Day 70. Headache, Headache. Go Away!

Just when I thought I was doing SO good, I realized it was the drugs! The week and a half that I went without a headache was during the time that I was on the higher dose of descending steroids. The day the headaches started back was the same day that I started on my 1/2 pill. Coincidence? Yeah, I don't think so. Oh, well.

Now what? My doctors are convinced that my headaches are caused, or at least highly aggravated, by my Tacro. For now I still need to be on it. I am doing so well, however, that she is debating how soon to start weening me back. I'm a little nervous about that call because that is the med that fights against GVHD. So headache or GVHD??!

I continue to be an anomaly in this whole thing. But I do not want to take anything for granted. There are still side effects that can pop up months out. Because I "look good," the doctor and others sometimes forget that I am still sick. My numbers are in line with where they should be at this stage. Actually, they are a bit ahead. But my energy level is the same as other transplant patients. I just have hair and good skin color.

I have so much to be thankful for that I haven't had! I haven't had any skin GVHD, any blood products, or any mouth sores. I was reminded by my friend and fellow transplant buddy, Paul Pavao, that I am still very young in this process and have done exceptionally well. I have much to be thankful for! The power of prayer is undoubtedly what has gotten us to this point.

I also found out this week that if I can go all month without needing fluids or blood products that they will consider scheduling the removal of my CVC! Joy of joys! No more getting wrapped up before showers. No more doingy decorations hanging from my chest and poking from my shirt. No more being careful how I sleep on it. I too will carry the "badge of honor" scar.

For now, the main prayer request is the headache. It is daily. Constant at various levels. The meds are keeping it manageable, but it is draining. Pray for wisdom for the doctors in knowing how to best manage my meds.

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God."
Phil. 4:6