Day 77. Two Steps Forward. One Step Back.

There have been several ways that I have seen steps forward. Each day, I have seen micro amounts of increase in energy. But it's an increase! One really good nap seems to work most days now. Some days still require two, but not all. Stretching sometimes helps my headaches. Sometimes it doesn't. But it always feels good.

Monday, however, was a step back day. It started with a day long headache, manageable but constant. It ended with it moving to unmanageable and throwing up all night long. I should have gone to the EC, but I just refuse to go back to the hospital and ruin my chances of going home. So we just toughed it out. I had an early morning appointment already scheduled, so I was trying to hold out. Paul toughed it out with me. We only got a little bit of sleep. By morning, I threw up one last time and that seemed to be it. By then, I had depleted my fluids, so when my lab work came back it was evident how much I had lost. They told me that if I threw up even one more time that I'd have to go to the EC. Fortunately, I didn't.

I did, however, fall asleep at every turn! As the appointment was very early, we were taking a different route that Renee hadn't driven. I fell asleep as navigator and we missed our turn. Oops. I fell asleep sleep sitting straight up in my chair in the waiting room, and Renee sweetly put her arm around me and laid my head on her shoulder. This happened several times. I think I fell asleep mid-sentence a few times as well. I fell asleep in the truck on the way home, but she knew the way. I took a nap once I got home and slept most of the afternoon. When I woke up, Paul was already home. I spent most of the evening dozing on his shoulder followed by a good night's sleep. I guess my body was really tired and needed to catch up on that rest. Is it nap time yet?

I learned from the doctor yesterday that these headaches are going to continue as long as I am on these meds, and I am going to be on these meds for a while. The anti-fungal/bacterial/viral meds suppress my immune system so it doesn't take over the new guys. The Tacro, which causes the headaches, suppresses the GVHD and keeps the new guys from completely overtaking the old guys. They change the balance little by little depending on my numbers until they can take me off both of them. It takes a while.

So the prayer still is that we can manage the headaches in the meantime. They increased my Topamax to 250/day. We'll see if that helps. They also increased my magnesium. I think that's because I'm not on IV fluids now. Pray that I am faithful to drink enough, which is a LOT. Please pray that I keep these dance steps moving forward.

Cha-cha-cha!