For Robyn.

I asked the technician at Dana Farber if I could sip my contrast + crystal light in a little room separated from the rest of my unfortunate sippers. I didn't want them to see me fall apart while waiting for their own bad, good or stable news. Already emotionally charged as I waited for what would ultimately be good news about my own scans, I called Lauren. "She's gone" I whispered over the phone. We both sobbed, inconsolably for a length of time that doesn't have a unit of measure. Lauren was right there with Linda and me when we decided that we needed to save Robyn's life. So many people decided that we needed to save Robyn, that there really could be no alternative. It was going to be a beautiful story about how we all joined forces, doctors, families, friends, strangers, the entire world of science and a whole lot of hope, to create a bonafide miracle in order to save her. And we tried... so hard... all of us. And she tried even harder. Lauren and I wept together as we tried to process the magnitude of this loss, only to come to the conclusion that it's horrific. The end. Linda should have been here. The End. Robyn should have never been sick. THE END. In the words of her favorite doctor, "Let her rest. Such a brave girl. She is now safe with her mom. Away from this battle. Let her rest."

Not Jaded at all

Last night I watched the Red Sox take the ALCS title away from the Tigers. Two things stood out as significant to me while watching. The first was how many times the announcers could query whether or not Pedroia's foul ball was reallllly to the left of the post and the second was the camera shot to the crowd of thousands of nail biting fans waiting to hear the ruling. It is really the latter that struck a cord with me. Countless people were caught up in the moment, sharing a collective anxiety, every heart in every human watching that game live or from the myriad of beer stained couches throughout the land was racing in unison as the referee's reviewed the shadow that the ball cast as it slipped away from a home run. 216 stitches flying through the air hit by a boy in tights. Humans desperate for the ball to shift by a couple inches. Despair as it sinks in that it was indeed foul, it wasn't an optical illusion, the ball really did cast a shadow to the left of the post. But the game went on and "we" eventually won the title. Hurrah, success, we should pat ourselves on the back. Today we all smile, we won! How comfy to be part of a collective, to know that we are uniformly striving for the same outcome, that together we will spend millions on tickets, beer, pizza and wings as we make our way to the World Series! Good job human's, it's nice to know that there can be a singular focus to galvanize us toward a victory of sorts....

In the Nick of Time

I can usually keep it together pretty well. I am surrounded by pain and suffering and death everyday of my life, and the span of emotions that I encounter stretch my heart until it's almost flat. I've never lost my sense of humor, I cry when I want, I laugh when I want, but I'm usually in control of myself. But then Jen came in to our lives followed by Nick and ever since, my perspective on life has needed some readjustments. I've had to make room for emotions that are only on the good side of the spectrum, and as great as that sounds, it's not easy! What's so hard you might ask? Not turning into a fumbling little cry baby every time Nick lights up with a smile that starts inside of one ear and cuts right across to the other one. Seriously, his entire face is replaced by pure happiness. I also find it hard to reign in the tears when his mom starts screaming with glee as she sees them nearing the finish line. Every time she sees her son filled with so much joy, she feels it twice as deeply as he does, so you can paint the image of how big her smile is all by yourself with no help from me. Another stumbling point is watching my little girls fall in love with this experience. They get it, and I love them for that. My airborne army ranger gets misty eyed when he talks about running with Nick. Me, choking back the tears throughout it all. The span of emotions is so off kilter relative to the rest of my life, it's so infinitesimally small and condensed that it rips the tethers right off the moorings that have been steadfast in quartering me for the past three years. So there it is, possibly the hardest thing I've faced yet, happiness. I guess there's really no shame if I fail and give in to the tears, just make sure you carry some industrial strength tissues if you ever come watch them race with us!

Tory, little Warrior with the big giant heart

Tory Ward! At raft 4 Life!! I felt like a little girl about to meet a pen pal that I'd had for years when I found out I was going to meet her in person. For months she's been updating us with the trials (literally) and tribulations of battling stage IV angiosarcoma.
Tory came to the river to leave all of that behind, she came to be with friends, to paddle through the rapids, to let the thrill of adventure wash away everything that doesn't belong in the life of a 28 year old woman. If you looked at the pictures of the waves crashing over her, you'd be hard pressed not to smile, regardless of knowing who she was or what she was going through. If you looked at them with eyes that have watched too many people struggle with this disease, you'd be hard pressed not to let your chin fall right to the ground in disbelief that someone could be so strong in the face of adversity. Aside from being totally impressed that she could and would take that river on from the front of the boat, I was also caught up in the fact that she has never let cancer rob her of the ability to smile.
We had a long heartfelt talk after the trip. We laughed and cried about life with angiosarcoma. We hugged and walked away from each other with warm hearts and red eyes.
Tory had a serious setback yesterday and is in a medically induced coma fighting for her life. I can't seem to replace the memories I just made, so fresh, of her smiling, with the stark reality of her current situation. So I won't. I'll have to be strong now and smile while thinking of Tory, the little warrior with the big giant heart.

Going over the hill with a big fat smile on my face

In two hours and thirty nine minutes, I will be forty years old. I WILL BE OLD OLD OLD. I will be bonafide old with grey hair(s), wrinkles, and failing eyes. I will be so old that kids will call me Mrs. blabla automatically...out of respect. I will tell tales of my rascally youth that now happened many decades ago. I will use idioms at inappropriate times because I won't be able to keep up with the kids these days. I think I'm supposed to start wearing my pants above my belly button, so I'll go shopping for mom jeans. This is by far the most excited I've been for any birthday in my entire life. I'm giddy as a little school girl just thinking about how old I get to be!

Surprise Charly!

She doesn't know it, but I just booked Charly's first real adventure in this world. For the past couple of years I have been going to Coloma California for a white water rafting fundraiser that my friend puts on to fuel all the good research. I'm going to wait until the day before we leave to tell her. When she's heard me talking about it in past years, she would drop not so subtle hints like, "mommy, why can't IIIIIIIIII go?", or, "it sounds like so much fun, maybe one of these trips you could take me? maybe? mommmy?". Little does she know that in one short month, she'll be dining on peanuts while snuggled up in my traditional cross country tigger and pooh fleecy airplane blanket.
I can NOT wait to introduce her to the river and to show her how awesome my California friends are. More than anything, I can't wait to show that little girl how to have fun.

Steve Cunetta

Where ever there is wit, there is Steve Cunetta. Where ever there is an honest smile, Steve is there. Although I wish there were more time to pour into the details of each others lives, I'm so grateful that our paths crossed, or more appropriately, ran in parallel for a brief period of time. Steve is my inspiration and I'd be hard pressed to find another human who could match the amount of respect that he garnered in this world. He held it together with grace and dignity. He saw this mess as a unique opportunity, a chance to deliver the greatest lesson that one could offer in life... how to die well. Steve promised to send me signs of the after life in the most ridiculous fashion amenable to whatever other worldly form he takes. So I guess I'll wait, hopefully for a long time, with a sense of impending silliness for Steve to make true on his final promise to me.