Monday Medical Update 01-19-09

MLK Day! A day to be out of school or off work and perform some type of service. I am sad to say that I was not able to perform much in the way of service. Over the weekend I was supposed to have made some photos of Fiesta and other HLC ware for the next issue of THE DISH. Instead I felt so bad all I did was stay in bed most of the weekend. I wasn't able to let my friends from Birmingham, Indiana, and Connecticut come by yesterday because my white count was so low. That was most depressing.

So I got up this morning to make some of the photos. I was doing pretty well even with the aching from my large bones, when I started bleeding from my nose and mouth. Not a good thing! I went on over to my doc's around noon, rather than waiting until my 3:00 appointment. Sure enough, my platelets were down to 5. I don't think those hateful Neumega shots did a thing to help my platelet production and hope I don't have to suffer those again! Doc immediately set me up for a platelet transfusion, but the blood bank wouldn't be able to release them for over an hour.

In the meanwhile, there was this whole thing about starting the third Dacogen treatment today. Besides the Dacogen I first have to get Kytril & Decodren (anti-nausea and steroid) before hand. All this is IV and takes about an hour and 15 minutes after the pharmacy gets the drugs ready.

BUT WAIT. The Neupogen shots (those things that cause the awful bone ache) are supposed to have boosted my white count. Last Thursday my neutrophils (the part of the white count in which we are most interested) were 0.3. Today, after having these shots mostly daily for over a week, my count is back down to 0.0!!! How did this happen? I've never had the count go down like that unless I've had treatments and I find it rather scary. We had some considerable discussion about whether to start the Dacogen. Optimally my count would have been at least 0.5. But if we wait too long (and I'm already a week over) the nasty genetically broken bone marrow cells will reproduce more rapidly than the good bone marrow cells. What to do? What to do?

I decided to go ahead and start the Dacogen again. So far (with only two notable hospital stay exceptions) I've been able to cope very well with the no white count since I began chemo treatments last June. I know what to do. Don't go anywhere. Don't see people. Live in a bubble. Sigh. OK. I can do that for another month. We knew it would be coming anyway. The hope here is that we don't kill off too many of the good bone marrow cells in trying to get rid of the defective ones. Please say prayers, send good karma, and think healing thoughts for me this next month. I need every single one of those and whatever other positive waves any of you might feel like projecting to the universe.

Oh, and another thing. Because of all the red blood transfusions I'm building up a toxic level of iron. There is a medication called Exjade to take for that. A pill, (or several pills depending on the dose you need), dissolved in liquid once a day and drunk on an empty stomach. The doc doesn't want me to take it while I'm on Dacogen, so I may start on it next week.

Tomorrow my Dacogen treatment is scheduled for mid-afternoon so that I can enjoy watching the inauguration. You remember. The one I was officially invited to attend and instead will be tucked up seeing it all from the comfort of my home on our big screen TV.