I think I will start with the non-medical story of how Steve hustled me out the door when I was still weak and getting sad in the dark cave on a bright sunny Monday last week. Determined to get us both out into the world, he asked me where I wanted to go and I said Rainier. He got a cabin arranged via friends, and Mariya and Will, who had just arrived in Washington, agreed to accompany us. I had never been to Paradise, nor had Mariya or Will. The drive up the mountain started to wake my slumbering senses; the hot day allowed us to drive with all windows open and the sound and scent of the cascading waterfalls, evergreens and ripening berries filled my heart.
By the time we got to the top, my energy was, to be fair, flagged out. Steve positioned the car with a perfect view of the Mountain and while the others romped in the snow, I rested in perfect communion with an elemental presence. Really for me, it was a gift not to move but to literally be LIKE the mountain and just face to face, witnessing the movement around us, the parking lot a half inch lake of water from melting snow, cars coming and going and enjoying the foreign accents of visitors in our national parks. The whistles of marmots mixed with ravensong and helicopters. Wafts of breezes came in through the windows, cool and pregnant with wet earth, snowmelt and emerging wildflowers like the breath of God. The Elemental is a healing place. Eternal, still, expansive. It was everything I needed.
After that, we drove to the cabin in Packwood and settled in. Again, because my energy can drop like a stone, I left the hustle bustle to others and stretched out on the porch recliner watch watching the light shift through the twirling leaves, the cottonwoods spilling their white tufts and all those amazing little gnats and other insects that seem to do nothing but swirl and drift and dance through the breeze. The stillness of my life right now is something I have rarely experienced. I do not multi-task in anyway, but just watch the world. I do this everywhere now, sitting n the car, at the cottage, out the hospital window. It helps me immensely to experience this quiet being at a time when my doing active body is so weak and changed. I can barely open a pill bottle but I can float my consciousness out into the world and witness it. There are so many things happening in the world hidden to humans only because we are all so busy all the time, we don’t notice. Now, that stillness is more common in my life than movement, I am rewarded by this other form of communion with the world. It is something I don’t intend to lose when I get better.
Anyway, determined Elena, who had to work, got off early and doggedly drove herself up in time for dinner. So suddenly we were a quiet woodland setting with the whole fam damily, including 2 dogs and it was, in a word, lovely.
The next day, we played and rested and the girls and Will went home. Steve and I spent another night and went up to Sunrise on the way home for another sheer treat of being above treeline with wildflowers literally springing up through the last of the snowmelt. I even felt good enough for a short walk in the sun. It shifted my awareness of my own health to be in the presence of such well-being and life. Just a little different than the SCCA routine.
And so, I carried that gifted energy into my last scheduled “Hyper-CVAD” chemotherapy (small frequent doses of highly potent chemo; CVAD is the acronym for the drugs used in Round A). “Herman” the IV pole holds only one bag at the moment, Cytarabine. When I have had 4 doses of Cyterabine and when I have been “rescued” (meaning the levels have dropped) from the Methotrexate, the 24 hour drip I had at the beginning, I can go home, hopefully on Tuesday. This hospital stay has been okay so far, busy. I have met with both the physical and occupational therapists to talk strategy about building strength back. All that weight I lost (now up to 117 lbs) was a lot of muscle mass. So, I need to build back strength in my arms and legs. The CMV counts prompted the visits of the Infectious Disease doctors. CMV is something many of us have but it lays latent in the body, suppressed by the immune system. But suppress that hard working system and suddenly CMV is on the prowl and growing in the body, and potentially wreaking havoc. So we are working hard to get the levels down.
And that dry little update is all anyone needs to hear about the hospital. It is that last scheduled chemo time before the induction chemo, which I believe can be done out- patient. It’s hard to believe I have been here for 6 rounds (7 counting the emergency visit where they tried so hard to figure out what kind of infection I had, which we think now was the CMV). By way of cheering me up, one nurse remarked “you’ve done most of the heavy lifting now.” It did not exactly cheer me, but there is comfort in knowing that some of the hardest parts of the trail are behind you. I hope.
It’s the transplant now that looms up with so many unknowns. What we do know is that we have chosen the haploid or haplo route instead of cord blood. The reasons were subtle and there is not much research to go on which one is better. Mariya will most likely be the donor, unless for some reason, her health assessment uncovers something unexpected. Haploid donors—those that are not a perfect match but rather a half match, a couple of years ago caused horrific issues with graft versus host disease, but the recent studies out of Fred Hutchison Research Center have found a way around that (simple; more chemo). Anyway, now it seems, they can do the transplant all out-patient, whereas it used to require long isolated hospital stays. That is, unless, you run in “roadblocks”. And that list is long and scary. So we won’t go there.
What I do know is this, and I’ll just give it straight and dry, like I have been getting it: The Induction process for both Mariya and me begins July 30. We will both be checked for health in every possible way. She will have to take the same shots in the stomach that I took to boost her own white blood cells for a few days. I will get to have induction chemo and tests of every part of my body, plus another bone marrow biopsy and many more spinal taps.
The transplant will likely be on August 20. For Mariya, that means a few days before she will have her stem cells harvested from her blood over couple of hours for 1-2 days. They will be replaced by her body over a short time. For me (and Steve), this begins the “100 days with a 30 minute leash to the hospital”. The month after will likely be hard, lots and lots of medications, visits to SCCA or hospital, and the potential for many unpleasant reactions. I will be very vulnerable to infection. Miraculously, this can be done out-patient—unless there are complications. That means the cottage instead of the hospital. Then, as Mariya’s immune system engrafts to me, and starts to work, I will slowly get better. I will have her immune system and her blood type. Maybe I will even be gluten-sensitive, like her.
With any luck, health will find its way back to me and hair will grow back and I will learn to eat again. My intent is to be back on island well enough to go for a walk and ready to enjoy Thanksgiving dinner.
I will be praying for the a successful transplant; that it goes well, and that my body reacts well and engrafts quickly to Mariya’s stem cells. I will pray for no infections and no complications and quick healing. I invite you to pray with me. Until then, I just need to stay as strong as possible.