Tapering Early…Or NOT

Today at clinic was so nice because all I did was get my blood drawn, wait for my labs and meet with my PA. It was short and sweet. Usually I would go back to the infusion area and wait for my labs there while I got a liter of fluid (takes 3 hours). Now that I am down to 1 day a week I will just be getting my labs checked!

Although today was good, it was also disappointing. I always thought I was going to start getting tapered off the immunosuppressant medication on day 180. That is in exactly 2 months. But today my PA said that one of the doctors who specializes in cord blood transplants wants to start tapering me now! That way I can be already tapered by day 180 and my “baby” immune system can start building itself and fighting infections. That almost made me cry I was so happy!  But then she asked me if I’m having any GVHD symptoms, and sure enough I am. Starting Saturday I started getting a rash on my arms and neck and unfortunately it’s GVHD and not a reaction to something. If they start lowering the dosage of Prograf, it will cause the GVHD to get worse, not better, so I have to stay on it until the rash clears up, AND several weeks after to make sure I have no more flare ups. THEN they can start tapering. He said I probably bought myself time to about 180 days L Not what I wanted to her. Tapering now would have bought me 2 months….that means being able to go to the movies, out to dinner, to the grocery store, back to work 2 months earlier! So disappointing…I can’t even describe it. 2 months may not seem like a long time but it is when you are restricted from doing the things you enjoy.

My sister said it best when I was crying to her on the phone after my appointment. She said just keep praying and leave it in God’s hands. Everything will work out just fine! Times where things don’t go as planned (not that this was planned, it was quite a surprise!), I temporarily forget not to worry about it and let God handle it all because he knows best. Maybe it’s just not the right time to get off the drug. My body obviously isn’t ready since I’m getting GVHD. Hopefully by Day 180 it will be ready J

But on the bright side (best to look there), my bloods counts looked great today, and having some GVHD is good because it reduces your chance of relapse and means my new cells are working and attacking things foreign to it!