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 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!)

Monday, October 18, 2010

A touching thing happened on the way to the donut shop

Yesterday morning, a simple run to the local (famed) donut place, brought with it a gift of hope and kinship and gratitude.

Whenever we go out in public, I strap on my mask. That darn thing elicits some of the most interesting responses from people who see it.  Many people don't notice, either they are used to it around here or don't care. Some people do a double take (it's cool, I would too before all this). Some people lose their minds, freeze, and stare wide eyed and some have been known to actively get away from me, and in an (ahem) less than subtle way (BOOOGIE BOOOOGIE!). Once, there were a pair of very 'gussied up' young women who walked veeeeery slowly around a display of stationary I was looking at, eyes glued to me and whispering to each other. Nice.  Kids, for obvious reasons, usually do the freezing and staring while loudly asking their parents questions. One of the best Mom answers was "it helps her breathe, sweetie". Good one:).   The mask is a weird thing, I'll admit. The thing that people who freak out are probably thinking? Something along the lines of: "What does she have that she's trying to keep from giving to ME?!".  Swine-flu-media-panic-hangover talk, I understand. In fact, I understand all of the reactions, but sometimes I just wish that someone would ask about it. Well, yesterday morning, that wish was granted in a very special way.

P and I stumbled into the donut place (Shipley's, if you're interested), which was as appropriately busy as a donut shop should be on a Sunday morning in the South (read: not. everyone else was in church). There were only two people sitting at the tables around the edge of the store, a young Mom and her daughter, who was maybe 5 years old. My ears caught, just for a split second, the little girl start to say something to her mom like: "Mom she looks like...." and then her arm raised to point in my direction. I just turned my body slightly and let it go, she's a kid after all. Anyway: MMMMM DONUTS. Well,  just as P and I were paying for our treats, I feel a light tap on my arm and turn to see the Mom and daughter standing next to us, looking, well, emotional. Mom says this:

"Excuse me, are you going through cancer treatment?" My breath caught, "Yes". When I turned to face her completely she was CLEARLY very emotional about this exchange, sort of nervous but really really wanted to talk to me.  Then, she says this: "My daughter, this is my daughter (motions to the little girl who is now twirling- not kidding -twirling in circles next to us) saw you when you came in and said 'Mom she looks like you did last year!". GULP. The woman goes on to say: "I went through treatment last year, I finished my last surgery almost a year ago and I remember wearing the mask everywhere. Can I ask what kind of cancer you are being treated for?" I answered: "Well, I had leukemia but then two months ago I had a bone marrow transplant". She says: "Wow, well, you look great. Hey, your hair will come back. Mine came back really curly, it was never curly before. Look! I have to pile mine on my head in this crazy Edwardian hairdo now!(It wasn't crazy, it was actually very pretty, well, SHE was very pretty.) Good luck with everything, really you'll be just fine". Then, as she turned to leave, I barely got out: "Thank you!!! You too! You look great! before she booked it out the door.

So, through the universe, to that woman:

Thank you, woman and daughter. Thank you for reaching out. Thank you for being the kind of courageous person that does. That is just so, so special and it was blessing to experience your courage. I can't imagine what it felt like for you to come up to me, it looked like you were pretty emotional about it. I can't imagine what you went through in your treatment, what your daughter felt going through whatever it was with you. If you have a significant other, I can't imagine what it was like for them. I can't imagine how horrible it is that your daughter has those images of her mom going through treatment. I'm sorry that I didn't have the presence of mind to ask you what your diagnosis was. What was it? You really did look amazing and healthy. Something tells me that you are one hell of a fighter. Thank you also for making me step outside of the Laura-bubble for a moment and making me see that others reaction to my appearance is very personal to them, I can never know what someone else has been through that they are seeing reflected in me. It's not about me. Please, universe, send that woman and her daughter and their family love and blessings and gratitude from my heart. Her gesture meant so much more than she'll ever know.

Much love.

Saturday, October 16, 2010

50 Days

50 bottles of beer on the wall. 50 glasses of champagne (maybe we'll save the champagne for day 100:)).

It's been 50 days. Halfway to the big milestone. Halfway home. Nearly two months since a stranger saved my life. Amazing.

