It’s funny how things come together. You spend months or years anticipating (with varying levels of apprehension) something like a bone marrow transplant: for a while it simply seems to hang there around the corner. And then a date gets firmed up and suddenly a couple of weeks are all that separate you from the big day. Now there are dozens of things to do and they are all about the transplant.
If you are lucky, like me, you will have the strong support and organizational abilities of a spouse and family. Things are planned down to the last detail, like a military operation. Paperwork, logistics, supply lines, treatment schedules, transportation, all seem to take on their own lives. Sometimes you are a bemused spectator of all the moving parts. In my case, Serena was clearly in charge and she was taking no chances.
If the transplant center of your choice is hundreds or thousands of miles away from home, you are essentially moving house for a few months, with all that it implies. It is best if you are prepared for a four month stay, even if all goes well.
For me, leaving our home in Sedona was a major wrench, starting with handing over custody of EGCG, my faithful Australian Shepherd, to her dog-sitter for the duration. I know she will be well cared for – but at the back of my mind, I was keeping my fingers crossed and hoping to see my faithful hiking companion again … soon. It is, of course, in the eternal fitness of things that we would have to leave Sedona in March, when sunnier skies and warm days come to the mountains of Northern Arizona. Our hope was that we would find a friendly reception in chilly Minneapolis.
In that we were not disappointed. The cord blood transplant program at Minnesota is well organized. Patient housing is provided in an apartment building two blocks from the transplant center. The living arrangements are entirely functional and relatively stress-free. In two days we were all settled in and ready for the rigors of the medical center. Everyone we met, from clinic personnel to social workers, was friendly, Minnesota nice.
Three days after we arrived in Minneapolis, we were joined by our daughter and son-in-law. We were glad to see them. Now they could run around and help us set up house, not an unfair turnaround from a few years ago when we did the same as our daughter first went to college.
The first week is all about tests and consultations. Starting with blood draws at the BMT clinic, Serena and I were constantly running from one diagnostic testing location to another. In between, there were consultations on various medical aspects of the transplant process. There were x-rays, CT scans, an EKG, a MUGA scan, a bone marrow biopsy (how could I forget that?), lung and kidney function tests: a long list. There were patient education classes and many informational consultations. We learned about a tunneled double lumen left atrial Hickman catheter and a great variety of other quasi-medical mysteries. We learned that each cord blood transplant unit is also a full intensive care unit and with rare exceptions, just about all the services a patient needs will be performed in the unit.
At the end of the week, we had a recap consultation with a transplant physician who went through the test results with Serena and me. While there is no way of telling ahead of time, the results were a bit of anti-climax: all my systems were perfectly normal, organs were functioning in the pink of health and the CLL itself had receded to such a level that it could not be detected with four-color flow cytometry on the bone-marrow aspirate. But since I still had a few palpable lymph nodes in the 1.5 cm range, my remission was considered partial.
The consulting physician was happy to report that there was no medical reason I should not have a cord blood stem cell transplant. I was an ideal candidate with no identifiable co-morbidities in pretty close to complete remission from my cancer.
After years of careful treatment planning, here we were. No reason not to have a transplant. And one big reason to go ahead.
So now we wait for the first available unit in the cord blood transplant wing at the Fairview Hospital, University of Minnesota Medical Center. As you might expect, room at the inn is a scarce resource and a delay of couple days for a vacancy is not unexpected.