You know if I haven’t blogged all week, I’m either having fun with Blaire, or busy at the hospital! This week it was both! It all started out with muscle weakness in my lower legs and numbness on top of my feet. So I was referred to Physical Therapy for an assessment. By the end of the assessment, Andrew informed me that my anterior tibialis muscle is very weak due to the steroid treatment I am on for GVHD. This is the muscle going from the top of your foot up the shin bone. By the end of the appointment, I could hardly pick my feet up and arrangements were being made to have me fitted for braces to keep me from falling. When Dr. Hosing found out, she referred me to a neurologist to have a consult to rule out any neurological problems. I had my first therapy session with Andrew on Thursday. I made it through fine, but was glad it was over! When my muscles get tired, it’s very difficult to pick up my feet when I am walking and my feet just kind of go “splatt” on the floor. Weird! Then I had my Occupational Therapy assessment with Vivianne Tuesday, and found out that I will be learning lots of good tricks to deal with Cancer Related Fatigue. She is preparing me for the transition I will make whenever I go home, especially around the week that I will be on the Vidaza chemo every month. I will go to PT twice a week and OT twice a week until I am released to go home, and I think it is something I will enjoy. They are both in the Rehabilitation Services at MDA and have a very nice facility and extremely caring therapists. I am in the process of being scheduled for the neurologist, so I don’t yet know when that will happen. I will be fitted for the braces Tuesday. Another great appointment I had this week was my First Survivorship Program Visit with Nora. It was a 2 hour class, one on one, preparing me for the transition of going home and beyond. I got all the scoop on what and when I can start doing things again, really every aspect of life after transplant. I found it very encouraging, helpful, and hopeful! Nora will be working with Dr. Hosing’s team on my return visits, scheduling different labs, tests, and helping me with any issues I may have. At the beginning of the session Nora told me I am a survivor now and caregivers are now included as survivors too! Blaire and I shed a few happy tears when she was talking about that! My team is starting to decrease the steroid treatment as of tomorrow, and then we will see if my GVHD is going to flare up again. I think this will determine when I will get to go home. So everybody have happy thoughts that it will be OK!
Blaire and I had a great 5 days together! It just passed by too quickly! On Tuesday we met Kelli at La Madeleine for lunch and had a great time! I learned that when nothing else sounds good to me, their potato soup tastes really good! Andrew, (the PT) told me I needed to walk at least 2 extra hours a day for my leg muscles so Blaire and I incorporated walking into shopping. Not a bad deal! I took Blaire to the airport this afternoon and picked up Glo about the same time. I’m really looking forward to spending the week with her, we started off with a nice early dinner at PF Chang. Yummy! I think the next time I see some of my “caretakers” it will be at home, so I am really enjoying spending my last few weeks with them here in Houston!
Everyone have a great weekend!