This whole experience is like a giant puzzle. You know the type: a fantastic picture of something, maybe a copy of the “Mona Lisa” or a barn in a field of waving grass cut into 5000 different pieces with protrusions and matching dips in them. The worst puzzle I ever saw was one my mother, who loved a good puzzle, gave up on. It was a picture of a white birch forest with snow on the ground. It was almost totally shades of white and vertical lines! Ugh.
Well, our life is like that right now. When we started looking at the Stem Cell Transplant (SCT), we faced a pretty “picture” in which I underwent treatment and came out “healed”. Yup, nice picture: simple, serene, uncomplicated, with a joyful outcome. That was in April of last year. Then we opened the box. What appeared to be a simple puzzle was indeed a multitude of parts awaiting assembly.
We did what every good puzzle person does. We tried to make sense of what we had. We turned all the known pieces face up and began to look for “edge” pieces. You should always start with the frame and work your way inward, right? So we defined the frame. Well, we tried. We were supposed to meet with an MD Anderson doctor on a Monday, so we traveled to Houston on Sunday. On the way, my temp spiked to 102 degrees. We called our local oncologist who suggested ibuprofen and continuing the trip but going to the ER immediately upon arrival. We did, and we found more parts to the puzzle.
I was admitted to the hospital (not in the plans). We were assigned the wrong doctor. That was changed. The Stem Cell Transplant was postponed, and a trial drug was suggested. More pieces? What’s with this puzzle? I seemed to grow before our very eyes. Of course everyone knows that the more pieces a puzzle has the more complicated it becomes. We were hoping for something resembling the childhood puzzles we had at home. This one was becoming a 10,000 piece quagmire.
My new Leukemia doctor, Dr. Tapan Kadia, helped make sense of the mess. He brought in Dr. Issa Khouri who became my transplant doctor. The pair of docs helped define the edges of the puzzle. Bring the CLL, Chronic Lymphocytic Leukemia, under control then transplant. Meanwhile, we were to place ourselves on the waiting list of several subsidized housing organizations for when we would begin the transplant. We did. And we kept changing the need date monthly – for over a year.
The next part of the puzzle was the control issue. We could get into a trial drug program. Easier said than done. The program wasn’t open … yet. “It is opening next month; come in then.” “We tried to call you, the program still isn’t open.” “The program is open now. Come on down.” It was. We did. And we stayed in a hotel for two months! We had been advised not to use the housing programs. Save them for the transplant. We were in the hotel long enough to get “resident status” refunding all sales taxes from our bill! They wouldn’t let us register to vote, however.
Eight months after starting the drug trial, ABT-199, that part of the puzzle was complete. Now the next part began. A firm date was set. Housing dates were changed. One housing volunteer told me to call while we were driving to Houston for the transplant and they would hopefully have something for us when we arrived! Uh, how do you spell “uncertainty”?
We began to plan our packing. We now had experience. We knew what we would need for a four month stay. Plan, assemble, pack, un-pack (I still needed that item at home) buy this, buy that, find boxes that will fit in the car … all of those little strange shaped pieces were flooding our existence.
Meanwhile back at the ranch, things needed to be done around and in the house. Projects that had been put off had to be done. Unexpected problems popped up that had to be addressed. Will this puzzle ever make sense? Will it ever be completed?
Finally another good part of the puzzle was complete. Housing was confirmed – and we were still just over a week away from travel our travel date! Miracles do happen. We are still packing. It is just one week to travel day. The puzzle is beginning to take shape, and it looks sorta like what we thought it would though it is much bigger than we ever imagined. T-23 days and counting.