6.8.08

wow. i knew it had been a while since i posted but i didn't realize it was almost a month. i am sorry to those who do check this for updates. blogging is hard in a lot of ways; helpful, but hard. i can't believe that this has gone on as long as it has. i suspect that my not blogging is actually tied to my refusal to believe that this has gone on this long. a sort of digging my heels in denial that in the end does no good. so, enough about me, here's the news on john.

on may 23rd john had the first new spots of vasculitis that he's had in months. they appeared on his ankle, two of them (actually hundreds of tiny healthy blood vessels that rupture because they are attacked and destroyed by a confused immune system, and then the blood pools together to look like a large spot), one the size of a silver dollar and one the size of a quarter. this freaked us out b/c the last time this happened it led to a full blown wave of vasculitis and hospitalization. so we wiated, held our breath ...nothing. no new spots. swelling and pain, yes, but no new spots. then within the week they started to fade. hum.

one week later, may 31st, john got vasculitis spots that were different than ever before. they were not random roundish shapes but rather long, thin, horizontal streaks that look as though he's been cut side to side with a razor blade on the back of his legs. again with the swelling and pain, again we hold our breath, again they stop and eventually over the week start to fade. hum.

so it seems that his body is wanting to go into a new wave (bad news) but something is stopping it (good news). either the meds are working, or his body is figuring it out. so, you'd think that would be all good news, except that, ...he's now off his meds.

last thursday, june 5th, the doctor told john that he can no longer keep him on this chemotherapy or we are just about making it certain that he'll experience side effects (leukemia, bladder cancer). the doc said that he cannot risk "the deterioration of your internal organs" any longer; ack! so effective friday, two days ago, john is no longer on chemotherapy. the doctor told him, "you have a 50/50 chance" of starting over at square one and having another full blown wave. then he said, "good luck". that's it. good luck. john asked, "so what happens if it comes back?" the doc said he'd have to go back on a different chemotherapy but honestly this one was the strongest (harshest) so if that didn't work then... hum.

so, if john's body was finally figuring it out and managing it on its own the past two weeks then that's super. if it was instead the meds that was doing the trick, well, then we're in for a long haul and should know soon as those meds are out of his system by tomorrow (it takes 3 days). john continues to be on the steroids and insulin and blood thinners. but the steroids alone were not fighting off the vasculitis, that's why they were paired with the chemo. maybe this time they will. we are hopeful. so, again we hold our breath...

then there was last night...
we had been asleep for about an hour or so when john woke me up in excrutiating pain in his leg to the point that he told me he almost fell to the ground. like a charlie horse but with swelling too. this is a man who has an exceedingly high threshold for pain and has been living with pretty serious pain on a daily basis for five months now, so this sort of freaked us out. the back of his knee was really swollen and he said the pain was all the way down to the middle of his foot (the clot only went, last we knew, to the middle of his calf). he had been saying for a few days on and off that there was pain in the bottom of his feet but we're never sure what these mystery pains are so he's been just learning to live with them. i asked if he wanted me to page the on call doctor and he said yes (the only other times he's said yes he's landed in the hospital). i went and paged her, she called back quickly, i told her what was going on, and by the time i went back to check on him he said the pain was sort of going away. we ended up going back to sleep and he slept through most of the night. this morning the swelling behind the knee was totally gone. it was one of the strangest episodes we've had in this whole story. it was so so intense; ...and then just gone.

the on call doc said that it is possible that while he was sleeping he was positioned just right for the clot to push against a nerve and once he got up to walk around it released the pressure. maybe? but she also said that if that were the case it would not account for the swelling. john said that over the past two weeks he's been getting a sensation in that leg that he's about to get a cramp and then doesn't. who knows. the on call doc said that if it happens again this weekend (or if the swelling hadn't have gone down) he should call and get in for an ultrasound on that leg.

so that's the story for now.
john's mood continues to be good despite everything. he tries to be involved as much as he can despite the pain b/c he knows that it could always be worse and then he won't be able to at all. he has admitted that he really is worried about going off the chemo, though just as worried to stay on any longer. we'll continue to take it day to day. we have made plans to go camping as usual this summer. it's actually more vacation time than we've taken together as a family in probably, ever. i have chosen in my heart to really focus on our family this summer and cherish the time that we can spend together. i'm blessed to have a job that affords me flexibility in my schedule. we have incredible kids who continue to be worried for john but troopers through it all. and john so rarely complains that every day i am inspired by his strength.

keep praying!
k