Good job buddy! Your prize is...um...you get a shout out on the internet (how many internal organs can say THAT?)! Maybe I'll even stick a gold star to my abdomen...
So, WTF am I talking about? I've been to paranoid about jinxing this to post earlier in the week, so let me tell you what's been shakin' around here.
On Monday, my team (Dr. De Lima, Lynn and Jason, my new PharmD) made the decision to take me off of a bunch of my drugs, switch my anti-viral (I am OFFICIALLY CMV FREE! woo? yeah, that's not the make-me-pee virus. still the Pee Queen), lower my steroid and take me off of the IV anti-fungal drug I've been infused with everyday since my second hospital stay (itchfest 2010). Why is this all so important? Weeeelllll.....
Lowering my steroid to only one pill a day, or 16mg (I started on eight pills a day, or 128mg, seriously mastodon dose, wasn't kidding) was a huge step- it meant that they were testing my body's ability to stave off the GVHD on it's own. I was sternly warned to watch my skin and eyes closely this week for 'flares' or yellowing and to wait until today (Thursday) to see how my liver enzymes fair. They assured that if there were no 'flares' (read: explosions of red, itchy hellfire on my person) AND if my liver enzymes and bilirubin stayed within normal limits, then I would be in the clear to come home on time. The step of taking me off of the IV anti-fungal and sticking me back on the oral anti-fungal that I was initially treated with (for you Pharm nerds: from caspofungin to fluconozole), was a big 'ole SAT style test for my liver as well as one friggin' step closer (the biggest step) to having this fucking CVC taken out FOR GOOD. To review: my assignment for the week was to maintain a normal liver function and avoid breaking out into a rash. Easy. I got this.
So, for the last few days Phil and I have been staring at my (completely clear, if not very sensitive) skin like a nutbags and yanking on my eyelids to be absofuckinglutely sure that no, my eyes are NOT yellow. AAAND GUESS WHAT?
NOTHING! Nothing fucking happened! My skin is CLEAR! My liver EFFING WORKS! I'M COMING HOME ON TIME!! woot!
Soooo, yeah:) We don't know yet what our return date is, or exactly when this FUCKING CVC is coming out, but the important part is that it will happen at some point in the next 16 days. 16 friggin' days. On time:)
On the topic of the CVC, when I asked my doctor about when he thought it would be coming out, his initial reaction was quite apologetic saying "Oh, errrr, eehhh one thing at a time", to which I said "But I won't go home with it, right? It's coming out around day 100, right?" and he said "OH yes, yes, yes, but you know, not for another two weeks or so"....I cried. Cried. Only two weeks (it was 19 days at that point) with it? Amazing. :) One of the best parts of that day was that my best friend, Maggie, was there to share it with me. She took a ton of pictures of her visit, if you're on FB you've seen 'em (or maybe you've just seen the shine from my moon-face from Philly...), some of which I hope to post here with her permission.
Sooooo yeah:) Good news all around, and it was sorely needed 'round these parts. The last two weeks have been kinda rough, between being heartbreakingly homesick, painfully puffy and peeing my brains out every thirty seconds. Though Phil and Maggie being here was enormously healing. On the topic of that other internal organ that was being a motherfucker (eh, that means my bladder), it's better, it's mangable, my bed is dry, It is exceedingly distrubing how much that virus impacted my quality of life. Top that with the swelling in my face and chest, oh boy was I a walking, uncomfortable contradiction. Not to be too gross, but seriously? SERIOUSLY? Leaking AND puffing at the same time? Now that's just fucking cruel. But it's better now (well, not the puffing...), and will continue to get better and WE'RE COMING HOME:)
Thinking about returning home, to "normal" life (though it won't be normal for some time), seeing dear friends and loved ones, feeling the chill of a proper winter and looking forward to the holidays...well, I have tears rolling down my face. Returning to my home with my husband, to our kitties, is overwhelming. This road has been tougher than any of us imagined, tougher than I imagined at least. The warm light of loved ones and comfort is so close, though in reality it always has been. Of hugging and thanking in person those who have helped us and loved us. These next two weeks or so will both fly and drag, but they will pass. Justicia offered clarification on the bike story I wrote about a few posts ago, I am so grateful to her for doing so: we are invited to notice the ground in front of the tire, this moment, not only to avoid focusing on the top of the mountain, though that is when things seem insurmountable. This journey is going to so much more than the end, so much more than home, than savasana. This is like the ending sequence of a really tough class. I'm tired, worked over, maybe sore, emotionally spent and looking toward savasana. That's the time when the most is learned, I guess. It's not about savasana, it's about everything after that and before that and that at the same time. Maybe this is the time when I'll learn the most from this experience. I hope. J, thank you. The beacon of home can sometimes become so bright that I forget to stay in this breath and this moment, no matter how shitty it is. Thank you for giving your wisdom, it really is like ending a class with you! These are the moments of yoga. The moments of breath and focus. Damn, this yoga is so much harder than handstands and backbends....
Thank you, dear friends. For every reason I have ever typed. We're coming home to you soon:)