Totally Urgent Request that Has Nothing to do With Cancer

I am posting this URGENT REQUEST on behalf of my sister, Liz Slavin, on the off chance that someone reading this can help:

Phantom Regiment Drum & Bugle Corps is in desperate need of a housing site in the Philadelphia/South Jersey area for August 4 (late evening)-7(early afternoon). They are well known for stellar site maintenance and care and will happily provide necessary recommendations.  If possible, they need a space with two fields (turf or natural, no lines needed, they will apply and clean up their own lines if there are none), space to park several tour buses, showers and an indoor open area for sleeping/rehearsal (gym/commons/hallways ANYTHING). 

They will make some noise on the field, but it's a damn fine noise to listen to:) They have shared space with athletic teams and summer school programs and are very nice neighbors!

If you know of a space or have access to a space, please contact:  

Allan Dekko at 702-325-5527 or dekko@regiment.org

THANK YOU!!!!

For more information about Phantom Regiment, please visit http://www.regiment.org/ 

Today - 365

One year ago today, July 27th, 2010, I received the life-changing phone call that a donor had been confirmed and that my transplant date was set. All of us have those personal anniversaries, the days when something significant happened (maybe only to you, maybe to those around you) and you can recall with unnerving clarity everything about that day. This day impacted my husband, family and friends, not just me. The goings-on of this day one year ago are more clear in my mind than days only a few weeks ago. Where I was, who I was with, what we were doing. I remember sitting in the back of my mother-in-law's car receiving that phone call. Feeling a mind boggling combination of extreme fear and hopeful excitement.  Calling my parents. Calling Phil. Calling the long list of friends and family. Writing here. Crying.

One year ago my donor-angel confirmed that YES, he would donate his marrow to me, a stranger, and confirmed the date of his surgery (for new readers: he consented to a traditional marrow extraction via 100 holes in his pelvic bone- 50 on each side- as opposed to apheresis stem cell extraction via blood filtering), the date which would give me life back. Or, perhaps, gave me a new life entirely.

Over the last 11 months I've thought quite a bit (understatement of the century) about this man and his decision. About his family. There are moments when the reality of his gift, and the sacrifices he and his loved ones made to give me this gift, become overwhelmingly clear. I would be lying if I didn't also share that there are many times when I simply cannot think about it. Can't take it in. That I feel unworthy of such a sacrifice from a stranger and that I am absolutely indebted to this man and the universe which set this all in motion. Embarrassed, almost.  Yeah, I know, that sounds bizarre. Why would I feel embarrassed about my donor's choice? Well, because, as I said,  I don't feel worthy of this kind of gift. Honestly, most of the time I feel incredibly uncomfortable with the generosity and kindness of those in my life, of which P and I have experienced to the max these last few years. I feel so extremely grateful that it aches inside. Why was I given a second chance? Why do I have the honor of calling these people friends and family? Why have we been afforded such love and kindness? Why me and not someone else in my place?

There are many times I've written before asking the question 'Why me?' and curtly answered, 'Why not me'. Well, I'm not certain that this is the correct answer here. In this circumstance, I have no answer, only the intense feeling of obligation to pay this forward. That maybe, just maybe, this is a call for me to dedicate myself to supporting others on this terrible journey.  Some of those 'others', I am devastatingly sad to say, are friends. More importantly though, I hope to give support to those I will never know.

As it stands, my Team FD has, with the stunning generosity of nearly twenty separate donors, exceeded the initial goal of sending one FDer to their first camp. That sum was $1,000. Today, total donations stand at $1,550. Amazing. For my part, with my steadily healing feet firmly under me, I have completed 300 Sun Salutations. This affords me about five weeks to reach my goal of performing 1,000 Sun Salutations before Labor Day 2011. I was never great with math in school so...let's just say I'll have some darn impressive upper arm muscles to debut at work...:)

Thank you, Donor.  I've hardly the words to express what today feels like. I hope with all my being that in a month's time I will be able to express my gratitude in person. Tears, I think, can say so much more than words on a page (or computer screen, as it were).

Much love:)

hyperpyrexia

I think that word has something to do with a dangerous rise in body temperature but I'm too fucking hot to look it up. What I do know is that when I plugged 'heat related delirium' into my search bar, that's the word that Google spat out. So sue me for being lazy, I think the sun ate me today (if you live...well, apparently anywhere in the US you're probably feeling the same way).

Delirium is precisely the word I would, if pressed, apply to today.

This morning P and I drove swam through the swamp air to UPenn for my 11 month (holy shit) check up with Dr. Porter. It really tells me something when THAT isn't the most interesting part of my day. It tells me that the universe works in beautiful and completely ridiculous ways.

Let's get the boring stuff out of the way: all is well on the bone marrow front (fist pump). My counts are relatively stable, I'm being taken down to a minuscule dose of steroid (1mg every third day) and taken completely off of Detrol (turns out my episode last week was not that virus, just a simple bladder infection) and tapered down significantly on a mouthful of other drugs. Next Friday I will receive (after some intense negotiation) all of my "1 Year" immunizations, the same ones a baby would receive, and another infusion of IViG to boost me up. My feet are healing up and I have enough hair to make an actual hairstyle (OK, so Dr. Porter didn't tell me that last one).

