Sorry for my mum status this week ya'll. Trust that if I could have written anything other than
'adlksjaeorieew0900 droooolll da;lfdka8r902[asdjfakl cupcake?cjakl; cajklda;sfoewruioowaerjkds;lkajsdf ITCHYMOTHERFUCKER GET OUT OF MY ROOM!"
I would have. Although methinks that would have made a great entry.....
Here's the down and dirty on whats been up the last uh...week (some of this is redundant if you've read my post from several days ago):
I was taken to the ER with a fever (101.2) on both Friday and Saturday nights last week, the first of those two nights (Friday) I was sent home when the fever broke. Saturday night the fever spiked higher and brought a serious sense of 'uh, this don't feel so good in mah body....something in't right..." and I was admitted to good ole G9. Also, my mouth exploded into what felt exactly like mucositis all over again (but didn't look like ANYTHING except that my lips were swollen, weirdness). They started pumping me full of narcotics (thanks intake nurse for battling the on call douchbag uh doctor to finally get me some relief here) and antibiotics. On Sunday I waited around miserably for the 'audlt service' doctors (i'm no longer being treated by the peds doctors even though i'm on their floor) to come in, shrug their shoulders and tell me that my blood cultures hadn't come back yet but that they have no idea what is going on. Mmkay, cool. I slept and cried like a wimpy kid for the rest of the day.
Monday rolled around (after a hellishly feverish night) and yay! Happy Birthday to me:) Thank you EVERYONE for the cards and gifts and videos and love you remind me of the REALLY important stuff: love and friendship and loyalty. If I may say so, one of the brightest lights this day was the huge envelope of cards from my students at Chestnutwold- tears of joy for the first time in long a while. Thanks C-wold friends for taking the time and energy to put that together, it was a very special thing:) A big box of gorgeous cupcakes arrived from T.B., J.B. and little cutie H.B so a HUGE thank you to them:) MMMMM cupcakes.....!!!!
Funny story: because of feeling generally shitty thanks to whatever was in my system, and the gross effects of the antibiotics and antifugals and unable to eat properly over my monster lips, I hadn't had any real food in about three days by my birthday. You probably have felt that "omg I neeeeeeed to eat but I freaking CAN'T KILL ME NOW at some point in your self, and know how uncomfortable that can be, so I figured enough is enough and requested something to help my appetite. THe nurse started shaking the doctor-god tree and this is what came down from upon high "Oh, she can wait at least another day, let's see how today and tomorrow goes and then we'll try something." UHM WHAT. You should have seen the nurses' face when she came in with that gem. As calmly as I could I let her know that that answer is not acceptable and to please see if there is anything else she can do (I always feel bad putting the nurses in this position but if the doctors would pull their heads out of their golden asses and strap on some sympathy we wouldn't have this problem). She hurried off and a half hour or so later showed up with Megace (there's the real spelling!) to stim my appetite. IMPORTANT NOTE TO DOCTORS: Pain, hunger, inability to sleep, effects on bathroom habits and extreme fatigue are NOT CONDUCIVE TO HEALING YOU SADISTS. GET OFF OF YOUR MEDICAL PHILOSOPHY HIGH HORSE AND TAKE THIS ADVICE:
The next few day or two were pretty uneventful (read: me sprawled in bed with zero energy sweating and grumpy while waiting for them to FIX IT) except for a moment of 'oh hell no' when the idea of removing my CVC and replacing it with a PICC line (goes in your arm) came up. Basically all of my blood cultures and clear meaning there is not evidence of bacterial infection anywhere, fungal cultures take too long and they can't really test for a virus (which is what lots of this probably was), so to try to minimize the spread of phantom infection, they wanted to chop me up again. I can't quite pinpoint why I nearly lost my marbles at this idea (mostly fear) but it just didn't seem appropriate. Something like using a chainsaw to kill a gnat. That idea was nixed after I managed to keep my body temperature stable for 24 hours (whew glad for that Olympic temperature stabilizing training...uh). After one more night of hell when suddenly my skin GVHD, which has been all but gone, EXPLODED HELL FIRE ALL OVER MY BODY (I am profoundly sorry to the nursing aide who came in and turned on the lights to ask me if I had had anything to drink at 2:30 for the language that sprung forth from me, really I was an asshole and you didn't deserve that. though it was a dumb question..), they finally looked at my tomato face and scary rash boobs, scratched their goofy heads and went "OOOOOOOHHHH, this might all be GVHD" and appear to be FIXING IT! I've been given an ultrasound of my liver (whose enzymes have been stealthily multiplying and sneaking out) which showed no GVHD there, just a sassy reaction to the billions of poisons being pumped into me, and a GIANT cup of pills to swallow every night, two humungoGVHD of the skin looks like? Well, you've come to the right place because I'm an over sharer like that:
Also, because of the high does of steroids they have me on, my blood sugar has gone apeshit resulting in my first ever insulin shot last night. While I know this is temporary and there is nothing I can do in my diet right now to help the situation, I found that the idea of the insulin shot REALLY freaked me out. The idea of surrendering and maybe also changing my attitude a bit, has been a big adjustment this go-round. The rose-colored glasses are....tilted down my nose a bit, not gone though... and things are looking a little more like I expected them to look before heading down here. yes, these last few days were discouraging (I've don't everything I'm supposed to be doing and I STILL ended up back here?) and angering (fuck this. this is NOT fair) to sad ( I want my old life back) but I'm working hard on remember those principles and goals that I set so firmly coming into this. This is momentary and all of the above is true. Now what are you gonna do about it?
So Pappa bear went home on Tuesday and P flew back to PA last night for a few weeks (lots of crying involved in that goodbye) it's just me and Momma here for a little bit. We're thinking of some very girly redecoration to the apartment when I get sprung...think college dorm room gawdy....yesssssssss and some good old-fashion mother daughter bonding. It's looking like I'll be sprung on Sunday (maybe) or Monday (probably) AND the weather in Houston next week looks (gasp) really nice!
There have been cards and voicemails (particularly voicemails) these last few days that have helped to take me from a place of really really really scared and angry, closer home to a place of acceptance and determination. Thank you all for keeping my head on straight and helping with my little grump slump.Thank you dear friends. I miss you with all my heart and am so thankful for your steady loving presence. Much Love.