Tuesday, November 30, 2010

The Roids Are Back

I got juiced with steroids today and it seems I'll be up much of the night. Counts are good. White count at 4.2, which is really good for me (3.0 is normal). Hematocrit is at 34, which is also very good for me (normal being 40+). I'm going to a shot of velcade and steroids every week until we head out for MD Anderson for my infusion of additional white cells from Mike. This weekly regime is at my request (god Rifkin must be tired of dealing with this type A personality). I asked why we were on an every other week regime when I still had residual myeloma in me. He immediately capitulated to a once a week regime. When I was taking depositions I never had such success with my interrogations!

Everyone is doing well. Nothing new to report. The shingles have calmed down although I still have the nerve pain in the rear end. Oh, the indignity of it all. These past months have been good in that they have allowed me time to discover that I, in fact, can live with the many limitations this cancer and its treatment have bestowed on me. While I know I have been dealing with them constantly for the past five years, it's mostly felt like I've been moving from one crisis to another. These last months are a relief in that I am not in nor anticipating any impending major assault. Learning to live with the many issues I'm left with (mainly as side effects from the chemo, like loss of smell, taste, neuropathies, daily indigestion, fatigue, etc.) it is always a challenge, but as Susan regularly reminds me, "you're alive." And to that I say, "you're right." And that's that. I'm alive, I'm trying to stay active, I always so grateful for everyone's support. The gratitude for my brother Mike's unselfish act of being my donor only deepens with time. He's had to make multiple trips to Houston, administer shots at home, endure bone pain and for no personal reward. What a brother! With that kind of support how could I not be happy. A good frame of mind for the upcoming holidays.

I wish for you all the same peace and happiness I feel every day.

Thursday, November 11, 2010

Shingles Belong On A Roof

Ever since I was diagnosed I've taken medication (acyclovir) to prevent shingles. Shingles arises from the same virus that causes chicken pox and shares many of its same awful features, including the blistery itchy rash. You only get shingles if you've had chicken pox. The virus then goes dormant in your nerve roots. It can "wake up" in older and immune suppressed people and the virus shows itself as shingles. I've been on automatic refill for this drug at my Target pharmacy. Well, they didn't fill it last month and I didn't notice that I was out, given my 12 or so drugs I take daily. Three weeks of no protection and the opportunistic virus rears its head and bites me in the ass. Unfortunately I have the rash and the significant nerve pain in the most inconvenient of places--my left buttocks! Are you kidding me? I want to scream, "what next" but I'm afraid of what could be next. I'm constantly reminded of John Lennon screaming, "I've got blisters on my fingers," on the Abbey Road albumn. My refrain: I've got blisters on my ass.

Although this can be a very painful, extended infection I have responded well to the high doses of valacyclovir I've been taking since Monday. Keeping the fingers crossed.

Mike has completed his first visit to MD Anderson in preparation for the donor leukocyte infusion in January. Since he is the first one on this protocol he claims he spent one of the days "getting them organized." He says that after his next visit he will have them in shape to handle my visit. He is a Type AAA personality and now I have his blood running in me.