What is that on our walls?

This blog is going to be focused 100% on clutter. Some history first though..
Ted was trained by the military to be clean clean SPARKLING clean. I was, am and will always be a helpless slob. Opposites attract right? Skip 15 years into the future and here we are, kids, animals, many jobs, even more hobbies, and the clutter. Next to my right hand is my phone, a pink blendypen marker with no cap, a kaleidoscope, a miniature picture of Charly that I was using to size for a locket, my sprint bill (which in and of itself deserves its own blog post), a computer screen and keyboard (there's no actual computer to connect them to), a picture of a rainbow unicorn, a tag from "new" clothes, a plastic rainbow dash and a hole puncher.
Ted and I try, honestly we do. Under this fresh smattering of clutter is a recently dusted desktop. Under the stack of books on the floor is a vacuumed area rug. We pick up all the stuff and move it to other places, but it never seems to go away. Apparently Ted has been keenly aware of this and has been patiently waiting for my awakening for years.
And it finally happened. I was walking to the bathroom and for reasons that still remain a mystery, I noticed a faded piece of pinkish construction paper taped to the wall. I walked up to inspect it, surely it was there for a reason. It must at the very least have a scribble or brandish some artifact of childhood. But it didn't. I think it was there for years. Was it there when we moved in?
I looked around and saw for the first time ever, my house. There were Christmas decorations left up from last year. Tis the season I guess. Maybe because I'm jewish I can claim that I didn't know on that one?
We began the process of decluttering. We took the taped art off the walls, we threw away bags of papers, old bills, notebooks from grad school, printed papers on topics I don't care about anymore. Although we tried, we made a tiny dent in the clutter. I want to throw it all away, I want a clean clean SPARKLING clean house! But it's getting late and I've had a long day. Maybe tomorrow....

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.

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.

Mr. Snow Man

The day before yesterday we were hammered with 22 inches of white flaky fun. I always turn into a five year old when the snow falls and am looked at by all the adults with disdain as I brush their snowy cynicism off my shoulders like a case of recurring dandruff. I cherish every flake. As each flake falls, I can see the atmosphere that usually reveals itself only in the highest clouds. A snowy day could mean the perfect snowball, flying down mountains, cave digging, sliding haphazardly on the roads, and most importantly of all? It means I can resume life as a child as I craft the perfect snow man with my little girls. Yesterday we recreated Frosty, top hat and all. He was magnificent in his 6 feet of glory. His scarf was gingerly tied around his solid neck, the pipe was placed perfectly askew from his invisible mouth. The girls and I are sure that he frolicked all around the neighborhood when we weren't looking. And so it lasted for one fabulous day. I drove home from work today and Frosty's head had fallen off. Facial debris was scattered all over the snowy remains of yesterdays landscape of fun. I walked inside with a sullen look as faced the girls with my grim news. "Frosty is down" I said. "Oh well, at least we got to enjoy him yesterday", Charly said. And just like that, every important lesson I have ever tried to teach my children became realized.

Josephine Riley

"My babies, look at them now!"...My favorite quote from Josephine in 2010. Her children were about 4 years older then my own when she uttered that quote while squeezing their faces with motherly pride. That pride was so well deserved. That one sentence and quick gesture resonates with me still as I think of the meaning behind an otherwise ordinary moment in the grand scheme of raising children. She had just finished telling me about her experience after she received "the phone call". Jo and I had identical reactions. We threw the phone and fell down in a heap of inconsolable despair. We could not fathom a world where our children would be too young to remember us. It had been four and a half years after thinking she'd already run out of time. These years might seem short if you are not in the middle of raising young children, but they are the difference between being a mother and being a distant memory. It seems that time wanted to keep her until today, her birthday. As heartbroken as I am, I'm so grateful that she was able to squeeze many times over those faces that she loved so much.