Now for the interesting stuff. A deeply loved and respected friend, someone who has been meaningful in P's life and his family's lives (and for a long time mine too) is now receiving cancer treatment at UPenn and happened to be having an infusion this afternoon, just after my appointment ended. Because this person is like a love magnet, powerfully drawing you in with their positive and beautiful light, not to mention just a damn good time to be around, I asked if I may stick around and keep them company. They accepted and, my god, what a blessing this turned out to be. One of the greatest lessons I've learned over the last few years is that experience and knowledge is always a choice. Things can happen to you, or you can experience them. You can see things, or you can open your eyes and heart wide and take them in. Those that possess the greatest wealth are the ones who have done this and THESE are the people who have the most to teach. They teach in every moment, in the smallest and greatest ways.

  Sitting with this friend today and listening to them talk about their path, their outlook, their experiences, watching them laugh while poison (a heeling poison, somehow) is pumped into them, smile with family members and be completely open, left me absolutely in awe. This person is the embodiment of both ferocious fight and absolute surrender. They are stunning in so many ways and have taught a thousand lessons in only a few moments. These hours spent sitting by them today are hours I will cherish forever and that I am honored to have been given the opportunity to experience them.  There were a few moments today, while listening to their stories, that I could feel their impact on my life, on how I want to live my life. That is...well, that is a damn special thing. Writing this last paragraph has me emotional and feeling protective of these memories, so I may stop here.

To wrap up this post, because this year has been too effing serious to leave blog posts on an emotional note all the time (Dancing Dror being the exception...though I'm fairly serious about that...), I will share with you the mindboink that happened while hanging out in a waiting room today. Ready? No, I don't think you are. If you choose to skip this part, good. I'll let you know when to stop scrolling down. Read on if you dare.

I will first draw your attention to this picture:

"Laura, those are just chairs and some dude's legs, what's your damn problem?"

I WILL TELL YOU WHAT MY DAMN PROBLEM IS.

Notice, friends, the gentleman at the top right of this photograph (that is my left leg on the bottom). This gentleman, carrying a stack of papers, a bag of patient-y stuff (binders, pill bottles, magazines) and a few other random things, sat down a few seats away while I was waiting for my friend. He quickly struck up a conversation. Normal enough, yeah? Yeah. It became very clear VERY rapidly that he was thoroughly zonkered out of his mind on, what I presume to be, pain medication and this pain medication had the wonderful effect of lowering this man's inhibitions...significantly.

Sure, it started innocently enough. He informed me (the only person sitting within conversation range) of the various VERY TRUE conspiracy theories currently ruining the world. The standard stuff we all know about, delivered in a deluge of totally coherent sentences: something something Arabs something something 18th Century scrolls something Hitler mumble NIXON. No big deal. Although, he was really mad about Nixon. Look, I've spent my fair share of time whacked out on pain meds and this gentleman had a brand new PICC line in (and we were in a damn cancer center) so I'll totally understand all of this (I shared drunken college stories with my nurses on pain meds). However, friends, it is what happened next, or rather what I finally noticed on the empty chair next to him, that takes the crazycake.

On that chair, with his stack of papers, in the middle of a busy waiting room, on a sunny Friday in July, looking at first no more menacing than a hamster in a top-hat, was a blue-capped specimen cup. A blue-capped specimen cup unmistakably and containing this man's spunk. Yes, his jizz. Baby-batter. Sperm.

I'll wait right here while you process that.

Ok now? Good. Try as I might, I do not think that I managed not to react to this, though if I did, he didn't notice. He was far too angry about sidewalk chalk, bless his heart. So, you know, there it sat. There he sat. There I sat. The group on the other side of the room grew very quiet so clearly we were all in this together. At this point the good gods of the universe told him that the cup of goo would really punctuate his point (and after all, why wouldn't it) so he scooped it from its throne and began waving it around in his hand again as if it were a mere can of cola.  This is the point where I made the very important decision to take a super-stealth picture, because, well, basically it was all I could do at that moment. You're welcome. In fact, you can even play a really fucked up version of Where's Waldo, because it's in there, dare you to find it.

After some time of this (who knows how long, time tends to slow when these things are going on), a nurse RAN over (I think after his daughter/niece noticed his chosen presentation tool), snagged the cup and his paperwork and bolted away. He then mellowed out and started leering at the carpet. At about this time my friend showed up and I suppressed the memory until I could post it all over the internet. 

This photograph required the advanced iPhone technique of pretending to text message while actually taking a photo and not capturing this man's face or giving myself away and upsetting him. Please understand that I have an enormous amount of empathy for what this man was probably going through today BUT I can't make this shit up, people. Tarantino couldn't write this shit. That is life in the cancer center trenches y'all.


