The longest day at the clinic

I'm writing this message at the clinic. It's 2:15 and I've been sitting in this chair since 8am this morning. The total juice that I'm getting today via IV takes about 2 hours. And I still have half an hour to go on the last juice bag. My bum aches. and my disposition is edgy. I've sat here a very long time with nothing hooked up.

Last Friday I received a big ole notebook with tons of stuff in it. Detailed information about the transplant and how to proceed. I didn't get a notebook last time, just a couple pages of protocol. So I copied the protocol pages out of the notebook and carried them with me to the clinic.

But I guess writing everything down in a notebook does not mean the decisions have been made or that the system has been laid out. First thing this morning Amy came in with a bag of equipment to measure intake and output. Then she left with the bag and I haven't seen it since. She wanted me to bring the notebook. She's going to give me papers to chart all the stuff. Temperatures, fluid intake, etc.

Right now I don't even have any more appointments. Which I have told several people who should be able to do something about it. I've seen the nurse practitioner, the pharmacist twice, most every nurse and tech in the joint. And everyone has a different story. and the final story is different from what Dr. Ganguly told me last week; and from what is in the notebook.

are you confused? Imagine me sitting in this chair with a sore butt! They promise it won't be this way again...that the first day is always a scramble. I'm ready to promise to not come back. Counter productive I know: remember I'm edgy.

Mom is with me today. She has the most difficulty waiting around like this of any of my companions. Neither of us were prepared for the indecisive mood at the clinic today.

It's not different. It's just the way it is. I'm not worried about my care. Everyone is understanding and apologetic but I am edgy with TB. There is not enough chocolate to soothe this uneasy patient.

Let's see the upside. I weighed 154. Have gained 7# over the last 2 weeks. I met in person a fellow BMT traveler with whom I have corresponded since last summer when I got sick. Dr. Aljitawi stopped by to tell me I look great. My liver counts are so close to normal I wonder if we could fudge and call them normal. I have the prescriptions that I need. And it's steaming hot outside while I am inside, and fairly cool--wearing a light jacket.

And here we go again. Amy just came in and asked if I had my scrips. Yes I said, for prograf. She asked "do you have the Cellcept" I tell her no I'm not taking Cellcept. she goes to check.... sigh.