Monday, December 8, 2008

Trying to stay up in a downturn

I expected my counts to be low at today’s visit, but I was unpleasantly surprised at how low they really were. After being great two weeks ago, all of my counts are below normal because of my third bout with CMV and because of the drug Valcyte, which is used to treat the virus but which also suppresses bone marrow production. For more details about the "stupid virus," see last week's post about it.

My platelets were 27, white blood count 1.4 and hematocrit 25.2. The transfusion from last week helped somewhat, but not too much. The CMV results take longer than the rest; after last week’s test, the virus was actually gone. When I get the results of today’s test, which may come in tomorrow, we will hope that it is still negative. If so, I can begin tapering the Valcyte. The question is whether anything can be done to stop this cycle from repeating itself. I am totally stopping my last immune suppressant, Prograf, which should help. We’ll see if they come up with anything else.

I need to return Thursday for blood work, a probable bone marrow biopsy and, if needed, transfusions. As soon as I got home today, I gave myself a shot of Neupogen to boost my white count. I’ll give myself another shot tomorrow and Wednesday.

I’m just about six months out, which is where I was when my counts crashed in April, signaling the graft failure which led to my third transplant (the second if you don’t count my autologous transplant in 2003). Naturally I am jittery about the same thing happening again. But my low counts correlate with the CMV and Valcyte, and Melissa said to try not to worry.

Today I also saw my wonderful social worker, Mary Lou Hackett. Of course without revealing their identity, she often mentions long-term survivors who’ve been there, done that. She has said that in the first year after transplant, many people experience ups and downs with their counts.

Like a little kid, I asked her today if she could tell me the story about the people whose counts go up and down. It’s reassuring to hear repeatedly that I’m not the only one it happens to.

I told her my worries about the six-month mark, and asked her what she thought about my concerns.

“What do you think?” she asked.

“Well,” I said, looking out the window at the busy Boston street. “If a bus hit me on the corner six months ago, it doesn’t mean that another bus will hit me in the same spot today or any other day.”

She smiled.

I smiled. I thought that was a pretty good answer. Now I just have to believe in it.

9 comments:

Patty said...

Hi Ronni - I am sorry to hear about that stupid virus. I am thinking about you.

susiegb said...

Good luck with the test results tomorrow Ronnie ... and I hope there are no more buses lurking at corners near you - ever!!

:)

Susan C said...

GRRR!!! So sorry to hear about the virus and the plunging counts.

PJ said...

First, great title. I've also told the "bus" story, with varying degrees of confidence.

What will stop this annoying cycle is a little more time, ending the Prograf, and those little buggers learning who's boss. Believe it.

Mikha'el said...

Along the lines of your title of this post, a downturn allows space for an upturn to happen. Hang in there and be stong

Ann said...

Valcyte is tanking my numbers, too. You're never alone in these situations and each time I get my CBC I remind myself that you're going through the same thing. Chin up. You'll conquer CMV on your way to conquering the world. Believe it, I do.

Rooster said...

Our counts go down our counts go up, it is part of the course. Keep your head up & watch out for the damn bus, take the train!

Sandi

Korby said...

Ronni,
You are going to be fine! I feel it for sure! May I be your first partner when you get back to tennis or will I have to fight Donna for that honor? Good luck Thursday. I know you have those bone marrow biopsys--who wouldn't?

rc said...

while you're counting, how about counting your family, the people you've touched with your blog and the people who really care about you..whether it's blood cells or 401K returns, when the counts get you down, try counting something else...rc