Saturday, September 25, 2010

Imerging triumphant (and itchy) from the great fever dabacle of 2010

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:

K? k.

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:

I'm not even going to tell you where that is (sideboob) but will say that yes, it hurts as much as it looks like it does. No one ever showed me a picture of GVHD that what anything OTHER than the really extreme scary stuff. This is painful but not extreme.

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.


  1. Whoa,ouch,not fair, keep your eye on the prize,kick ass,get some rest,keep healing.
    <3 Andrea

  2. i laughed OUT LOUD at the snl clip. FIX IT!! hahaha! i'm so gonna use that. really, laura, what a journey- bumpy, rocky, little smooth, rocky again, mountainous, smoothing out, bumpy, (literally and figuratively), you are a damn trouper. this is bigger than climbing everest. and every stinkin' day, you're one day closer to coming home to us! keep with you at all times: the hiking boots, the trailmix, the forehead lamp, the special cushy socks and maybe some moleskin, remember to wear layers, and most important, a big ol' backpack of goodies. (okay, so not really, but i do recommend the backpack of goodies.) I love and miss you, friend! xox

  3. Laura, you are the BEST. FIX IT was hilarious and I can really see why you are thinking that way. I cannot even begin to understand the frustration you are feeling - only to say HANG IN THERE. you WILL get through all this f'g nightmare. I know those insulin shots suck. And all that pricking of your poor little fingers. Kandis had a spray she sprayed on Liv's fingers right before they test you for your sugar level. Maybe you can request that stuff! Hope you get the heck out of there tomorrow so you and your mom get that mother-daughter bonding time. xoxox Crazy Aunt Lizzie aka CAL!!

  4. Hi Laura, this is Olivia's mom (Liz's sister-in-law)met you at the hospital several weeks ago...Olivia has been dealing with the GVHD of the skin for a couple of months now and we have a better response topicall to a Tacro cream rather than Aquafore---don't know if the adult docs treat this the same way topically as the pedi docs, but it has been helpful. Of course this is on top of the steroids that we are trying to wean her off of.
    I hope you get out soon, being able to sleep in your own bed makes a huge difference mentally and physically! And I can totally identify with the stupid middle of the night questions or even pulling you from bed at 4 am to weigh when you are admitted!
    Hang in there, it gets better. Happy belated Birthday and Many More!!

    Kandis and Olivia

  5. OMG ... what a week, laura. to say i'm sorry you are dealing with all of this doesn't seem to be enough. how about this ... from this day forward ... you are NOT allowed to have anymore GVHD rashes, insensitive doctors, nurses asking silly questions, high fevers, mouth sores, etc. i could go on, but let's allow the universe to digest these requests first. you are the meaning of strength ... even when you cry. think of your tears as the water that helps your strength grow. even though i'm not at CW right now ... i miss you! xoxo

  6. Laura.
    You don't know me, but I was introduced to your blog by a teacher friend of mine (MLM) back in Malvern. I am thrilled to see you writing again, I admit I was worried when I didn't see anything new when I sporadically checked it last time.
    I get my boobs smashed tomorrow out here in WA state, and that little pain will pale in comparison to that I feel for you and your GVHD'd boobs!
    Thank you for sharing your world so raw-ly...and belated Happy Birthday wishes to you young lady.
    Lisa (aka anonymous)

  7. hey laura, loved this post and the clip was priceless, I couldn't agree with you more about the sadist high horse docs! well said! it's so good to know that you - articulate, smart, hilarious, take-no-prisoners you is fighting on the front lines. hear you roar, warrior!
    love to you!!!

  8. Hi Laura,
    You are on my mind and in my heart.
    Are you still in the hospital?