Today started off great. First off, Dr. Burt and his nurses came in and talked to me about the procedure for the day. They told me the catheter was coming out (WOOHOO!) and asked me if I was ready for the transplant tomorrow. They asked me if I had any questions, which I really didn’t because I have read so much about it. The handbook really helped me to prepare for this too. Dr. Burt was showing everyone my picture of Barney and Olivia going up the stairs for bed. He likes that he was a Montana dog.
Afterwards, the nurses came in and took out the catheter and it was a bit shocking coming out. Fortunately, it didn’t hurt when I went to the bathroom. I was worried because when I had one when I was little, it hurt really bad, but thankfully this was less painful. I was super nauseous yesterday and felt like it peaked from all of the other days. I went and pulled my chair to the window and reclined the chair. I sat there for hours and just shut my eyes.
After eating six meals of Raisin Bran, I was feeling a little better about having regular food. Liz went and got some Chick-Fil-A sandwiches for me. Before she dropped them off, she went over to the parking garage again with Olivia. I was in the middle of changing from my shower and looked away for a bit while they were running around, but when I looked I could see Olivia running. Right after that, she fell forward and hit her head. It was so heartbreaking to see her crying and Liz comforting her from a distance.
Don (my fellow HSCTer for CIDP) texted me and asked me if I wanted to cross over to the other hallway and meet up with him for a walk. The way this floor is set up, is that there are two wings to the floor and they make it very clear that you shouldn’t go into the other wing. I am the only one on the south wing and the other HSCT patients are all in the other hallway. I put on my gear and when I walked out, the nurse said that I had a friend waiting for me on the other side and that they were not supposed to condone this meeting. I said “Well, I didn’t see anything, if you didn’t see anything” and they said “We didn’t see anything.” and they let me cross over. As soon as I crossed over, we walked down and bumped into Colleen, who just had her stem cell transplant this morning. She told us she was feeling pretty good. Another woman came up and talked to us, who had leukemia. There were four of us all hanging out in the hallway. We also stopped by Shannon’s room to say hi too.
During the day, my brother-in-law Wayne texted me a video of a 12 hour race we did three years ago in Ruidoso. It was such a great race because we were battling out for first place for Lady Cluck and the Boys and we won on the last two laps (Liz put us in the lead on the second to the last lap and Wayne went out on the last lap to hold them off.) ! Sending the video pulled me out of the funk I was in, but got me fired up about mountain biking again. I made a pact with him that one year from now we will do that race again! I told him he may be doing two laps for every one of mine, but we will definitely be doing it!
Unfortunately, I also got a call from Blue Cross today during all of my treatments. They were trying to tell me that things that they were covering for us, are now not going to be covered. The worst part is that we have that approval in letter form. It’s frustrating that they would promise us something and then take it back.
Pretty much the rest of the day consisted with sitting with my eyes shut and sleeping a lot. As good as I feel, it just felt good to not move. I got my last dose of the rATG (rabbit steroids) in the evening and all of my other medications for nausea and sleep. I also got another message from Don for another late night walk with popsicles. Again, I was crossing the border illegally to other wing.
I’m excited about tomorrow and my stem cell birthday! I’m sure it is all of the medications and steroids, but thinking about tomorrow is a little emotional. I’m in awe of everything going on. When I started looking at this, it felt like a long shot to get here. It feels unreal that this is happening!