Thursday, June 24, 2010


As this school year came to a (kicking and screaming) close, and summer begins, I was reminded of a song that brings me back to summers in my childhood. I can remember my sister and brother and I in the back of our parent's old station wagon, heading down to the river house with this song blaring. My parents in the front seat belting out the words, Dad's eyes crinkling shut as he sings, Mom shaking her hair, the three of us in the back following suit. This is the best version I have ever seen.  Life does go on.

Tuesday, June 22, 2010


Gratitude is a powerful and humbling emotion. Necessary. Imperative even.

Today, I experienced gratitude at a level and in such intensity I was taken to my knees. Only once before have I felt this, and that experience was so personal and intense that I have chosen to keep it in my heart, because I lack the words to say what that experience meant. May this serve as an open note of gratitude (which is woefully inadequate). 

To those who have held P and I in the palms of your hearts:

Please forgive me for being unable to speak aloud my gratitude.  It was a selfish fear that if I opened my mouth to speak, took a breath even, that I would spill my heart onto the floor and never be able to tell you how full I am. You have said words that are burned into my soul. You have written words that will be kept for a lifetime. You have treated someone you have only known for a few weeks, or a few months, or a few years as if you have known them for a lifetime. You have given in ways that are beyond the description of generous: someone should write a thesaurus for the emotions of a cancer patient. "Into every life, a little rain must fall", you have been my umbrella, my lifeboat, even my water wings (you know, those floaty things) on days when you sensed I needed some silliness. To those who have stood by for years, before cancer, and after, you are the soil in which I stay my roots. You nourish, you sustain, you are rich of heart and your friendship is golden. To my family. How do I say thank you for giving me life and for being so constant in your support and love? I cannot. Nothing I could ever say, write, post on the internet could ever fully express how grateful I am for you, for all of you, for what you have done, for what you have given, for your support and love.

Thank you. From the depths of my heart. Thank you.

May I have the opportunity to repay you someday.

Monday, June 14, 2010

Blog and Ye Shall Receive, Part Deux : otherwise known as How I found out I'm one in a billion

We have a match!

Sorry, I couldn't think of a witty way into that announcement:).

 Seriously though, holy shit. Months of waiting, countless sleepless nights and it all comes down to this. The call came this afternoon, while I was in the car with my dearest friend, M. She showed all the exuberance I was too tired to show by karate kicking her way around her house a few moments later. Love her. Thanks, M.

We have a match:).

Evidently I have a rather unique tissue type and there was only ONE person in the world that was my match. One. I can actually say that I am truly one in a billion. "Clinically Proven". Fucking cool.

The kicker? That person was 'unavailable'. HA! Just my friggin luck, right? These last several weeks of torture have been the result of this fact. Because that person was 'unavailable', I am now going to have a 9/10 match, or an Matched Unrelated Donor (MUD) 9/10 match. Not entirely ideal, but I'll take it- with enormous gratitude. This person, my 9/10, has sent in their blood and is currently going through the rigors of the re-testing process. Whoever you are, thank you. Thank you for giving me life.  I am forever in your debt. May you have all the blessings in the world, you are a saint. (btw, have YOU joined the Be the Match registry? no? why the hell not?!).

On July 8th I will be returning to Houston one last time before the official move day to meet with Dr. deLima to discuss the chemo and transplant process, risks, effects, outcomes. Then, roughly 4 weeks later, to the day, I will receive my transplant. August 8th (ish) HOLY SHIT.

Let's fucking roll.

Sunday, June 13, 2010

Riding Uphill

This morning, well, Saturday morning, (considering that it is currently ohhhhh 4:30 am on Sunday), my teacher Justicia gave an analogy in class that basically scared the everliving shit out of me. She was talking about riding her bike uphill. The story goes that a friend of hers had given her the advice to, when riding one's bike uphill, not focus on the peak of the hill but rather only a few bike lengths in front of your tires, or even your tires themselves.

Why did this eff me up in such a major way? Well, the last few weeks I've found myself in a place with which I am not very familiar or very comfortable. That place is, to put it bluntly, a shitty, shitty place. The deep, dark recesses of my pyche. Painful, unsure, uncomfortable, scary, depressed, sleep-deprived and angry. So, so angry. It feels like I've been twisted out of myself and can't seem to find the right way to put myself back together again, and that I may not even give a crap enough to.  This feels so, so unnatural which is causing me even more unease. This is not me. I am not myself.

Everything feels like a hill, a struggle. Every situation is stressful. Every conversation a blur. Every night is fitful, scary and maddeningly long. Nothing is calming. Yoga brings no solace, just stress (this is nearly as maddening as the long nights which follow). It's almost as though things have gone stagnant around me but my mind and soul and body need to go foward, but can't. They are chained in the moment and the moment offers nothing.

This hill is just feels simply too high. Too far, too long. I'm off the bike and trudging (crawling, dragging myself forward).

