Thursday, October 9, 2008

Counts were down and I'm not too happy

I apologize if you are tired of reading about my CMV. I’m getting a little tired of it myself.

Went back to the clinic today to recheck the CMV; the results will be back in a few days. As expected, my counts went down again. They were down so far that, despite being prepared, I was a little shaken up.

My white count was down to 0.7 (normal is 3.8 to 9.2). Not too long ago, I was so proud when I went into the 3’s for the first time in ages. “I’m almost neutropenic!” I said to Dr. Alyea. He explained that low white counts post-chemotherapy – when I was neutropenic in the hospital – are different from when you’re this far out. People walk around with counts like mine and do OK. He did say to restart taking Neupogen shots, or GCSF, to raise my white blood count. I happen to have two boxes in the fridge, left over from the days when my counts crashed six months after my first allo.

My platelets were also down (74), hematocrit was down to 27.3 and hemoglobin was down to 9.6. Actually, I feel fine, and they said I looked fine.

Dr. Alyea said there were two good reasons for the drop: the CMV and the Valcyte used to treat it. Still, he said, he needed to be vigilant, because back in April when my counts took a big dip, graft failure followed. He said not to panic. My latest chimerism, from Oct. 2, was still 90 percent donor – a good place to be.

The plan is to continue the Valcyte and see where the CMV level comes in. If it is still the same, I could switch to one of two antivirals that need to be administered intravenously but which do not lower counts.

A bit of post-traumatic stress kicked in. Low counts bring to mind bad outcomes. My mind immediately went off in this direction: What if I am cured of the leukemia and something else does me in? I know this is a common thought pattern because I’ve seen it on other blogs. I’ve also followed these blogs long enough to see that the complication is taken care of in most cases. I also can think back to a situation where my low counts did not signal anything bad; I was on Valcyte once before for CMV. My counts went down, the CMV went away, I went off the Valcyte and my counts bounced back.

So…I didn’t panic, but I did feel deflated. Big sigh.

When I got home, I quickly put on sweatpants and walked the dog. It was late in the day by then, but still balmy. I bumped into Carol, a good friend from work. We go back 30 years and have been through a lot together. Carol was walking with her niece. They got a caffeinated earful. Carol offered her support and a big hug.

On the way home I passed the fire station and waved to the fire chief, Bill, who was standing in the open bay. He waved back.

A car pulled up alongside me. It was a woman who wanted to know where I had gotten my dog. She said she has a chocolate lab who looks just like mine – small and sleek. She thought they might be from the same litter, but they aren’t. We agreed to introduce them if we bump into each other at the lake.

Life was already gently pulling me along. I came home and gave myself the shot. I watched “Hardball” with Chris Matthews and then, at 8, switched to Comedy Central for last night’s installation of “The Daily Show.” I laughed until my eyes filled with tears.


Susan C said...

How disconcerting! I'm glad at least that the dips have a logical explanation.

PJ said...

Laughter really is the best medicine.

90% donor says it all, I think. The rest is just crap you have to deal with. I'm sorry that you do, but glad that you're doing the right things to keep this in perspective.

Anonymous said...

You've been through so much over the past several years it's no wonder that you can easily slide into a blue mood. It happens to me and I haven't been through all of your medical ups and downs. But what is impressive about you is your ability to be pulled back into the here and now, to be present, and enjoy what's in front of you. And a little political satire can go along way to brightening your mood! Remember that you are in the care of the best professionals in the world and in the meantime, enjoy this beautiful fall weekend.

Wendy S. Harpham, MD said...

Dear Ronnni,
It makes total sense: You know too much and have been through too much not to experience unpleasant emotions when you get news like this, don't you think?

Survivors often feel great pressure to "think positive" when signs or symptoms of potential problems develop.

I think you know I've been in and out of treatment for almost 18 years. I've found that when I'm in a similar situation, instead of trying hard not to worry or to only think positive, I acknowledge the feelings associated with the inescapable knowledge that I might have a new problem.

Then I push those feelings to the periphery by doing the work of Healthy Survivors:
(1) I embrace the uncertainty ("I don't have a problem now, and this might be a false alarm or an easily resolved blip,")
(2) I focus on all the good outcomes that are as possible as the worrisome outcomes,
(3) I review to see if there are any steps I can take to improve my overall health under the circumstances. Oftentimes this involves extra rest to deal with the stress of the uncertainty.
(4) Once I'm doing all I can do, I distract myself from the remaining anxiety by focusing on life-affirming activities and relationships (which, obviously, you're already doing)

If you are still having trouble, you might benefit from spending a little time facing your greatest fears with the support of people who can help you through (so-called detoxifying them). And, if need be, you can talk with your physicians about medications that might help.

(These sorts of issues are discussed in the book, Happiness in a Storm)

Just because you've been through tough times before doesn't mean you don't need extra support now. I've found that the work I did in the past to get through tough times gave me skills to work faster through the negative feelings associated with new problems. I hope that you find the same for you.

Hang in there.
With hope, Wendy

Anonymous said...

Ronni, your ability to deal with all of these highs and lows in such a rational way is inspiring. I've been reading your blogs for a long time, but this is my first comment. I love your writing style. I am looking forward to the one that's titled "Great News, My Counts Are Up!"

Anonymous said...

Hi Ronni,

It's Carol's niece (Ann) stopping by to visit your blog. Thanks for sharing it with me.

It was really nice seeing you Thursday evening - wasn't it a beautiful night? I'm glad you and Maddie turned around and walked with us!

Looking forward to running into you again soon!