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.

The Josephine Norcia-Riley Memorial Research Grant

I feel honored to have been able to help Sean, Josephine's husband, write a short bio for Jo. Her husband, friends and family are going to ensure that her life and legacy carry on through a memorial research grant that Angiosarcoma Awareness Inc. will distribute yearly.

Josephine Norcia-Riley was born into a life that would ultimately bring laughter, happiness, and inspiration to everyone who had the fortune of knowing her. When faced with adversity, Jo would rise so far above the occasion that she would teach everyone who knew her that there are no limits to what we can achieve, no matter how much or how little time we are allotted in this life.

Jo was born on January 26th 1967, she would die on that same date at almost the same time 46 years later. In that brief time, she was able to leave a legacy of strength, determination, grace and beauty before she was taken away from us by angiosarcoma.

Josephine graduated Pope John High School in Everett in 1985 and Northeastern University in 1989. Although she had known her husband since 1985, they didn’t begin dating until 1991 and were married in 1995. Before she became a mother, Jo would seek out fun in every corner of life. Once her children were born, her focus shifted squarely on her love for them. Every other part of her life would become a tool for raising them with the perfect combination of love, strength and tenderness. Her fun loving attitude would ultimately lead to lessons about how to live inside of happiness. Her strength would ultimately reveal to them that even when faced with her own mortality, nothing could break the bond between mother and child.

Jo was absolutely committed to her family and her friends. When she was diagnosed with angiosarcoma, she was in a state of absolute shock. It didn’t take her long to find resolve though, and when she did, she put up the most courageous fight that anyone faced with her prognosis could possibly mount. She fought for her children. She fought with a smile on her face. She fought while making hilarious videos, while cooking amazing Italian meals, while carrying on with all of the activities that made Jo Jo. During the darkest moments, when there was no hiding from her fate, she smiled because she knew that she had done everything that she possibly could do in this world.

Jo’s life is a gift for the rest of us. If we ever need guidance in this world, we need only ask ourselves, “What would Jo have done”. The answer will always come back the same, it will always be simple, it will always be one word, “Everything!”. To that end, her family has arranged for a memorial research grant to be generated in her name and distributed each year in an effort to combat angiosarcoma. Jo’s fight will continue with the hearts, hands and minds of the scientists who receive these grants. Ultimately, her life and everything she stood for will bring relief to total strangers who haven’t yet been diagnosed with this devastating disease.

best strep ever

Both of the girls have Strep throat right now. Charly is down for the count, truly sick. Maddy on the other hand seems completely devoid of symptoms, with the occasional "my neck hurts mommy" thrown in as she gallops past me toward her next unicorn adventure. I have spent the day rubbing feet, putting cold compresses on feverish forheads, and dispensing delicious pink liquid elixir. I cannot express how happy I am to be here comforting them right now. It’s my favorite reason for being anywhere anytime.