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.

Biotech 4 lunch

Life is really good right now. My only complaint is that I'm experiencing BBN (Basic Blog Neglect), which I believe stems from the fact that I am so busy living life that I haven't carved out much time to reflect upon it. The past few months have been wonderful. With a clean bill of health, happy kids, and a wonderful husband, I thought I had it all..until I began to have lunch with the Biotech 4 lunch crew.

I used to eat a salad at my desk as a grad student. Now I eat pistachio nuts and vegetables out of bags as I get my daily education from my new lunch mates. I come home with stories worth telling someone, anyone almost daily. I have to wait until the kids are asleep before I can mention them to Ted. Sometimes I have my camera on and pointed in his face to catch the anticipated look of confused bewilderment that ensues after telling him the things I've learned. Best Pictures ever by the way. In fact, I told members of my family some of these stories at thanksgiving, and like I did with Ted, I captured that moment of WTF manifest. I'm thinking of making a collage.

I wish that everyone could come and find space at our table and enjoy the random and ridiculous stories that are shared. Some topics that have been particularly noteworthy are fruit fly, duck and human "mating" rituals, mold beasts, my lack of knowledge about all things religious, and the inconceivable disliking of the Beatles.

The last thing I could have imagined when I started my new postdoc was that my education would be so far reaching, but everyday I am reminded of just how much there is still to learn.

Maddy and the Milestone

Last week my baby turned 5 years old. What a gift it was for me to watch her pass through what I thought would be an unattainable milestone. She turned 5 as though it was any other day, only with a dragon cake and more MORE MMMMMOOORREEE unicorns. She turned 5 while being totally lost in the moment. The silliness that she expressed before she could use words came bellowing out in streams of 5 year old laughter. She is so good at being alive, I learn how to be a child all over again every time I look into those blue eyes. What a gift it is to be part of her.