(Karen here) Most of you know that my Mother-in-law is in town to help Tony and I with this scary first few weeks. In some ways, Tony and I are barley holding on. Without my mother-in-law, I'd be in a loony bin and Tony would be in the hospital. I am working. She is going to the appointments with Tony, administering his medicine, talking with the doctors and nurses, feeding him and keeping herself (and us) sane. So, a big shout out from Tony and I for such a remarkable, loving Mother (-in-law)!
Tony mentioned yesterday that he would like you all to know a few things. First of all, as of 7:30 this evening, Tony is on 27 prescriptions (not including infusions from the Mayo) and various over the counter aids. Many of you are probably saying “WHAT?!?” Yes, 27 different medicines, one of which is 7 pills per dose. This leads me dramatically into the second thing we wanted to mention. There are several mild to moderate things wrong with Tony right now. My Mother-in-law really wants to be sure all of you avid readers out there have a better understanding of the challenges Tony is facing. OK here goes:
1: The skin rashes, you all know about.
2: Graft vs Host disease causing Mouth and throat sores.
3: Graft vs Host disease causing excessive, sticky discharge from the eyes resulting in mild vision impairment.
4: Graft vs Host disease affecting the nerve endings in his hands.
5: A skin Biopsy to rule out anything not Graft vs Host disease causing
6: Elevated Liver enzymes causing them to keep a VERY careful eye on it resulting in the tweaking of his medicines every few days.
7: We won't go into all the other, littler predicaments.
Now, this might be a little bit of a downer after yesterday's celebratory air to the blog, but we keep telling everyone that Tony is “Ok” or “doing fine” while we are dealing with so much. We think its important for our loved ones to have a better understanding of all this.
Thanks – Love you all - :) Karen and Tony
Remember those endurance adeventure races where they tell you "it's time to see what you're made of..."? This is sort of like that-seems your body is trying to figure things out and sees what it's made of now. Hang in there, fight through it, and remember, the victory will be SO sweet! (easy for me to say, right? ;-))
ReplyDeleteI do hope the Graft vs Host thing starts easing up, I know a little of it was a good thing, but enough is enough already! Keep the positive energy going, hugs to you, Karen and your Mom - you guys are doing great!!♥