100 day results - a mixed bag

I saw Dr. McGuirk this morning at the clinic and he was bursting with the news that my chimerism was 100% donor. "Well 92.8% but that's 100% because there is a 1.2% margin of error." The entire clinic was dancing. Even the cleaning ladies were hugging me (a sure sign I've been there too long.)

It was a celebratory morning. Lots of privileges like road trips and hotels and staying with other people as long as they aren't sick. Even said I could live alone. Dad could work in his shop. No gardening, but movement!

He went on to say he had asked for the determination of 5q- and didn't have those results yet but to call him this afternoon and he would have them. So Mom and I went to the Starbucks drive-through for what has become the traditional celebratory drink (tall soy latte, hers with carmel) and to the grocery store. For the first time I went into the grocery store without a mask and could carry my coffee with me...a lot of freedom.

The phone rang as we were checking out and it was the clinic. Dr. McGuirk told me that there was still 14% 5q- cells. "Stop the steroids, start tapering the immune suppressant. We'll get it," he said with confidence.

So over the rest of the afternoon I've gone from tears to cheers to fears and back again. Here is (with apologies to Paul Harvey) the rest of the story.

The actual explanation is 14% of the .8% Cathi cells remaining in my bone marrow have 5q-. Dad has worked that out to 99.9112% (or something) healthy cells which is a nice number. ("5q-" is the bone marrow disorder I had for years before it converted to Leukemia which it wasn't supposed to do, but life has a way of happening.)

The plan is to immediately begin tapering off the immune suppressant drugs to allow Walt's cells the freedom to overtake the last .8% of Cathi cells left. On the up side, to taper off the immune suppressants I have to stop all the steroids. So muscle building here I come!

We still have options. and options have been good to us this time around. One option in the transplant protocol this time around was to taper the immune suppressants very early in the game (like day 42) to incite graft vs. host disease. We didn't have to do that because I developed a good case of graft vs. host right from the transplant. A good case of graft vs. host is a good omen for longer term survival. So we have that in the can. A good case of graft vs host will hammer the host cells when the immune suppressants go away.

We can get a leukocyte booster from Walt--essentially hit him up for some T-cells.

So this will be a watch and wait process with regular checkpoints. We're on safari looking for those 5q- cells floating around. We're energizing Walt's donor cells to knock 'em out. And we're maintaining a healthy body for the action to take place.

One of the things McGuirk said to do today was go up and down the stairs 5x without stopping. I'll be sure and let you know if that happens! holy cow!

~Cathi