Phil and I spent a GORGEOUSLY NORMAL day together. Slept late. Went to the gym. Did laundry and cleaned.  Napped. Watched the Phillies. It was boring and perfect. Boring is the best kind of day around here. The most excitement today saw was the big bunch of balloons (one is shaped like a giant champagne bottle) Phil lovingly surprised me with (balloons turn me into a giddy five year old, they are just so effing joyful) and the splash of makeup and pink wig I wore to dinner.

We ended the day with a quiet, candlelit dinner where we talked about what our lives will be like in 50 years. 50 years. Our children. Grandchildren. Home. Where we've been by then. Who we'll be. We should do this more often.

50 days. My. God.

Much love:)

Thursday, October 14, 2010

Roller coaster

Lately, it's been hard to tell if my wildly fluctuating emotional state is because of the trillion drugs I'm on, the stress of all of this or because I'm actually a fucking nut. Up and down. High and low. Flying on hope and love or drowning in sadness and frustration. Sometimes, I start the day agitated, like actually agitated, as in all of the molecules of my body are jiving and bumping against each other in competition to be the most annoying, throwing me into irrational irritation with every move P makes (have I mentioned he's a bloody saint?), with even myself. By the end of the day, I'm serene and bubbling with love for my husband and joy for life and just want to melt into a puddle of thankfulness and gooey love-dovey goop. Some days it goes the other way.

Yesterday, I lost my proverbial marbles. Gone. lostmyshit. It was like everything just stacked on my shoulders at once and it was all I could do to stay standing (which I didn't do, I dissolved into a puddle of times). Nothing catastrophic happened. On the contrary, the last few days have been filled with stellar news, but there was enough, just enough, that I just couldn't fucking take it. It was about control. No secret THAT issue is...well, an issue. Blogged about it extensively before. But yesterday, all I wanted was some fucking control and a FUCKING BREAK. It started with being frustrated that my ATC appointment was two hours earlier than usual. I like sleeping. Sleeping is fucking hard. I don't like things that make me change my delicate sleep pattern. In clinic the APN said that the neuropathy in my hands and feet that has been annoying the everyloving shit out of me for the last two weeks may be permanent. Or not. They don't know. (yeah, yeah positive though "MIGHT BE". still really hard to hear).  But it can be permanent especially in patients who have had the drugs I've had. There are THOUSANDS of patients, survivors, living with this (honestly) minor complication, but these are my hands and feet. My life. Yoga, music. You need your hands and feet to function comfortable. Let's leave this at: I got really FUCKED UP about the idea of living with this.  Really fucked up. My muscles have all melted away (this is not hyperbole) from the steroids. I mentioned this before, but now it's worse and I'm having a much harder time coping with this drastic change in my body than I did with my hair. I'm unable to stand up from crouching without considerable effort. I cannot walk up every other step, hell, I can't walk up BIG stairs. I can wrap my hands around my thigh and touch fingers. My knees hurt down to the bone. But my stupid cheeks are puffy (steroids, shrug). It's devastating and adding even the REMOTE thought of permanent tingling and burning to this makes my chest tighten in sadness and anger. I'm sure I'll come to terms with this. Muscle is meant to be rebuilt, nerves heal, but this, THIS is literally breaking my heart and forcing me to completely re-evaluate my body image. What a great thing to have to do while uh...completely re-evaluating your body image anyway.

Then, after talking to endocrine (I have to call them every time my steroid gets adjusted because it messes with my insulin dose), it was suggested that I add a small dose (read: ANOTHER INJECTION) if I have a carb snack between meals just to keep my sugars more even. So stupid to get jacked about, right? I know. This is keeping me healthy. But there was something in losing the control (see a theme?) of popping a few crackers if I want them instead of opting for something without a carb (now I have to think about my snacking- have I mentioned I'm on t-rex steroids?) that irked me even more.

After clinic, I planned to go to an exercise class at the Place of Wellness (Yoga/Nia Body Energizer, it's called) so I hauled myself from clinic, rushed across the skybridge (the Place of Wellness is in another building about a half mile away via bridge- there are shuttles) and thought I made it in time to register the required 10 minutes before.  EXCEPT, get this, EXCEPT: All the afternoon classes were canceled. For no reason other than there was no staff to sit at the front desk. Canceled without notice. Well, fuck.

