circumnavigate Green Lake (three miles) quite easily, the loss of muscle is evident and startling and intense. I have a long road ahead to bring it back. I am now being weaned off of prednisone, going from 100 mg of the stuff to now 15 mg. This is done slowly and we all hope that it does not inspire a flare of Graft vs. Host Disease (GVHD)— or they would probably want me to go back on the stuff.
If I wrote the chapters for a book called My Experience with Acute Lymphomic Leukemia, the shortest would be the Getting Sick chapter. The most dramatic would be the Chemo chapter. The most hopeful would be the Transplant Chapter. Little did I know that all of these would comprise half of the total book. The rest of the adventure would be known as Post Transplant. I have suddenly realized that I am in the middle, not the end of a marathon. I have a set of medications, restrictions, and possible conditions that my body could further endure from the consequences of a new immune system and the effects of chemo. It makes my eyes glaze over and my brain freeze. These are not things that anyone wants to hear about but they will be acutely a part of my life for another year to come. GVHD will be on the possible or real horizon for the foreseeable future. We will only know as I come off the immunosuppressant drugs how it is all working.
But here’s the good news (always barring complications). We will come home for Thanksgiving with the doctor’s blessing on Day 99, then return to Seattle the following week for long term follow-up and final discharge. By the time I have taken my last prednisone, we will be home on island and then faced with the real questions of our lives. Life is uncertain. If we ever thought it wasn’t, we were kidding ourselves. So, given the stark awareness of that irrefutable fact, what do we do with ourselves? That question has been sitting there from the time I became an adult, to be answered daily.
I have had such am amazing life. Now it is time to give back… slowly, keeping my health as a priority and only doing the things that bring joy and healing into the world. Now is the time to be amazed and transcended by the Hubble images and all the scientific news pouring out about the Universe, from quantum physics to the great elegance of the Cosmos. Now is the time to reflect on the face of God, Rumi style. Now is the time to listen closely to whales and elephants and bees and trees and turn what they are telling me into openhearted tangible steps to help. Now is the time to take a walk with friends and marvel at the beauty all around us, and make music and create things with our really cool hands and brains. And now is the time to give thanks, to give, to be with friends and family. I LOVE Thanksgiving. To eat! Yippee. Did you ever notice how good food is? What a gift! To eat! Yay! Life is full of miracles.