Wednesday, October 27, 2010

As the (facial) tides turn

Uh...hey. Yeah... it's been awhile.

Sorry 'bout that.

I've wanted to write, had whole posts halfway written in my head, started to type some of them...but then just ended up messing with my blog design in an attempt to make the type larger so I could read it and was forced by blogger to update to the new design platform (you like it? hope so...apparently it can't be changed back!). Um, or I got distracted. Or bored with my own words. Or fell asleep. The thing is? There isn't much going on 'round here that is too terribly interesting, or at least not to anyone other than well...no. There isn't too much interesting going on (medically speaking, I guess). That's a good thing. A really good thing.

A rundown of the medically mundane? Alrighty. I'll understand if you yawn into your keyboard or go back to stalking your second grade crush on Facebook.
  • My steroid dose has been reduced dramatically (by a bit more than half since the last time I wrote about being a 'roid monster). I am no longer a super diabetic, though still require a little insulin, and am not eating everything in sight. Thank god. That was really uncomfortable and I was going through an unnatural amount of Halloween candy. Oh and I am not literally tranquilizing myself at night in order to sleep. Tranquilizing. Not joking.
  • The 'ole liver is functioning like it's supposed to. Good liver. Keep it up champ.
  • Some goofy stuff showed up on my labs on Monday, which obviously prompted the million-question-game (or how-much-can-Laura-annoy-her-medical-team-before-they-run-away game). Apparently, and they can tell this from a combination of goofy chemistry levels in my blood, my blood type is getting ready to change. Now THAT is fucking cool.
  • My blood is genetically male (have I posted that before? errr). Gross.
  • Last week after a reduction in my steroid dose, Phil and I got all paranoid because I started to get a wee bit itchy and a wee bit red. The GVHD warning lights went off and I spent most of the week slathering myself in goop and praying to Jesus/Buddha/Krishna/Flying Spaghetti Monster that the fucking tortuous  GVHD rash wasn't returning. It didn't. Whew (no really WHEW).
  • My hands shake constantly now from one of the drugs I'm on, it's only annoying when it causes me to dump half a bottle of black nail polish on the carpet.
  • That darn neuropathy hasn't gone away, but it seems to improved the more I am able to work out (you were right Jeannie!), which is pretty cool. having the strength to actually work out is pretty cool too:)
  • The hair on my head is starting to grow again! There's a five o'clock shadow starting up there, but in this really funny, uneven way. It's too fine still to take a picture of but, if you could see it, you would laugh and want to stroke it (mmmmm STROKE MY FUZZZZ! 
There's this other thing happening, this really REALLY weird and painful and annoying other thing, that warrants it's own (several) paragraphs and pictures.

My body has developed it's own tidal pattern. No, really. I'm pretty sure it's even in sync with the moon. Remember this gorgeous site the other night?
Phil and I took a walk around the apartment complex on the night of the full moon because it was a GORGEOUS COOL 70 DEGREES:)

That beautiful October full moon? Yeah, so does my face. The steroids have had a delayed effect on me giving me that well known 'moon face'(remember when I post that I didn't have moon-face? yeah. me too). My face, well, everything from my waist up, swells at random parts of the day. You can actually watch the tide "come in" and "go out". Ask my sister, it happened twice with my face while we were Skyping the other day and it really freaked her out. Like I said,  it's not my face that swells, though my face is pretty much always moon-y now, it moves around. Sneaky bastard. Sometimes it's in a ring around my neck. Sometimes it's the backs of my arms (THAT looks really weird). Sometimes it's my tummy. Sometimes I go up a full cup size in a half hour (you would think that would bee cooler than it really is). On really awesome occasions all of it puffs at once, which is pretty much how I was during the fullest of the full moon.  As uncomfortable as it is, there is something sort of interesting about it. Like I'm in sync with the flow of the sun and moon in a really freakish way. Connected with the earth or something...

In an attempt to quell the swelling, which, yes, does hurt, I attempted an experiment involving a bandanna, a frozen eye mask and my face. It failed. Photographic evidence:

(Disclaimer: the decision to tie a frozen eye mask to my face with a bandanna was made under the influence of heavy sleeping and anti-anxiety medication. Yes, I was high. Yes, I took pictures. Yes, you should laugh at me.)


Yeah. Hey, look! You can even see the weird swelling obscuring my clavicle in the the picture on the right. Cool.