SO now, P is back at the apartment working remotely so we can pay our bills, having just spent a few hours taking a class so that he can care for my port site, I'm stuck at the other clinic, we're waiting on a prescription refill back on the ATC floor, traffic is a mess so P can't come get me and I'M PISSED. I huffed my way back across the skybridge (refusing to take the shuttle because now I'm not going to an exercise class, and I'm gonna WORK MY LEGS AND LUNGS DAMMIT) and plop myself in a chair with my book to wait for my prescription. And stewed. And stewed. And stewed. In self-pity, exhaustion and anger. All I could think about was how badly I wanted to say 'fuck this' and walk away from everything, going back to my old life, my old body (which was STRONG and didn't HURT, not boney, flabby and achy) and forget any of this ever happened. How I wanted a break, even just for an hour, from this. That I was hoping to escape in that class but then had no control over it being canceled.

In a little while, P came and got me, the prescription was picked up and we made our way back to the apartment. There? I locked myself in our bedroom and sobbed. SOBBED. Settled. SOBBED. And then sat up and took a DEEP FUCKING BREATH. No, I threw a water bottle against the wall, then I took a DEEP FUCKING BREATH. A few days ago I went to an Aromatherapy class where we were given vials of essential oils (like, REALLY NICE essential oils) to help with side effects. I chose a (VERY NICE) lavender oil. SO, I grabbed that bottle, wiffed and closed my eyes, cried some more, and tried to reset my gears. Three hours I sat curled up in there. P was very patient with the whole thing, and I felt terrible because we have such precious time together.  I painted my toe nails (I can control that!). I wrote some letters. I watched an old SNL (yeah, and cried through a lot of this). Then I emerged, curled into a chair with P (cried) and felt better. Calm. Reset. P and I had a lovely dinner together and I ended the day serene, next to my husband, where I belong. Not wallowing in self pity with a bottle of oil. And nail polish.

Today?  Top of the roller coaster. Great. Fucking. Day. It's like yesterday never happened (oh, but it did). Woke up so energized that I stripped the bed and did laundry (hilarious, I assure you), got gussied up for clinic, and felt glorious. Luminous. Went to Starbucks for one of those horrible frappachino things (if you saw my FB post, yes some college kid literally freaked when he saw my scarfed/masked self, moron) and we made our way up to clinic. P took and passed the test to change my dressing on my port (seriously, I CAN NOT imagine having to do that- I would cry every time.  I don't know how my Mom and P do it). Oh HEY, so then we saw Dr. De Lima who basically said that I'm doing 'remarkably well'. My numbers are fantastic, my steroids are being cut again (which means that the GVHD is completely under control), the CMV virus that I tested positive for (I think I mentioned that) is gone, yeah GONE. Starting next week I only have to come to clinic twice a week. They're incredibly impressed with my progress (I will NEVER get sick of hearing 'NO EVIDENCE OF DISEASE') and all of this I got share with my husband. Standing my be side. Hugging me. More than words.

This is a roller coaster. It's trying. It's FUCKING HARD and there is NO HANDBOOK. Having a husband that is patient and kind and loving is a blessing (is there a stronger word than that?) that I can't even put into words. Having days that test us, that test me and my spirit which of course means us and OUR spirits, are like having days that add thousands of years to our marriage. To our lives. It feels like we've lived so long. Been together so long, it's hard to believe that all of this is going to give us even more years. How lucky are we? How lucky are we to have families and friends who are carrying us through this? To have strangers reaching out with love and support? It makes those low days like yesterday easier to bear. To wake up the next day, take a breath, remember what's important and say "Ok. Let's try this again. GO".

Monday, October 11, 2010

Cancery men, stop being gross and lazy

This is the dumbest thing ever to post on my blog considering that NO ONE that this rant applies to will read it, but dammit, I'm posting this anyway. Because I'm mad. And grossed out. And I have the power to post this Hey, maybe some of the dudes who read this will learn something. Who the hell knows.

What's my major malfunction? Well: I am SO FUCKING SICK of having to put down the fucking toilet seat in the bathrooms in ATC. 

