I went to clinic today and I'm still doing really well. On Friday (after I'd already updated this blog), the nurse practitioner called to inform me that I tested positive for CMV. CMV is a virus that about 50% of the population is already infected with and it lies dormant within the body. It's usually not a problem, but sometimes it can "reactivate" in people with weak immune systems, as it has with me. Since this is something they expect (especially with me, since it also happened when I was getting Campath) they test for it all the time. That way, they catch it early enough to snuff out with drugs before it even gets going. What's an extra four pills a day, eh? The down side is that the new drug -- Valcyte -- can also make you neutropenic (let's hear the collective groan). Today, I found out I'm borderline, so I had to get a shot of Neulasta -- a longer lasting Neupogen -- to stimulate my white cell production and keep me from falling into the no-fruit-and-vegetable zone. And why, may you ask, am I calling it a good day?
Turns out that it all is just a state of mind. The nurse practitioner still says I'm doing really well. Also, my Dad's old doctor stopped in to say "hello." It helped to have him go on and on about how well I'm doing. In particular, he said I may have "set a record" for getting out of the hospital early and that bone marrow transplants "work especially well on CLL." Those are the kind of comments I can take to the bank.
Friday I have my first Chimerism test, which will analyze my bone marrow and tell us how much of me is "me" and how much of me is my donor. We probably won't have the results for several weeks, but it's a milestone nonetheless.
I'll end today's post with my current favorite Zachism: If you ask him where the devil lives, he replies, "in the details" in this why-of-course sort of way. He got it from his G-pa, of course.
--Katie
Comments (3)
Definitely a good day. Somethng about having your dad's doctor say you're doing well makes me feel extra reassured, too.
Hope you're shoveling in extra fruits just in case that mean old neutropenia comes back. Of course that's where the devil lives, dude, that hellfire and brimstone was always hard to take, but the details, those'll drive you crazy. They'll keep you awake at night with the "why me?!" Zach knows. I love that they call it a Chimerism test. So poetic.
love ya,
Posted by Shona Mauro-Sachs | July 15, 2008 3:55 PM
Posted on July 15, 2008 15:55
Dear Katie,
Gald to hear of the report. I was thinking of you all day while Don and I were at the Casino. Dan won and I lost but we came home with more money thatn we went with. Anyway, I had my cell in my purse and kept thinking to call you and let you hear all the slots. Then I didn't know where you would be and so I thought better of it.
Anyway, congrats on all the good numbers and I'll look forward to finding out how much of your donor is in you. Spooky!!!
Talk with you soon.
Love,
Mom
Posted by Mom | July 15, 2008 5:14 PM
Posted on July 15, 2008 17:14
Hooray! So happy to hear you're doing well so well. I am staggering off to bed, so I will have to write more later, but I wanted you to know I have so much love and admiration for you! (and would you really be a chimera? That is so badass!)
Charlene
Posted by Charlene | July 16, 2008 11:32 PM
Posted on July 16, 2008 23:32