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.

Say goodbye to being little

Maddy's car seat was sitting by itself on a chair in the rain when I picked her up today. Oops. Luckily, my daycare provider (the best in the world by the way) offered up every device made by man to strap a kid down inside a car. We settled on a slightly used backless blue booster seat. Maddy, who is already one of the most animated humans that I've ever met, became overwhelmed with joy. True unabashed joy. Looking at her in the rear view mirror, I saw a little girl where a tiny girl used to sit. I decided it was time let go of her car seat, so we popped off the highway and bought a booster seat of her very own. In the 5 &7/12ths years that she's been on this earth, she has never exhibited the level of happiness that came pouring out of her on the rest of the drive home. "Look mommy, I can put my cup here! And I can sleep with my head in the head rester! AND I can reach Charly's jacket!! ANDDDD I can touch you!! Mommmy, I can touch you with two fingers now!!!" she squeaked while trying to lunge forward in order to explore all the new possibilities that her new thrown granted. Maybe it was because she's yearned for the booster seat freedom that Charly has possessed for years now that she exhibited such overwhelming gratitude, or maybe it was because she came upon the realization that she is saying goodbye to being little. Regardless of her motivations, perhaps I shouldn't try so hard to figure out why she was so exuberant, but rather focus on holding on to the smiles that she planted on everyones face who has come in contact with her since the buying of the seat. Hopefully she'll be this excited when she says goodbye to the booster seat, I'll be sure to let you know in about ten years....

Thankthank you

Today we had people from Maine, Maryland, Minnesota, New York, and Connecticut come to Massachusetts in order to participate in the third annual Angiosarcoma Awareness 5k. True humanitarians, every last one of them. These people have shown me the best that life has offered up so far. I have said thank you so many times that I fear I'm running into gratitude inflation. So I'll take the lead of any good governing body, and I'll just make more. Instead of thank you, I will now thankthank you all so very much. Really, thankthank you from the bottom of my heart.
In addition to our 5k, Ryan Humphrey put together a sister 5k in Troy Michigan in just one months time. As impressive as that might sound, he did it while recovering from a complete resection of his left lung and while undergoing chemo. I can not overstate how impressed we ALL are by his herculean efforts which culminated in close to 400 people crossing the finish line. Of all the stories I've come across, and there have been many, this one impresses me the most. Hats off to Ryan and everyone who helped him put this together. Thankthanthank you Ryan!

3

Tomorrow will be the third anniversary of the worst day of my life. It seems more like the third revisiting of an immeasurable span of time where days, minutes and months were indistinguishable. We all know that time can bend around large objects, but I think it can break right in half when trying to wrap around intense emotions. And so it is that I find myself with a personal fault line that separates my pre-cancer and post-cancer memories. I’ve intentionally kept myself very busy since May 4th 2010. Despite my haste to fill every nook of time with anything that could shield my brain from the ever looming statistical reality that my days were numbered, my life has continued to unfold. I could never have imagined that what started off as a good distraction would lead to some of the most profound relationships that I have ever experienced. Once upon a time I didn’t know people who were entering hospice at almost a daily rate, nor could I recite the tributes that their loved ones would write in their honor. It used to be that I would cry because I was sad, or I was happy, but never because I wasn’t sure which emotion was tugging the hardest at that moment. I hope that one day I’ll be able to go back and explore the rift that has so sharply divided my life, but for now, I’ll keep moving forward toward the next milestone. Charly’s 8th birthday? Here we come!

Long Strange Trip

Crystal light raspberry ice + iodine is THE drink at Dana L1. I always want to say cheers and clink plastic bottles with my sullen company, but I don’t think my humor, which isn’t always appreciated by people in the healthiest of states, would go over well while sitting in purgatory.

I’m supposed to get a full body CT with contrast every three months, but I decided to wait for some unspecified amount of time for this one. Part of me was satisfied with the notion that I was just too busy to spend the day at Dana, scans would just have to wait. The other part decided that scans are too stressful, and living in ignorance truly was bliss. Ignorance however is going to come to a screeching halt this Saturday when I go down to the annual American Association for Cancer Research conference. It’s hard to bury your head in the sand when waves of reality are crashing over the rest of your body.

Clean scans means a clear head when I shake the hands of my doctors as a scientist instead of as their patient. I'll be there presenting work on the zebrafish melanoma- immunology project that I'm working on, but also to spread the good word about why angiosarcoma should be the focus of much MUCH more research.

If nothing else, this has to qualify for being the least boring way to spend a couple years. What a long strange trip it's been. To celebrate all of the above, maybe I’ll trade my 0% real juice pre-scan cocktail for something a little less nerve racking and little more clink worthy.