What. The. HELL. IS THAT ABOUT! Why isn't there a sign that says "Men: Please put the toilet seat down". There are FOUR "Call don't fall" signs. Four. In one bathroom. What about "Call when you fall in the toilet". Why am I even suggesting a fucking sign? Shouldn't they just know this? Isn't that like, basic man bathroom routine that you learn as a child? Guys? REALLY?

The fact that the bathrooms here are co-ed grosses me out anyway (and there are like, 5 of them for this quarter floor, so it doesn't even make sense) and this toilet seat thing makes me freak every time I see it. We're all immunocompromised. All of us. I don't care if you're not, guy in the room next to me, I've decided that you are because I AM and therefore EVERYONE IS. Or something rational like that. This means that I can get infections VERY EASILY. Things that give people infections? TOUCHING TOILET SEATS THAT OTHER PEOPLE HAVE GROSSED ALL OVER. Or not. I don't even know if you actually can. It makes sense, plus we're all being pumped full of toxins and THAT can't be OK either.  But it's FUCKING GROSS.

Seriously, MD Anderson, this is the dumbest thing ever. Really? Picture this: I'm wearing a face mask so no one coughs on me on the way to the bathroom but I have to use paper towels to put a FUCKING TOILET SEAT DOWN when I get there or practice advanced yoga to get my foot up to put the damn thing down without losing my flip flop in the TOILET. REALLY?!? Now there's gross on my flip flop. Fuck.

As soon as my nurse (who happens to be the charge nurse today...what luck! Girlfriend doesn't know what's comin') comes to unhook me from my infusion you bet your BUTT I'm saying something. I wonder who I can call about this. Maybe the CEO of the hospital. That would be hilarious... Get ready whoever you are, Laura's steroidal and GROSSED OUT.


Saturday, October 9, 2010

Organization, Glamification and Cupcakes

So, I've been an iPhone photo junky the last few's just that I've been missing the step of actually sharing what I'm taking pictures of... oops. After going through them to e-mail them to myself so they could be posted, I realized (with a large amount of amusement) that they fall into three distinct categories: Organization, Glamification (is that a word? whatever if Kimora can make up a word, so can I) and Cupcakes (well, cake too). Ah, the simple life of a BMT patient :) There are a billion pictures, this post is going to be very long. I love you for reading and looking at my ridiculous reversion to 12 year old girl status and obsessive compulsive teachery-ness.

The Great (steroid-fuled) Organization-fest of 2010
Listing all of my meds, sugar readings, appointments, dose changes, and to-dos.  There is just no way to stay on top of all of this without this big reminder, it would feel like drowning. Also, now, Mom and I are completely on the same page about every appointment and especially my meds, which are adjusted almost daily. Check out the pile of piles cases behind my head, it's epic.  Oh, and I was so flipping happy that I could hold this crouching position (comfortably?) while doing may take my hair but you can't take my MALASANA!

The finished product a few days ago, now it's packed even further. The shelves below The BOARD (sounds official, right?) serve to hold all of my flushes for my IV, my 'diabeetus' testing supplies, a board that tracks the dressing changes/cap changes/home flushes on my CVC, and of course a supply of masks and gloves to protect me from the hacking masses. There are two more closets FILLED with similar supplies in back-up. Oh, and that orange bottle is the magic Megace, which thank goodness I haven't needed at all since being 'roided up like a prize fighter.

Glamification and Pinkification
As I mentioned in my vlog a week or so ago, something snapped in my brain that gave me the hell-fire driven compulsion to turn my bedroom into a pink dorm room. NOW. Poor Mom just wanted to get me out of the hospital, grab dinner and go home to watch 30 Rock the night I got discharged but I had to go and have a near breakdown (not exaggerating, my heart was pounding and I thought I was going to lose my mind) over coming home to the decor in that room as it was. (Trust that you would too. Just, trust.) There was something about the thought of walking in there, after two weeks in the hospital surrounded by, well, ugly, and seeing more ugly, or shall I say, things I DID NOT CHOOSE, that made me mental. So, off to Target we went. Even in college, when most girls do the super-girly room decoration thing, my room was in sophisticated neutrals with posters I bought in Paris on the walls (because I'm boring). My first apartment alone? Same thing. Home with Phil? Martha Stewart bedroom colors and some sort of boho thing every where else. Giant pink flowers? Never EVER in my palette. Until now:) AND I FUCKING LOVE IT. Plus Target had EVERYTHING dorm-related on extreme discount so this cost like, nothing, to accomplish. Oh, and because of Halloween there were pink skulls available in abundance.
Thank you to John and Karen Sellman for the puppet-y pink blanket, it ROCKS. The reflection in this pictures from the mirror may not show this but, both bedside laps were atrocious so I wrapped them in bright scarves. Crafty crafty!
Wigs and skulls. Yes, they light up. No, I haven't gotten an extension cord long enough yet, but TRUST that I will.

