I know it's been a very long time since I last posted. The Hickman catheter that I had placed back in March was removed a couple of weeks ago. I had it for about 8 months. It was difficult to live with and I'm just glad it's gone. I had the photopheresis treatments twice a week through August. Then it went down to once a week for 7 weeks. They finally removed the catheter on October 11. The treatments themselves seem to have been beneficial to some degree. My skin appears better -- smoother and better color. My eyes are still giving me trouble and I think it's from the prednisone.
At one point during the treatment, I got sick. Just plain old sick. Rachel had come home from Israel with a sinus infection and I missed a night's sleep while sitting at the airport and I just got sick. But the docs, doing their due diligence, assumed it was GVHD and increased my prednisone from 7.5mg daily up to 20mg daily. I can't begin to describe my despondence. Seriously. The whole point of everything at this stage is to get me off the prednisone and the thought of increasing..... well, let's just say it was enough to throw me into a serious funk.
Since then, I've been decreasing gradually and am now taking 10mg daily. I'm very, VERY eager to be done with it for a gazillion reasons. The side effects are so yucky. I've actually forgotten how I look with a regular non-puffy face with non-puffy eyes. Secondly, the insomnia is crazy! I take Ambien to sleep every night but for some reason, some nights, it just doesn't do the trick (like last night). Third, they say it makes you crazy. I'm definitely more emotional and I can cry at the drop of a hat. My family sees the crazy part more than I do. I guess that's one of the benefits of crazy. Also, there are things I want to do with life and I just can't yet. It seems like it's all on "hold" until I can finish with the prednisone.
I'm thinking of going back to school, maybe finding a job, doing some traveling. I really gotta move on.
If there's anyone still out there... anyone still reading this... I'd love to hear what you have to say. Love to hear your thoughts, suggestions, any feedback at all. I thank you so much for being there and for your ongoing love and prayers. Believe in Miracles!
