shameless self promoter

oh well, we all have to be doing something right? I know I probably annoy the piss out of most people by constantly cancering them all the time, but I'm on a mission to get some research done. I have to see this research started. Anyone would feel the same if they knew my many beautiful friends who are really struggling with this disease.

It's all good

I made a couple short videos tonight of me and the girls, hugs and kisses and sunshine. Going to go snuggle now and watch Star Wars....again.

people are starting to donate!!

Yay folks, we're 0.1% of the way there!!! The radio interview that I taped this morning will air on Sunday Morning on WSRS in Worcester/Boston. If you want to hear it on line it'll stream live at www.wsrs.com at 7am and will also be available as a podcast. Another exciting new development is that we're meeting with Cycle for Survival next week to discuss joining forces in our fund raising efforts. We have a budget that's being worked out by Christina Antonescu's lab at Sloan and once we get the magic number, we'll be able to more effectively fund raise. I think this may really happen, and whether I'm around to see it through or not, I KNOW that someone will benefit from this research, I will take that to the grave and have a smile on my face because of it. Just FYI, if you ever find yourself facing a tough time, out-tough it! BTW, the guy sitting next to me in lab right now is driving me insane, he's typing so loudly it hurts my ears. I can feel his keystrokes through the bench top. Random, but true:)

the race

ok, so fate gave me this insidious disease, but it also gave me the tools to fight it. This sneaky cancer might take me down, but not before I help get the ball rolling to eradicate it all together. I absolutely love productive meetings with smart and motivated people and was able to enjoy one just like that today. We have plans for you angiosarcoma, in fact we are having a specific budget drafted in your honor. Maybe you're hiding in my lungs, my bones, my skin, my breast, my liver, or the unmentionable places that you save for your most favorite victims, but we are on the move. It's a race now.

you get more flies with honey

not enough honey when you have a terminal illness and almost everyone you knows blows you off.. thanks for your annonymity

friends haha

I only have a couple that are willing to donate money to research that might actually help me. It's frustrating to say the least when you know people are not willing to give a beers worth, a coffees worth, a quarter of a tank of gas worth. I know times are tough...walk in my shoes. I know people don't have much, but they have enough to post pictures of their latest vacations, of their professional photo shoots, of the adventures the night before that must have set them back at least one experiment, at least one cell culture dish, at least one vial of protein dye. Everyone wants to put on the , "oh, there's my cancer friend" face and feel good about themselves when they smile at me from an arms distance away. If anyone wants to actually make me smile, they can suck it up and dish out a whopping 10 bucks to our non-profit www.angiosarcomaawareness.com

fog

How many times have people used the fog metaphor? I'd be in a daze if I tried to recall, but today was a foggy day. There's a hill that reveals a glimpse of worcester that I always look at on my way home from work. You can see the city over the rolling landscape silently embedded in a picturesque far away land. It was completely gone today, I couldn't see past the oak tree in the yard just next to where I was driving. Was it still there? Did it vanish and leave in its place a blanket of white fuzzy nothingness? I was forced to look at the details of my nonvista life, up close and personal. It wasn't so bad you know. There were beautiful fall colored leaves all lined up to take the final plunge. There were abandoned lemonade stands, weathered, dilapidated, oozing with memories of someone elses childhood. There was the road that I decided to travel, full pot holes, puddles and loose gravel that pitted the undercarriage of my van. I usually take that road for the scenery, but it's always been at some expense...just never noticed it til the fog rolled in. Now I'll take it for different reasons.

networking and heartstings

Today was the cancer walk at umass, I gave a speech and met aLOT of people who are willing to help me get the word out about angiosarcoma. That's all good stuff. When you need help and ask for it, people respond...especially when you're young and bald. The woman who did all the PR for the event, all the local radio personnel, the corporate sponsor liaison and many more people offered to lend a hand in getting our fund raising efforts rolling. I'm pretty excited about all of this. It's the best place you could possibly be if you have the worst cancer you could possibly get....feeling useful

Brain transplant? Computer download?

Ever watch the movie Coma? It's been out for what, 20 years now? Isn't life supposed to imitate art?? Where's my fresh cadaver for a brain transplant? With all the techie stuff we're immersed in, I'd give up my fancy laptop, my cell phone, my computerized tomography scans for a simple brain transplant. Angio almost never goes there, so it should work, right? If for whatever reason that idea is not feasible, why can't I just download my thought processes onto a 64GB hard drive? Even if there are some compatibility issues now, I'm sure that in time, they'll be worked out and I can just live through constant blog updates and facebook posts. Either way, FrankenCorrie or Flashdrive Painter, I'd be able to hang with all of you:)

words

few = many
Just kidding, I'm not really providing fortune cookies tonight, it's just 2am, I'm up and am feeling silly with no one to laugh with. hahahaha HAHAHAHA, ok, where's the white jacket?

awareness

angiosarcoma...fund it

yup, she's a puppy

just picked the cat poop out of the dog mouth.....

walking to the pond

Maddy and I walked Vera to Mckinstry pond this morning. That doggy loves the water and every algae coated object in it. Vera started off as cute puppy and ended up as slime encrusted swamp thing. This afternoon, Charly and I walked her back to the pond. It's amazing what that little body of water will reveal at different times of day. It's nice having a mini scenic get away 42 steps away from the front door.

