Those of you who grew up with the Big Fella, Mr. Pete and Fuzz will understand the potential repercussions associated with releasing the Big Fella's cells in me. Although I was told that I could be on anti rejection meds for years, I'm off them after six months. The anti rejection meds are now on the shelf. We'll have to be even more vigilant for signs of GVHD (graph vs. host disease). Although I think the fact that I haven't had any makes it less likely, I'm told that's not the case. Doesn't make sense to me.
My counts are very good. White count 3.2 (in normal range); hemoglobin 11.9 (normal is above 14); and hematocrit 35 (normal is above 40). I don't think my numbers have been that good since I was dianosed.
I'll be starting another chemo drug, velcade, in two weeks, in an effort to bring the myeloma levels down further, or at least to keep them in check.
The vaccine trial I've discussed in previous posts is a randomized trial, meaning about 50% will receive the vaccine and 50% will not. They told me when I was in Houston a couple of weeks ago that I was randomized to be in the control group, i.e., I won't receive the vaccine. I will, however, receive another infusion of Mike's cells in early January. This is called a Donor Leucocyte Infusion (DLI). If I was participating in the vaccine trial I would be getting the vaccine along with the DLI. Mike still has to go to MDA three times between November and January to receive growth hormone shots (don't tell Roger Clemens). He also has to give himself six of these shots during that same time period. The DLI has been known to bring people into remission with other blood cancers, such as leukemia. I'm unsure of its success in myeloma patients. If I don't respond to the DLI within a few months, then I will be eligible to receive the vaccine. So worst case, I'll have to wait an extra 4 or 5 months to get the vaccine. Best case is I won't need it if the DLI brings me into remission.
I really don't know how to describe my feelings about achieving stability after 5 1/2 years of rigorous treatment. Disbelief? Fear that it will all come crashing in? Hope? Bewilderment? Excitement? Caution not to get too hopeful and then be disappointed like so many other times? All of the above and more. I have faced my mortality and prepared myself for the end, endured some very painful episodes, and learned to live with my messed up body--my feet are numb, I have no ass, my hair keeps falling out, I can't hear and I live on imodium (anti diarrhea med). My mind has taken me to some very dark places. I don't feel that I even know how to deal with the possibility of a life without constant treatment. Could I really be one of the lucky ones? But I am one already. That's just a glimpse into my reaction to six months of stabile disease. Perhaps Jerry Garcia said it best, "what a long strange trip it's been."*
*For all you deadheads and aging hippies, the line, "what a long strange trip it's been" came from the Grateful Dead's song "Truckin", and was actually written by Robert Hunter, a friend of Garcia's but not an official member of the band. The line is also the title of the Dead's compilation album released in 1977. Which reminds me maybe I need to once again live by the motto of that era and just keep on truckin.
Dan a/k/a The Fuzz (circa 1970 when I had hair)
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8 comments:
Your second to the last paragraph was very revealing. I gleaned a lot of knowledge about your feelings that you have kept to yourself. You have fought a great battle and I know you are going to win because you are a mighty warrior. I love you,Mom
Oh boy, your mom's post made me cry. Anyhoo, I know a man who did not get GVHD from his allo(sis was his donor). He also did have some MM left and he was treated with Revlimid for awhile and given either 1 or 2 DLI's(I can't recall)
and has been doing great ever since. He's been off Rev. for a long time now and he does not update his caring bridge site much but last I heard, he was still fine and doing the world traveller thing. I also know of several people who took awhile after an allo to go into remission. Your story definitely shows what a roller coaster MM is. Everyday is a combination of white-knuckling it and/or throwing your hands up and letting go.
Does this mean that from now on Mike will now have an "*" after his name?? He will be "Bigger, Stronger, Faster"!
Arlene,
I think the asterik goes behind my name. Any achievements of mine are now suspect as I have been permanently infused with the Big Fella. Is this where the term blood doping came to be? Nah, Mike's not a dope. If I perform astounding feats no doubt they will ban the Big Fella from use by anyone else. I can see it all now---The Big Fella scandal of 2010.
Dear Dan,
After reading this blog, I thought to myself: 'soon he will be able to come and visit us in Paris...' Bises, Sigun.
How grateful I am . . . you have taught me so much.
Love you,
P
Its so wonderful to hear good news from other MM folks and yours is well deserved Dan! Well done to you and the "team" that I know you have supporting you and making it all go well.
On the dark moments, I call it "guerilla warfare". When those bad thoughts creep in, I grab my metaphorical oozie, go in, confront them, shoot the hell out of them and get out as quick as I can. Until the next time... but it keeps them down to a dull roar. No point in winning one war to be trapped by that one. Enjoy, enjoy, enjoy, as much as you can.
What good news that you have posted and I am sure the rest of your blog0sphere is as delighted as I am to hear it... and join me in intending continued success with the Big Fella's cells....
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