STOP SCROLLING IT'S SAFE NOW:)

On a completely different note I would like to send a big wave of love and positivity to Sarah D. down in Houston, who is twenty-some days post transplant and kicking butt. Much love to you, friend:) Also, a massive 'thank you' to the universe for the fact that my Nan is doing a-OK after a scary medical moment last week. Gratitude and love abounds.

Thank you, friends, for following with me through this journey and leaving some of the best encouragement and advice I've ever received.  The next month may prove to be exceptionally emotional as my first 're-birthday' approaches, mostly because I know the time when P and I can thank my donor in person is drawing closer. It's a breathtaking idea...

Much love and STAY COOL!

This is really important

UPDATE: I FIGURED IT OUT AND SUBMITTED. zomgicantwait.

If you are looking for a post with substance, this ain't it. But it is a post of awesome, so there's that.

 I just ordered THIS  (yes, it's a thing and yes it's real and yes it's amazing) and it may be the best $5 I've ever spent. Ever. Word to the wise: this is what happens when you spend excessive time alone, drugged up and on the internet. You have been warned (or encouraged).

BUT WHAT SHOULD I ASK HIM TO WRITE???

OMG please help me.  This is something which will be cherished forever and ever. And obviously posted here.



This is so MUCH LOVE

Didn't like the movie Groundhog Day...

Errr, hi.

Sorry, life, it seems, is really getting in the way of being sick these days. Instead of finishing posts here and sharing my nonsense with you, I've been out doing any number of things. Hanging in the Poconos, playing arcade games (remind me to tell you that I lose my BLOODY MIND over arcade games), buying rock climbing shoes,  rock climbing (oh yes, ROCK CLIMBING), hiking, taking belly dance, playing piano, squeezin' harmonium, going to baseball games, going to the movies (go see Horrible Bosses and Bad Teacher, like, now), going back to my classroom (HOORAY!!!) and generally having a damn good time.

Seems today, though, that the sick has crept back in. Now, I don't really want this to be a place of all "waaaah I had a crazy extreme thing happen to my body less than a year ago" BUT...well. That.

Remember that time I peed my bed in my fucking sleep? Yeah. Me too. Let's just say, for the sake of transparency, that I had to buy fucking Poise pads, start ANOTHER antibiotic and get a new Rx for Pyridium today. I'm over here praying to all things white cotton and holy that this is a simple UTI and not that motherhumping virus again. Bill Murray, keep your damn groundhog day. (In other news, how many people can say that they've written about Poise pads, wizzing the bed and Bill Murray in one paragraph? Methinks not many!)

Bonus fun: While rock climbing is effing baller fun, FD was AMAZING and I've been drooling over real estate in CO, this new little addiction has done one hell of a number on my toes. They're all red and swollen and ouchy, having never really healed correctly from when my feet swelled up inside of my rented climbing shoes at FD and then I climbed on them for like, five days.  It ain't pretty. Tomorrow, I get to visit a podiatrist first the first time in my life who also happens to be the first doctor in recent memory to make me wait more than 48 hours for an appointment (2 weeks. 2 WEEKS). I better be a foot model for Sally Hansen after this jawn.

Anyway. Sorry for the complain-fest, I'm just a bit miffed at feeling crappy again. Call me spoiled. Aside from being painful, these banged up feet have been keeping me from reasonably practicing yoga (not counting handstands, those don't hurt my toes!), most importantly my Sun Salutations. At the moment I'm stuck at just under 200 (192 to be precise) so I need these toes fixed fast!!  I would like to share, however, that I am crazy excited that my fellow FDer Rockstar Sissy has joined Team FD 1,000 Sun Salutations along with my good friend and partner in elementary education-related crime, Julie! So much gratitude you two:)! OH, have I mentioned that we have broken the $1,000 mark? 'Cause we have! Which means that there is a survivor or fighter that gets to attend a camp now!!!!! Only through the extreme generosity of donors can these programs exist, and this program is so, so special. A huge burst of love and gratitude to our donors for supporting us. We're not done yet! Maybe TWO campers can go....:)

Although I'm extremely pissed off (no pun intended) about being icky sicky again, there is one thing that happened today that I don't mind repeating over and over again. Today was P and my second wedding anniversary. He has been here with me through absolute hell. Loving, gentle, steadfast. Absolutely fulfilling his vows. He has told me I'm beautiful with no hair and tubes hanging out of my GvHD-ed body. He's endured countless flights back and fourth, weeks apart and alone, all of the same stresses and strains the I've been through. In many ways, much more. Without him this past unbearable year would have been impossible. He brings love, so much love, that it almost aches.  It is hard to believe that two years ago tonight we were married, kicking up our heels in the summer air with our nearest and dearest. Eight years ago he took me to my prom (we weren't dating...yet) at a hotel in the city, two years ago we spent our wedding night there, last night he brought me back and it was perfect. That was just the beginning of so many treasured memories, we have a lot of living yet to do, my love.

I love you, Phil. Now and always.