Vera Vera, what has become of you

We went to the rescue shelter and decided to take 40 dogs home with us today. Really folks, how could you choose one over any of the others. They all have the most giant, take me home now, eyes and the softest, pet me for the rest of my life, fur. I knew I couldn't have any say in the matter if we were to make it out of there today, so I left it up to the rest of the family. It was love at first sight between Robby and the cutest little mutt, part beagle/basset hound/shepard, you ever did see. The girls fell in love with her after about 1.2 seconds, about the same time it took her to crawl up into my lap and work her magic with those eyes. I in turn used my eyes on Ted who was sold. She's so mellow, so sweet, so sleeping right behind me just next to the spot where she took her first dump on our carpet...ahh the love.

reaching out to a friends mommy

Please know that I'm here for you. I'm so glad that we had the opportunity to see each other recently. Call, email, text, but please get in touch with me. We can be partners in "fun with cancer". We can also talk about the less then fun parts of this monster. I'm thinking about you!

lets talk science

Every time I open up pubmed to do my research...you know, for the PhD that all you lovely tax payers are funding, I end up doing cancer research. Right now the research that has me the most excited is the potential use of microRNA's as therapeutic agents. Too bad I didn't get this blasted disease 10 years from now...I really think that scientists are on to something and will reveal interesting and novel genomic based therapies over the next decade....it's a race against time. Maybe in that same time span, I'll actually refocus on my thesis and graduate..hahahaha

every little thing is a monster

When I was 5, we had just moved into a new house that had an intercom system. Being so young, I had little concept of what that was or how it could be used to profoundly change the course of my childhood until the night my parents left me in the care of my older brother. The first brilliant idea he had was to let me watch the omen. The second brilliant idea was to send me to bed in tears and in total fear for my little life. Off to bed I marched sullen and alone, that is until I heard the voice of the devil penetrating my room. "The devil is inside you" was repeated multiple times over that intercom system, each with a more sinister accent, each with more evil fits of laughter following. I was paralyzed in fear, after all, the devil was clearly inside me. From that night on, I lay in the exact center of my bed so that I could make the fastest escape from either side should the devil show himself. I would see images of the devil in the patterns of my wallpaper. In short, I became insane at a young age. After years of paranoia, I began to accept the fact that maybe I wasn't possessed, maybe the devil wasn't there at all, maybe every little thing, every irrational fear was not an actual monster. There was a nice little reprieve, but now every little bruise, every sore muscle, every inexplicable headache could be that pesky devil inside me once again...guess it's time to sleep in the middle of the bed, only this time I'll arrange, in perfect rows on either side of me, all my supplement bottles for good measure.

Not an idiot at all

In a previous post, I copied an email correspondence that I had with a woman involved with the umass cancer walk. In it, I deleted her name for the sake of anonymity and replaced it with idiot. At the time, I was less then happy that she referred to my cancer as angLosarcoma, especially since the purpose of my speech was to raise awareness about angiosarcoma. Raising awareness about this monster has become a second full time job, so when I thought this woman had flippantly discarded the essence of my speech and edited it incorrectly I was pissed and took it out on my blog. Well folks, she read it. She was not happy that I posted our personal emails and less then thrilled that I called her an idiot. After a voice to voice conversation we realized that our typed to typed conversations weren't working. She's a breast cancer survivor and knows the universal feeling of "oh shit" when the words "you have cancer" are spoken from even the most innocuous lips. She also has a heart and a good soul and wants to help me and all people with cancer. After our conversation, she sent me some invaluable information that will help me advertise our new angiosarcoma awareness incorporation. In addition, she arranged to have me interviewed by the T&G gazette. She's not an idiot at all, just an overworked cancer survivor trying to make a difference...and she did.

researching your own very special disease

Before I went into grad school, I was a technician in a cardiovasular physiology lab at Vanderbilt. A large part of my job consisted of culturing primary endothelial cell lines. As I read the details of my very own special and unique cancer, all the protocols used and cell lines established are the same as those that I used years ago. I feel well equipped to understand in exquisite detail just how fcked up my cancer is, why it's so aggressive, why we need to fund research, why we need to fund it now and fund it well! It really is a bizarre place to be. I imagine it wouldn't be too dissimilar to being the captain of a sinking ship. Intimately aware of all the nuances, but totally helpless with a head full of knowledge and impotent arms as you look down at the unstoppable gaping holes filling with water.

2 girls 2 moments 1 heart

Sitting at the table tonight Maddy looked up at me and placed her hand in mine and said, "hold my hand mommy". So I did. She then looked up at me, with her hand swinging gently with mine and said, "I love you mommy". She must have repeated this 3 or 4 times. I know it wasn't a 2 year old plot to get out of eating any more food, it was just the release of an honest and beautiful emotion.
Later in the evening, I was snuggling with Charly making up a story about a reindeer Pegasus named eliana who went on many adventures and who was, of course, the most beautiful creature to have ever walked the earth. Having Charly in my arms snuggling just the same as when she was an infant, my arms wrapped around her, her head nuzzling my neck brought me back to the day I brought her home from the hospital. I rocked with her swaddled little body pressed firmly against me with her tiny little head nuzzling my neck. I knew then that I would visit that moment many more times in this life..just like tonight. She's so big now, they both are. I've been so lucky to hold their hands, to see their love spill out into this world..so lucky.

living to your potential

Why not? Even if you're a ticking time bomb, you still have something to offer this crazy world. I refuse to accept the sob stories from people who feel like their lives are meaningless. It's absolutely 100% your choice and duty to fill it up with meaning. No one is going to hand you a "here's how you feel good about yourself" manual, but I can guarantee you that if you have any little gift, however insignificant you may think it is, and you push it until it falls over, you'll find a life of fulfillment underneath it...

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.