Rollarcoaster

Long time. And a rollercoaster of game plans, sudden switches, constantly changing theories. A brutal reminder I am NOT in control of my own body nor of what the physicians have in mind to rescue/recover my marrow. We are breaking new ground and this whole thing is simply a messy moving target.
Quickly and currently; I was admitted back into UW Medical Center for a painful, swollen, and very warm-to-the-touch left knee yesterday. For fear of what could potentially be a dangerous infection. This, along with significant joint-pain in every body joint which has simply escalated as the weeks pass. Enough pain to wake me during the night when simply rolling over in bed. Due specifically to my knee, my SCCA physicians were finally concerned enough to admit me into the hospital to have it drained & the fluid cultured. Thank god there was no infection found. But during the reviewing of timing vs. symptoms it now seems to directly correlate to 2 separate heavy-hitting (and expensive) medications that I had been prescribed. Needless to say both have now been either stopped or adjusted, and I just walked back in my door at home, no longer chained to an IV pole in a hospital.  YAY !!!
Now to back-track a bit: at last post I was given the rather distressing news that they were indeed moving me towards transplant, were/had narrowed down to a single new donor, & that I was now lined-up for a MINI-Transplant, not the one we had previously discussed. A daunting and surprising move that at that moment kinda made sense but scared the hell out of me. Having no bone marrow is a rather daring, vulnerable, and dangerous way to live. And my marrow certainly wasn't returning with any speed nor significance.
However within 38 hours all gears switched....yet again ! Now onto game plan "G" (??). Last Wednesday they decided to cancel the transplant ("not strong enough" for one...), try a synthetic growth hormone - neupogen injections, which in theory encourages neutrophil & white blood cell production. To be followed-up with a second DLI injection 6 weeks from the first (Oct 17th).
I had 2 neupogen injection, one of which did indeed give an uber-nano-bump to the WBC & neutrophils. However the 2nd injection didn't seem to effect anything. I'm not thrilled with synthetics, nor growth hormone, so I am glad they decided to stop this treatment for the time being. Moving forward, and barring any significant GvHD symptoms, we will simply rely on the wait & see method, the second DLI late November/early December, and keep fingers crossed the marrow will return......  And' I don't get sick, be exposed to illness, or have any other complications.
We are currently using the Caregiving Calendar, however only on Mon/Wed/Fri. And probably only 1 weekend-day each weekend. Those on Tues & Thurs will be "on call" for any accompaniment to blood transfusions as needed. I will contact my Weekend Warriors directly.
Thank you ever so much for rockin and rollin' with me thru all this confounding, utterly confusing BS. Honestly I haven't written anything sooner simply because I can't keep up with the changes.  Nor do I know what in the hell to say anymore.  I am not in control of my body.
( tho I wish to bloody hell I was. 'nuff said ! )
K -
P.S. made an appt with Ortho for my knee. What do cancer folks know about old ski injuries pumped-up and aggravated by prophylactic power-antibiotics, right....