The burden of not knowing when this transplant will happen is taking it's toll on me in ways I did not anticipate. I'm in a constant state of stress about what to tell this person (myself?), what to arrange (what the hell can be arranged when I don't know anything!!!!), what comes next? What comes next? What comes next? Answering the question 'So, do you have a date? Do you know anything?' makes me want to scream. I mean that. A deep, from the bottom of my lungs, rip your guts out, scream. I hear it in my mind in the moment that I need to take before I answer. If I am terse about this in person, my apologies.

Calls made to MDA searching for information, even the information that there is no information yet, go unanswered.  I will have a thing or seven to say when I do get my ass down there.

The summit will be liberating, cleansing , a relief (progress! change! CURE) but the descent after is also terrifying thought. I only pray that my brakes are in order and my body strong enough to halt a free fall.

It is just so hard to keep your eyes down and focus on the moment in front of you, when the moment in front of you is the same as the moment before, just more uncertain. It feels like everything I touch anymore falls apart at the seams, including myself. Music, which gives me my only solace, turned stressful and unsure today as well. I can't shake this. It's like riding a rickshaw hauling the shell of myself into the Pyrenees (professional cycling fascinates me. In 2001, I saw a small portion of le Tour de France in a small town outside of Paris. It was one of those cherished memories kind of days).

My eyes are on the road a few feet in front but those few feet are giving no indication of ground covered.

When I can sleep, these are the sorts of nightmares that haunt me, make me toss myself awake only to stare, glossy-eyed, at a computer screen hoping to drift off again on the keyboard. What I wouldn't give for a night of uninterrupted, undrugged, honest sleep. My kingdom for some sleep. (Maybe this would solve the whole damn mess).

One date on a calendar may (may not, probably won't) take me out of this. A goal. Something to focus on other than focusing on having nothing to focus on.

I just don't know. Move me forward, change me, hollow me out. Please.

Thursday, June 10, 2010

And now for something completely different

So, after reading my last two posts, I sort of feel like a jackass (asshat?).  Who am I to call anyone an asshat or to bitch about not being able to buy a new dress? Yeah, I'm no one.   In all seriousness, I really do feel guilty for posting whiny posts. In my very first entry I stated that I had a commitment to be positive and yogic and I have not done so as of late. Maybe it's the thousand consecutive nights without sleep or the end of the academic year, but I must say: Mea culpa up in here.

To make up for my jackassery (asshatery?) here are some non-cancer related WTFs from today. Feel free to laugh at me, someone should.

1) While walking to work this morning, a man stopped in the middle of the sidewalk, blocking my way, and fondled himself while staring at me. My head went down and then the police were called. Uh, yep.

2) There were two cakes at work today. One of which (the most deeeeelicious one), no one knew what it was for or where it came from. Yay mystery cake!

3) A child stood on a chair and screamed in my class this afternoon. I take no responsibility (or full responsibility if you are my boss/ that kid's parent and you are reading this).

4)Having not slept in, ah, weeks, I chose to skip yoga class tonight and nap on the couch in my heels from work. P came home and, upon seeing the state I was in (did you read #1?), whisked me off to The Guard House (a restaurant in Gladwynn which is very special to us. go there. you won't regret it). Good lord, I do not deserve him.

5) While sitting at the bar, half asleep, milking a cocktail, an older woman walked in. She approached a woman seated next to us, who we found out later was her sister, and apologized for her tardiness due to the fact that she had been having phone sex for the past hour. Yes, you read that correctly. This woman who, by my estimate was in her seventies, had spent an hour having phone sex. And had no qualms about sharing as much with her sister. Loudly. In a fancy bar. I nearly spat out my vodka. Go you, madame.  P was scandalized. Me? Made my friggin week (and probably her's too). 

6) This same woman stated to her sister that P and I (the lovebirds at the end of the bar, as we were called. Thanks!) were cute, however, P was much too young for me. I should have an older husband. After all, she only married multimillionaires several (many) years her senior for a reason. Hi. la. ri. ous. You madame, are fantastic.

7) I face planted into my laptop 5 minutes ago.

There ya go.

In other news, I still have no word on a donor. According to my onc, Dr. Raj, MDA is taking their time matching a donor for me 'because they have the time'. Good. Thank you. Let's get this shit done right the first time.  Just don't wait too long, this is killing me (haha, funny cancer joke).

Also, there are many thanks to be sent into the world from me. From my heart to yours, thank you. Deepest, humble, thanks.

Tuesday, June 1, 2010

Comic Relief or How I Remembered that I'm a Perpetual Patient

Had a girly moment this weekend and purchased (way over priced. shhhhhhhh) self tanner. When I put it on, this showed up (I am wearing a tube top, not naked, don't judge):
See that square mark on my shoulder? It's from the heart monitor that was stuck to me during the IVF egg procedure last weekend.  Uh, surprise?  I laughed for a good five minutes at this (after I stared in the mirror for twenty trying to figure out what the hell it was).

Oi vey.