a shooting star, a gift from the universe

Our little town hosted a "drive in" movie tonight at the local little league field. Monsters inc. was the film dejour, so we layed out our blankets, bought our popcorn and snuggled up to enjoy the movie. I rested my head on charly's back and maddy had her little face in my arms.. I watched my girls, I watch the stars, I went into the moment, I fell right out of it. I couldn't make it stick tonight, somehow, I let the future wittle it's way in and project images of my babies that I might never see. In a hollywood attempt at reassurance, I looked back to those same stars, but I asked the universe for some sign. Sure enough a shooting star was sent just for me. Do I think this shooting star can magically cure cancer? Well, we'll see about that now won't we. Do I think this shooting star was a coincidence...not sure and kind of happy about that.

Umass cancer walk speech...for angLosarcoma

Hello, I’d like to take a moment and introduce myself to all of you. Some of you may know me, but the vast majority of you have never made my acquaintance. My name is Angiosarcoma. I am an incredibly rare cancer that starts in the lining of your blood vessels. I’m an equal opportunist and don’t discriminate, so no matter who you are or what you do, I may decide one day to visit your breast, or your spleen or your heart. In fact, I can show up anywhere in your body at any time of your life for reasons that remain secrets to me. No one is clever enough to unfold my mysteries, few have even tried. In this era of research and discovery, I’ve been left alone to invade whomever I please. I’m smart enough to keep myself under the radar, I know that if I select only a few people every year, no one will care enough to give their money and fund research that might discover my secrets, research that might help build an arsenal of drugs to attack me, that might bring the necessary awareness to the research community to eradicate me altogether. As a result of my adeptness, I will strip people of their lives with incredible speed. Unlike other cancers, I’m already in the blood, so I don’t have to figure out how to crawl through your tissue in order to metastasize. It doesn’t matter if you’re a marathon runner, if you eat organic vegetables, if you’re a mother with babies who look up at you with giant blue eyes and the sole expectation that you’ll be there to tuck them in the next night. It just doesn’t matter to me. I have one purpose and one purpose only, to ravage your body.
My greatest fear is that people like you will catch on to the fact that if you fund research for angiosarcoma, you might realize that by stopping me, by figuring out how I can form aberrant channels of blood vessels, by figuring out how I can manipulate the natural process of angiogenesis, you might actually build a vast array of weapons against all solid tumor derived cancers. My greatest fear is that people like Corrie Painter will get up in front of a generous group of people such as yourselves and tell you all about me. I like being an orphan, please, for the sake of my livelihood, don’t listen to her, whatever she has to say, I’ll silence anyways…just give it time.
(I’ll close this with a blurb about how you can find out more by talking to me or visiting www.angiosarcomaawarenwss.com)

sitting in front of the terminal

It's now officially time for me to get my shit together, no more dilly dallying around the halls of Dana, no more surgeries, no more long waits to be prodded like cattle into the overflowing infusion center for chemo. So what's next? I suppose I should get working on that silly little thesis that I was supposed to write in April. No problem, I'll sum up 7 years of biomedical research into a tidy little book and get on with it. First things first, let me open up a file. I'm not asking much here brain, it's a file. On Mac's, there's a terminal window and when you open it, it just sits there and waits for you to type a command. It won't read your mind, it won't talk you through the steps, there's no comfort icons that let you click your way from one cutesy bubble to the next, just a blank screen that looks agonizingly empty. I opened my terminal today and it was as if someone had smeared marshmellow fluff all over my brain and said...go! I finally remembered the most rudimentary steps, and eventually was able to run my programs, but man, I'm in for a steep ascent back into the world of science. Where's the remote, I need a sitcom first!

Devastation in an otherwise perfect world

I can't remember a day where the weather was more perfect. Everywhere we went, people were thriving on it, embracing it, living it well. I watched all the people around me merrily go about their happy little lives totally oblivious that under my hat was a bald head and under my smile was a deep well of despair. A.A.A., such a beautiful soul, such a strong spirit...a fighter, a winner, a girl just about to take her first steps into a new world of responsibility as a cracker jack teacher had this stupid cancer come back. Last week she started going through a harsh treatment for angio that's returned to the major vessels of her heart and to her lungs. It's not easy folks, but she was determined to get on with her life, she is determined to go forward no matter what. To my shock, this morning I received news that her 18 year old brother died from unknown causes. How can this be? How could one family be expected to carry this burden of grief. How can you move forward through this? How, when she's fighting for survival could life so callously slap this fate upon them. Nothing makes sense right now. Will time actually heal this one? Through this all, the beautiful day continued to unfold, Venus rose in the crisp evening sky with razor blade clouds cutting across the last hints of orange light, cutting deeper then Fellini could have ever imagined.

Jerome O'Donohoe

Our little angiosarcoma community lost a friend today. I never met him but feel compelled to say goodbye anyway. Stupid cancer.

coffee spoons

T.S. Elliot lamented the fact that he had measured his life out in coffee spoons. What is your measurement? Mine could be measured in CT scans, in IV draws, in literature updates...in time. I prefer to measure my life in emotions, in love, in smiles that might not have been enticed to spring from an ordinary moment. We can all make it worth while, there's no need to be silent!

how to fight cancer and win

1) Get rid of the notion that living til your 80 means victory. Have you hung out with many 80 year olds lately?

2) Set lofty goals, the higher the better, and then make them happen.

3) Don't use cancer as an excuse to give into fear. Fear will always be there, but so will many other and more enjoyable emotions..it's really your choice which ones you let in and which ones you let go of.

4) Always end sentences in prepositions and never care about how words are spelled.

5) Don't assume that your doctors know everything. If you can, research it yourself and if you can't, find someone who can get you solid advice.

6) Be aggressive, the cancer isn't intimidated by much, so why should you be?

7) Look into alternative/synergistic therapies to include along side the standard "let's kill everything and call what's left over a life" regiments in which modern medicine puts it's entire collective faith.

8) Love deeply and in the moment...nothing will ever take that away from you, not even death.

9) Fund research! We're so far from "the" cure, but we're darn close to managing some kinds...it takes science money, which can be thousands of bucks per experiment to get the ball rolling.

10) Even at our darkest moments, there's always something unique to each of us that brings us back into the sun. Find your light.