Weekend Update February 21

Coming off a nice end of the week and weekend.  Still get wiped out at night and sometimes during the day but through the grace of God and some decent nights rests I have enjoyed some wonderful days.   This week I had lots of company in the clinic.  Emma came with me a couple of times and my dear friend Debbie drove me in Thursday.  We had such a great visit and I was kind of wiped out that day so it was so helpful to have Debbie bring me in.  This weekend we saw Joseph at a track meet held at MIT (one of his competitors was a friend from grade school who goes to Trinity - we caught up with Jack and his parents which was a treat).  Joe and Jack both did well and this time we were actually able to take Joe to lunch.  It was so nice to have the four of us eating and laughing and catching up...plus Saturday was a beautiful day to be walking around the campus of MIT.  After collapsing last night (always pay the price for a busy day) I got together with my college roomie Karen this morning whose daughter is looking at schools in the area.  We had a wonderful breakfast/conversation that left me feeling blessed and confident and so very fortunate to have such amazing friends and family.


Medical Update:  Here is my tip for the day...if you are having complex treatment for an illness where the medications have multiple side effects and the illness itself can go in multiple directions, tell your docs EVERY weird, odd, seemingly bizarre symptom you are experiencing.  I am at the clinic today (Sunday) and mentioned to my nurse my tongue felt thick and it brought tears to my eyes when I brushed my teeth due to the stinging sensation - how  weird and is that....anyway one of my favorite Doctors (Dr Joyce) came by and let me know I have no tastebuds on my swollen tongue and have sores in my mouth due to GVHD (graft vs host disease) of the mouth which they can treat topically giving me some much needed relief.  Also, GVHD at small levels like this is a good thing because it shows my immune system is working (will spare you the details as I've talked about this in the past).  This is a HUGE mental boost for me knowing my immune system continues to be hard at work.  Will probably go to the GVHD dental clinic on Tuesday (who knew there was such a thing).  I meet with Dr. Avigan on Thursday and will discuss the progress of the  clinical trial as well as next steps.  One option is my staying on the trial for another 3 week cycle beginning a week from Monday.  Will keep you posted and thanks so much for checking in!!   Love Moe