A much long overdue update. As usual, of course. Though not a lot has transpired worthy of a post honestly. I am now 3 weeks into my 2nd DLI (Donor Lymphocyte Infusion) of Bruce's killer T-cells. As with a Transplant of bone marrow or stem cells (and dumbing it down considerably)...if the transplant does not fail shortly thereafter there is then the reasonably high likelihood the Leukemia has been eradicated by the new stem cells and "all one must deal with then" is the countless and horrid side-effects of the transplant itself; GvHD, all the endless medications, the recovery, etc... NOT a small manageable feat to say the least !! However with a DLI it is far more ambiguous. There is no real way to say it is truly working or not working against the Leukemia effect. It is largely a tedious wait & see game as blood levels return to normal, start producing on their own...or whether the leukemia will return & present itself again. Honestly both are truly a crap shot but DLI is just ever a little bit more so...
Currently I am doing remarkably well for no to little bone marrow production per se. I have been straddling that Neutropenic level of 0.50 (also known as 500) and just above it, and am still dependent on my daytime-vampire blood transfusions (now every 7 to 12 days). In this winter of horrible Flu & Measles outbreaks I have been blessed FAR beyond just sheer Luck....and I KNOW it !! Largely no doubt due to all the criminally expensive prophylactic med's I'm taking. And considering how neutropenic and vulnerable I still am ! My Neutrophils have once been as high as 0.73, but I then slip back down again zig-zagging back & forth at that neutropenia level. However I've managed to stay just above the 0.50 point for a few of weeks now. So Yes! there is indeed a slow steady movement forward... Improvement. Yay !
We are presently in a 6-8 week waiting period post this most recent DLI. We are waiting to see if and how much Graft vs Host Disease (GvHD) will present. And how we will treat the GvHD considering my already insufficient immune system. On the other side of the coin, what if GvHD does not present ? Does this mean the DLI against the Leukemia is not working ??? As my Doc say's: "be very very careful what you wish for"....
Two recent devoplements:
~ You all know just how much sailing is a part of my life & how I am typically very involved in the Leukemia & Lymphoma Society's "Seattle Leukemia Cup Regatta". This year they have chosen ME (!!) to represent them as one of their 2 "Honored Skippers"!! It is indeed an honor to stand for Leukemia Patients everywhere & represent Seattle's effort to fight the cause ! I am very much humbled.There will be press junket & informational materials available publically so pls keep an eye out for my smiling uber-short haired face = )
http://www.leukemiacup.org/wa/localchapter/patient
~ At the same time, the LLS Grant I was awarded in August which has been paying my Cobra medical insurance will run out mid-March. This will bring much added stress as we struggle to figure out ways to financially cover this expense while still on Disability. It is Imperative that my criminally expensive medical insurance not lapse so I may continue treatment & then crucial monitoring. Unfortunately I will need to stay with the very same insurance as it covers everything transplant-related. We are considering the potential of a "Go Fund Me" page or the like, but everytime I read the seemingly much more dire and needier campaigns on these pages my stomach just simply turns. If anyone has any other presentable idea's or connections please don't hesitate to speak up.
I so hope that everyone's Valentines Day brought sun, warmth, joy, and perhaps the tender Love we all deserve - whether attached to another or not. Mind did = ) Here's endless Love to all my peeps, to my Village.
To Life. Live it Boldly !
K -
