First, I apologize for a 2 week delay in up-dates. Neva has a new job that is extremely demanding; working 10-12 hour days, including much traveling, as well as a family to tend to. So for the moment I will attempt to bring everything up to date. Wendy W will also be helping w/ electronic communication as I decline into temporary Chemo ka ka-land. We may even ask for more internet savvy help as we proceed forward. The biggest surprise, aside from reaching Remission - YAY !...is that much to my own chagrin I've been forced to surrender and now own a Facebook page of my very own (!!). Which BTW I totally don't know how to use yet. Please bear with me on this one...
As for the up-date: I was home from the hospital for the planned 2 week break in chemo and re-admitted yesterday afternoon for round #2. Now in "Remission" with no Leukemia detected this doesn't mean we can stop here. Due to the aggressive nature of my Leukemia I will need to continue with treatment. My Dr's appt last Tues resulted in a possible 2nd option on the table - "DLI" (Donor Lymphocyte Infusion). Typically referred to as a "Rescue Therapy" it is far less toxic, less abrasive, less intense than a transplant, but not without its own risk's. This idea initially sounded very attractive. However in my case it will need to include additional "maintenance" medication support treatment which is actually a Chemotherapy drug (with chemo side effects). We don't know yet how long I would need to take it. Quite honestly folks this could be the deal breaker for me. I do not wish to cross that line of Conquering Cancer vs. now continually battling cancer or lingering with it. Apparently this DLI also has a rather short and very unimpressive survival rate of 2-3 years out. Not at all encouraging, especially after reading the research papers.
A new element in the Transplant equation is the realization that a second fully toxic completely myeloablative transplant may not even be an option anymore. Simply because my bone marrow may not have the ability to re-populate itself...at all. That being said....what in the past I would have never considered - a less toxic "mini-transplant" - is exactly what we are seriously considering now. There's been much medical advancement with mini-transplants, as well as a higher degree of long-term success. Or so we've been told. Once I complete this 2nd chemo round & am discharged we will then meet with the Transplant team where all of the above will be on the table to be discussed. And there is much to discuss.
As mentioned above I was re-admitted yesterday afternoon to UW Medical Center. And like clock work they started the chemo almost immediately. Currently I feel surprisingly fine, hence it is I who is submitting this post. I expect I'll start feeling the chemo effects sometime the latter part of next week. I am currently in room 8064 and have a fantastic view of not only snowcapped Mt. Rainier in all her glory, but of Portage Cove & Seattle Yacht Club's dingy sailboat races. How totally appropriate is THAT !!
There have been a lot of requests to change the format reporting my blood levels because the numbers on their own have little significance. I know a lot of you remember seeing them in a visual chart format 7 years ago which was far more impressionable. It is my hope to figure out a way to repeat that format or something similar before we head into transplant. Please bare with me/us.
Again, I'm truly sorry for the delay. Please keep checking this blog. And the Facebook thang too. I know this is for the long-haul but please don't give up on me yet ! Also look for a Go Fund Me page to come soon (the reason for the new FB page). And please feel free to swing by in person (call 1st ??), to help ward off endless cabin fever with promises of uber-dirty martini's & alarming my med team by playing Frisbee w/ me down the hallways. Bring your guitar, or whatever entertaining folly you've got going on. Or simply sit by me while I doze off for 10 min. Foot messages and totally inappropriate & politically incorrect jokes may also be welcomed. But most welcomed of all: your smiling face. = )
To Life !
Kristina -
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