Tina. Hot pink and hangs out on my sink. Love her.
So relaxing...and pink:) Those prayer flags on the window are one of my favorite things I brought from home. One has hand painted images of the Sacred Heart and the other has Ganesha and Hanuman. Etsy all the way y'all. 
Scarves of many colors and more stories, especially loving that big white one on the left:) The stuffed cat is from my Aunt Chris and softens the home sickness for my fuzzballs. She also wears my headbands (yes, headbands. FOR MY BALD HEAD WITH A WIG!)
Check out that morning view. That's the patio that looks out over the 'bayou' and some beautiful trees. Good stuff:)
If you've ever lived with me you know why this pictures is hilarious. I am NOT a master closet organizer. Steroids are wonder drugs.

Such simple, indulgent gems. At home I would NEVER buy cupcakes from a bakery or (gasp) the grocery store (but there is something DIVINE about a store-bought cupcake delivered after a birthday party to my classroom, that's just an extra kind of magic), always ALWAYS opting to make my own from scratch with crazy ingredients. Also, and Philly folks help me out here, I don't know of any cupcake places at home. No, really, besides the Cupcake Lady truck, are there any??? Whatever, Houston is filled with cupcakes and it seems that everyone here has an opinion about who makes the best. Me? They are all amazing and I eat them with gusto
First up, with extra special gratitude and thanks, cupcakes from Crave Bakery from Tim and Jeannie Bickhart delivered on my birthday. Thank you, Bickhart family, they were DELICIOUS and that was a really amazing and thoughtful surprise:) 
Birthday Cupcakes from Mom and Dad from Celebrity Bakery. Drool. 
Dad getting creative so I could have a "candle" on my Birthday cupcake.
Though not a cupcake, this is pretty cool. The hospital sent a Birthday Cake to my room. We didn't try it because we had BOXES of other (more appetizing) cupcakes available, but I think this is a great touch. Thanks MDA:) Oh, see those two little white bottles sitting behind the cake? Those are 'magic mouthwash' which contains lidocaine. I had GVHD in my mouth on my birthday and everything hurt so I requested the stuff so I could actually enjoy the goodies.
Celebrity Bakery on the day I got that FUCKING AWESOME news (ya hear about that?). Can't have champagne but cupcakes rock just as much. Seriously, doesn't this place look like a dream? Don't you just want to crawl into that case? I heard that Crave is just as cool.
"My Transplant Worked" celebration cupcake. Hells. Yeah. Livin' it up with that milk! (I ate two actually...don't think I'm gluttonous enough to actually post THAT picture...)
Crave Bakery cupcakes Phil picked up the morning I ended up back in the hospital. Unfortunately I was really sick (and kind of didn't notice it?) so I don't remember which ones I liked other than that chocolate one in the lower left corner. THAT one I remember...:)
High Roller Suite: One Random Shot
As part of the post-BMT process, I'm required to go to the Ambulatory Treatment Center (ATC) several times a week for blood work, appointments with my Doctor, APN, PharmD and Endocrinologist. Basically, they take my labs and then stick me in a hospital room (not actually in the hospital) for three or four hours to infuse me with whatever I need. Most of the rooms are the same, small with a bed, TV and chair but SOME of the rooms are awesome. These are the high-roller suites. They are on the front of the Main building overlooking the street with HUGE windows. They are also twice the size of the other rooms. There is one in particular that I only lucked out enough once to get: the corner room. Here I am in the "corner room" (rumor has it that you can request this room...I think I'll let someone else enjoy it though, I've got enough blessin' happening).
BALLA! Special thanks to Shawn and Justicia for the KICK ASS pink skull scarf:) XO
Much Love:)

Friday, October 8, 2010

Coming the mat

In a big, sunny room. In a huge, new hospital. In a face mask with tubes hanging out of my chest....