Another cool place the swelling is going? In a LUMP on the back of my neck. This super-cute bullshit is lovingly referred to as a 'camel's hump'. Not joking. It's the new thang. Sometimes I have several baby 'camel humps' on the back of my neck. Sexaaaaay

On Monday I had a very puffy conversation with Jim, my PharmD (because Dr. De Lima was being really annoying, no really, he was being annoying. Those eyebrows are just NOT always charming. And was all rushy-busy about it too) about what can help the Tides of Laura until they recede on their own. He offered an adjusted (and terribly boring) fluid plan.  Lasix are out of the question for a variety of boring reasons, so there ya go. It's kinda working but it's only been two days. Give it time, I say!

While at first, this puffy-moony thing bugged me quite a bit cosmetically, I've resigned to remembering that (and am relieved to know) it will go away within a few weeks of stopping the steroids completely. Meaning that I will look more like me by Christmas. Hey, I'm cool with that. It is ouchy when it gets bad (and I'm starting to realize this whole discussion is kind of gross. You know, me talking about my fluid retention issues...sorry:/), but then the tides change and it gets better. How's that for a fucking metaphor? Isn't that just it, though? It gets bad, it hurts and then it goes away. Then maybe 'it' comes back, but the waters have to recede again at some point. Even when the waters make you look like this:

Hot. My sister's reaction? "Laura! Lay off the cupcakes!" Yeah, no. You should see the rest of me. When not full of fluid I'm all scrawny. Dear Kris Carr: THIS IS NOT CRAZY SEXY CANCER (obscure book/documentary reference).

In other news, Phil is back in Philly until Monday working, spending time with family and trying to keep our cats from going completely feral (don't worry, they are WELL taken care of. THANK YOU Peggy and Laurie and Paul and Maggie and everyone else who has been hangin' with them!). Mom is back down here with me after a restful two weeks home and Dad is flying tomorrow night to celebrate his birthday:) Me? Besides trying to manage the puff and being genetically male (still gross), I've been going to yoga classes at MDA, doing pilates on my bedroom floor (dude, that shit is hard!) and reading. Reading everything. Readingreadingreading. Tomorrow I'm going to post a crap-load of links to articles and blogs and books that I think are supercool. Because you care:)

Also, and this is probably the most important part of this post, there is a huge wave of gratitude and thanks from Phil and I to a whole lot of people . To PenTech Health and to my friends and colleagues at Haverford and to two dear friends C and K and a slew of other friends and family: Thank you. Thank you for your support and generosity and love and cards and emails and texts and Facebook posts and hours on Skype. For everything. You lift us up and make this whole thing so much softer. From my heart to yours. Gratitude. Forever gratitude.

Much love y'all. Only 38 more days!!! (38 bottles of HARD CIDER! yUmmmm!)

8 comments:

  1. Laura you keep it so real, thanks! Missing you like whoa, xoxoh!

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  2. Good to see/read you (hmm, that doesn't sound right) again! The tidbit about your blood type changing is quite cool! I'm dressing up tomorrow (nothing cool, just a witch), but it made me think of your costume from two years ago....gum underneath a shoe!! Haha!

    Happy Halloween-ish thoughts,
    Julie

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  3. Hey girl!!! Love you. Miss you. Think you kick serious ass.

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  4. Hey Laur....you are still beautiful moon face and all:-) Hang in there. Miss ya and think of you daily. Sending good vibes your way! xoxo Christie

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  5. Laura, you are beautiful inside and out - puffy and all! You are an inspiration to anyone who comes in contact with you. 38 days to go - HOOTIE DAMN HOO is all I have to say. Have a great weekend with your dad. Oh yeah - and also, yes, I too think you kick some serious ass. xoxoxo CAL

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  6. ass kicker! (and is it just me, or are the "mundane medical details" SO NOT MUNDANE?) i'm a geek with this stuff, fascinated by each step, so THANKS for sharing and like justicia said, "keepin' it real". love you, miss you, can't wait for the next 38 days to pass!
    xo
    k

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  7. Laura: Just read your latest blog. This was just what we have all been waiting for - dull, mundane, boring test results. BEAUTIFUL. Keep it up. Can't wait to see you. Love you, Nan

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  8. Laura, you don't even know me but we have mutual friends (Amanda and Jeannie) ~

    You are beautiful. You inspire me. Keep on keeping on, lovely! I am rooting for you, you are on my heart.

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