Tuesday, December 13, 2011

Change of Plans ... Again

Dr. Jagasia told me today that I keep throwing curve balls to the transplant team. Between leukemia cells in the spinal fluid, minor heart attacks, and now inexplicable spots—which look like dry skin and they call a rash—on my legs, nothing is simply smooth.

So they're throwing me curve balls back.

It turns out we can't wait until after the New Year to begin the transplant preparation. They want to give me "cerebro-spinal" radiation. That would be my brain and spine. That requires ten doses, done once per day, only on weekdays that are not holidays, and all ten doses have to be done before they start the chemo. So the new plan is 10 doses of cerebro-spinal radiation, then three total body irraditions, then chemo for six or seven days, then a one day break to begin immunosuppressive drugs to prevent rejection, then the transplant.

The whole Christmas break is too long to wait to begin that more than three week process. We don't know yet, however, whether radiology will start next week or the week after Christmas.

First, though, I have to have another marrow biopsy, so I suspect that will have to happen this coming week. And, say the doctor and the nurse practitioner, while they're poking a hole in my hip for the marrow, they might as well poke one more in my spine and get a third clean spinal fluid check.

I did at least ask her to schedule the spinal tap—they call it a "lumbar puncture"—for the afternoon. I seem to be a lot less nervous at afternoon spinal taps.

This will be the sixth one.

Assuming that my marrow and spinal fluid are still leukemia free, and assuming that my heart is no worse than it was last month after the heart attack, they will begin zapping me the week after Christmas at the latest. There's only three workdays that week, so I would only get three doses. Still, that would allow the chemo to start around the January 16th.

I don't think Dr. Jagasia even wants to wait that long. He doesn't trust my version of leukemia not to come back, and he already doesn't like it that it's been two months since my last chemo dose, nor that the last chemo dose was only one medicine. He wants to get the stem cells in there before there's a potential for relapse.

So that was my news for today. Ten doses of direct brain radiation. Nice. I've heard what that's like from others who have had it, though the people I know who've had it got more like 20 doses. At least in this case, I'm getting something in a smaller dose!

I'm rested. My blood counts are up a bit. I don't hurt, I'm not having headaches, and I feel great. I have a lot of artificial courage for this upcoming transplant, as well as having learned some more realistic trust in God over the last five months. Nonetheless, listening to all the news today was a little tiring, as was the pulmonary function test I took. Those who've had a lung test like that know how tiring it can be.

So I took the kids out to IHOP after the last appointment. That was fun.

I got an email later telling me that the nurse practitioner had talked to the radiologist and a schedule has been made. I'll be told about it in the morning. So I guess I'll have more news for you then!


  1. I love you Papa Shammah and I'm praying for you...

  2. Marlene and I just read your blog and are speechless....it sounds brutal....the thought going through my head right now is the line in that song"one day at a time sweet Jesus....that's all I'm asking of you".

    We are praying for you even now. And will keep knocking on heavens door. We love you.