Wednesday 08-10-11 Day +78

This has been a good week.  Glo has been here and we’ve had a great time.  We even sneaked off to Galveston for a few hours and ate lunch on the seawall, listened to the ocean and smelled the saltwater.  We ate the freshest shrimp…it was delicious!  No, I did not ask permission from my team to be over 30 minutes away from the hospital!  I decided to just go with it and I am so glad we did!

On Monday I saw my team and found out that I am supposed to be scheduled next week for my second round of chemo, however my platelet count might not be good enough yet so I will find out on Monday when I go.  I also learned that the Graft VS Host  disease may be in my gut now, so they have stopped tapering me off of my steroid drugs.  The third issue is my numb feet and weak legs, which I will see the neurologist on Friday.  So everything is kind of on hold right now.  Most of my fellow transplant buds are getting out of here, in fact the ones I knew with related donors are already gone.  They just don’t have the issues us non-related donor transplant patients have.  The non-related people I’ve been on the 10th floor with all this time are also gone.  I may be the last one standing!  But I am trying hard and looking forward!  My team isn’t talking yet about a time frame.

Yesterday I got fitted with my leg braces and think they will help me a lot.  For one thing, I can now walk on a treadmill instead of trying to find air conditioned indoor places to walk!  At first I was very uncoordinated and klutsy but it didn’t take long to adjust.  I am sure I will have to break them in!  I only have to wear them when I am outside the house.  They actually make me walk normal again.  My Physical Therapist says I have improved.  Yippee!  I am truly working at it.  Lots of walking and elastic band exercises.  My Occupational Therapist is working my upper body and the PT is working the lower body.  I believe exercise is going to be a key factor in my wellness.

Today’s agenda is to find another pair of lace up shoes with a removable insole to wear with the braces, maybe something not so pink!   So it’s off to the Galleria.  Hope everyone has a great day!