Still Working on It

We're doing well in our corner of the world.  The kids still have about 2 weeks left of school.  We are all excited for summer.

 I'm still grappling with GVH issues.  It is affecting about 90% of my skin.  It's not painful.  It affects the pigment, making my skin blotchy. It feels tight and itchy across my back.  This, combined with the meds I'm on and the total body irradiation I had last year in prep for the transplant, makes it necessary for me to be VERY careful in the sun.  The sores in my mouth have not improved.  I've been on Prednisone since...oh, March? Since it hasn't helped, and has some pretty significant short and long-term side effects, they've been tapering me off of it.  2 weeks ago they added another immunosuppressant to my regimen in hopes of nipping the gvh.  So, I'm on Tacrolimus and Cellcept (the immunosuppressants), Prednisone, Magnesium (the immunosuppressants are magnesium depleting, and if I don't take it my joints get cramped and lock up), as well as the antibiotic, antiviral, and antifungal.

A couple of weeks ago I cam down with some nasty bug that knocked me out for 3 days.  Cory took time off of work and stayed home to help.  I was so grateful he was able to do that.  The burden he has had to shoulder through all of this is no small thing.  He administered a Priesthood blessing to me at that time, and I was counseled to be patient and to rest more.  I have gotten back to trying to nap a little every day, and Cory has been really mindful of helping me get the rest I need. I think between the transplant itself and the gvh, plus all the meds, my energy has taken a little dip.  Well, and my counts are a little low.  My platelets took a dive and my hemoglobin is also running low.  I am frustrated with my doctor.  I like the Nurse Practitioner, but the doctor is not my favorite.  I've had such incredible doctors up to this point -- my DC Oncologist, Dr. El-Shami, and the team at Huntsman in SLC (Dr. Hildebrandt and Teresa, the Nurse Practioner) -- so the standard has been set high.

BUT, overall, I'm doing well (I was able to recover from whatever bug I got without complications, so kudos to my baby immune system!) and the kids and Cory are, too.