I came home.

This afternoon at the Place of....Wellness, the patient holistic health center, I attended my first yoga class  in more than two months. Since August 16th to be exact. My first class since transplant. As a genetically new human. As a newborn. What a friggin' metaphor.

Because of the high dose of steroid that I am on, there has been some significant loss in muscle mass everywhere on my body, particularly in my legs, which had me pretty freaked out about going to this class. I was afraid of feeling weak, of shaking, of not being able to even complete the class. All the logic in the world says that it shouldn't matter what my practice is like now, how it stacks up to my pre-transplant practice. That yoga is not about the depth of my knee bend or length of time I can hold warrior I, I know this with every fiber of my being. Yoga is in the being there, the intention. But the ego is an amazing thing and that fear and self-consciousness was still there.  Until class started.

The instructor was fantastic, gentle, skilled, his sequencing was perfect, like it was made for my body today. Maybe it was. Maybe the universe really is that amazing. As if I'm that important.

Yes, my legs shook, but they were still stronger than I expected. They held me, supported me and (this was really amazing) knew where to go. Everything knew where to go. My arms swept in familiar ways, my feet found themselves in the right place, my hips went square when the should and my arms held steady. My brain quieted,  my heart sang and my breathing was more labored than I've ever felt before, but cleansing and refreshing.  It was astonishing. Moments strung together that I will remember for the rest of my life. A re-birth after a re-birth. A fun fact? I've become more flexible, which probably has something to do with the melted away muscle, but it was a weird surprise.

The experience of practicing next to other patients, some hooked to pumps, some bald like me (though I was the only one in a mask, a yoga experience like non other, talk about being aware of your breath!), all in deep concentration, brought an energy to the room that I've never felt in a class or workshop before. It was more concentrated, more intention filled than the most advanced class I've ever attended. Everyone in there literally fighting for their lives, and taking control of their bodies. Breathtaking.

After class I stopped to thank the instructor, a young man named Cathal only a touch older than myself, who just shone.  So, so bright. After the typical pleasantries he said something that nearly made my legs fall out from under me: he said "You have a beautiful practice". Those words, so ego driven, so meaningless in reality, filled me with such joy I felt sort of guilty. Like I said, this is ego, it doesn't matter what my practice looks like now, but hearing that was exactly what I needed. My heart knows that my practice will return, that it has never actually left, but hearing it was edifying. So I'm going to go with it. And soak it up and thank Cathal, the universe and every teacher I've ever had for this feeling because it's a fucking blessing and I'm so, so lucky to have this practice.

Phil will be here in a few hours, which of course serves to intensify my gloriously blessed feeling. God, this distance has been hard but like the rest of it, there are blessings lurking in here. Our relationship is strong, solid and filled with love. He is an amazing man and I can't wait to spend the rest of our lives together. I'll spend the next few hours waiting for the water to be turned back on (there was some water main work being done out front) so I can shower and have clean fresh clothes to greet the hubs in, and having a magnesium and caspofungen infusion in the comfort of my living room.

Much love to Philly today and spending lots of time thinking about all of you having fun at Do Yoga Philly! Been working on a photo-packed post for a few days and I seriously can't wait to share it when I finally manage to write enough witty captions.

Much, much grateful love.

Tuesday, October 5, 2010

Sunday, October 3, 2010

Betty White needs to step off

Betty White is ruining my night's sleep. Seriously, I'm ready to cut a bitch. She is haunting my dreams and it's really creeping me out. She just keeps showing up and talking about my 'diabeetus testing supplies' (you know, like the commercial with that guy) and always around 4 ish in the morning, and fucking up my night. I don't know if this phenomenon is due to the copious number of pills and injections I'm pummeling my body with now (30 + pills and four shots of insulin...and that whole new immune system thing) or if it's some momentary weirdness that will pass as I get more comfortable with obsessing over my blood sugar. Or if Betty White just really hates me.

