3.26.08

update:
just fyi, john's normal friday blood draw and doc appt has been changed to thursday b/c the doc is unavailable on fri. so we will have the results of that visit tomorrow.

story:
last night john tells me that his ankle is hurting (we're still not sure why, ...not the point of the story) so i reach over and feel his leg and just about fall over in shock; his skin. his skin has changed. the doc said to expect this, yet another unwanted side effect of the steroids, but it still took me by surprise. his skin is like paper, but not any ordinary paper, oh no. his skin is like that japenese silk paper that dainty arts are crafted from. it reminds me of the skin of really pre-term infants. this scares the crap out of me considering the amount of blood thinners he's on. i feel like one average papercut could make him bleed out. i know i know, that's not the case; but that's how it feels, like he should be in a bubble.

of course he's not. he's the opposite. he's up and around and trying to do a bit more every day and helping with the kids and in pretty good spirits and mostly sleeping through the night and over-all is doing pretty well. thank God. and i'm not trying to deminish the significance of that.

i mention it only b/c it's the opposite of what i would have thought. to just look at him, he looks pretty darn good. it's deceiving. it's a startling reminder that despite how far he's come, he still has a long way to go. sometimes, for brief moments, it's like he's not sick. i'm hoping those moments come closer and closer together and last for longer and longer periods of time. in the meanwhile, i will try not to let the startling moments derail me. i will choose to focus on the positive. that's really all we can do after all.

(but please keep the prayers comin' anyway) =)
thanks.
k