The Valley I didn't think about

I am now in a valley... which is normally a good thing when you're out on a back country hike, but in this situation it's a little unnerving. I didn't think about this before the infusion and am getting a good taste of reality, but I also know that this is the final umpapa before things start improving.

What's my valley? Well, cyclophosphamide stops working about a week after you stop taking it. I think it stays in your system a little longer, but I definitely know from experience that there is a week on either side of starting or stopping cyclo where you feel a definite difference in symptoms.

I just saw my doc on Friday and asked how long before the Rituximab kicks in and she said four to six weeks and for some people two to three months (I wont be one of those however). Sooooo, there is a few week period where symptoms will probably come back - I'm starting to feel the headaches and the shooters making an entrance.

I also asked about why some people are getting an RTX infusion every six to eight months and if I had misunderstood our goal. She reassured me that I had not misunderstood and in my case we will not re-infuse unless I have another flare. I am not interested in needlessly taking drugs and being B-cell depleted for the rest of my life. What I am looking for is a normal life with a drug free remission as the pillar holding that together - for a looong time.

I thought of something the other night. I have always been a strong believer that change is great. I have always loved change. I wonder if I got an 'in your face' from the universe.... but I still have to say that I love change. It keeps things fresh, even if it is with a stinky disease like Wegener's. There are so many people I would never have met and things I would not have done had I not been introduced to Wegeners's. So in YOUR face, 'in your face'.