No idea. It's fucking strange.

Last night I let my teacher-self roam free in a desperate attempt to organize this mountain of medical-dome that has come crashing down into my life. There is a color-coded giant white board involved...and magnets..and stickies...and colored dry erase pens...and a meticulously organized shelf. Oh, lord, I have to post pictures. In all honesty, it felt AWESOME to force my color-coded teachery control all over this place. Side note: my friend Nick would be horrified at the number of sharps I have to have handy now...yowza.

Other than the remaining Golden Girl trippin' up my game, I've been feeling really awesome since being discharged. Mostly because I'm all healed up and also because the mastodon steroids that I'm on make me feel like a million bucks (except for your nonsense, Betty). ATC appointments were smartly moved to noon (sleepin' in AND drinkin' coffee time!!) and I've been having a fucking glorious time getting dolled up name is Laura and I have become a shopaholic (Forever21 should pay ME now).

Oh, and my appetite is INSANE. Like, I woke up at 2:45am the other night and ate an entire box of Cheeze-itz, insane. Last night I inhaled Thai food, as in LOTS OF THAI FOOD (this was damn good Thai too...and now I'm thinking about that leftover curry....)and then washed it down with french fries. FRENCH FRIES. This morning Mom made me pancakes that I covered in Nutella and bananas. GAH, Who am I? A prednisone monster, that's who I am. Wanna hear the goofiest part about it? I've lost weight. I know, you should hate me. No moon face or bloat (been there, done that, my BFFs bridal shower pictures bare the evidence)  Apparently it has something to do with having high blood sugar as well but ya know what, it's kinda funny. The only bummer really is that the steroids have literally made the muscles in my legs melt away. Melt. Away. In just a few days. My legs are all scrawny and the muscle mass I spend months (nay! years!) putting there is nearly gone...and I can feel it.  Like I can feel that there isn't power there anymore. My calves are weak, my quads have shrunk, my ass is no longer a rockin' toned ass (ok, may be over exaggerating the before picture...), but it's noticeable. My arms have weakened a bit too which resulted in one hell of a determined half hour of putting up a new (pink, duh) shower curtain and a lot of cursing. The leg muscle thing  makes my knees hurt, which haven't hurt in years since I began working on strengthening my legs, so yesterday Mom and I schlepped over to a runner's store and got me some new kicks so I can go to the gym at the apartment complex and do weights and resistance and not be a veal ass. I find shopping in a mask, gloves, CVC hanging out and wig (yes!!! I was wearing a wig, I really will post pictures) highly amusing. Especially when I accidentally wear a low cut shirt too...that poor sales clerk did not know what to do with himself. Bless his heart (and my rack;) ).

But mostly, everything is super cool down here, the weather is gorgeous, that damn GVHD is almost completely gone, I don't think my liver is going to fall out today (yay!) and I'm really excited to see one Mr. John Sellman tomorrow morning:)

The last few weeks have been a whirlwind, I feel like I lost nearly the whole month of September, and there are many Thank You's that are long overdue to many of you out there. Please know that your gifts and kindness were recieved and that I am so thankful and grateful, but that I also wish to extend a proper thank you to you as well. Proper, heartfelt thank yous are forthcoming:)

Hoping for more kick ass news in the next couple of days (and the disappearance of one Ms. Betty White- seriously, if you're reading this, STEP OFF BITCH) and also to SEEING PHIL ON FRIDAY!!! :) XOXOXOXOXO. Also thinking of hoping on Ustream again this week to touch base, and do some goofing around.

Heard that Haverford Township Day was awesome, and that this weekend was the first of Justicia's Align and Flow, hoping all who participated in..all..had a wonderful weekend:)  BTW Philly folks, how are those trees looking? God I miss all of you so much. Much Love and gratitude and someone tell Betty White to fuck off. <3

Saturday, October 2, 2010

The best 100% I could ever score on a test

Another vlog, not becoming a trend, just an important thing:) Sorry it got a touch cut off at the end get the important shtuff:)

Can't wait to show you around my pretty-pretty-princess room:)

Oh my lord, so MUCH LOVE! xoxo