Friday, December 30, 2011

Linda Pascaris

I sit in disbelief Linda that I am not writing this to you. I am physically numb and can feel very little beyond the tears that are rolling down my face. You were my confidant in all of this. Every time I would get the hint of good news, or a new lead, you were the first person I talked to. We shared the same anxiety driven anticipation for "what's next" and "how can we make it happen faster". You turned to me for hope and in turn I worked that much harder to try and provide you with some..if even just a little. You turned to me because in this tiny little world, it was hard to turn at all, and I just happened to be right next to you. If I can be grateful for anything, it's that I know exactly what you want from me. I know without a shadow of a doubt how you'd want me to carry on. I have you deep within my heart and will carry our dream together with every beat.

Tuesday, December 27, 2011

Back to the drawing board

Life has a funny way of giving you what you need, regardless of what you want. Once upon time, I had a plan. I wanted to move from basic research into something with a little more clinical relevance. While I was finishing up my graduate work, I wrote a grant to study ALS (Lou Gehrig's disease), my friend Brad was dying from it and the thought of having something so catastrophic happen while I sat idly by was not an option. It was during the last few weeks of editing that grant that I found my own fancy catastrophe lurking in my breast. Had I known that I was going to get SO MUCH first hand clinical experience, I might have decided to stick with my little teeny tiny atomic structures in the first place.
When I was first diagnosed, the last thought in my head was to get involved with cancer research. It was too close, too emotionally charged. Structural biology was nice and safe, there was plenty of distance between individual atoms and tumors. So much space in fact, that I could I would often forget that the electron clouds I would look at everyday had any bearing on anything even slightly related to life. But time has drawn me in and I can’t imagine sitting idly by while this catastrophe plays itself out in one more person with cancer.
I’m getting ready to write some grants. It's not enough to administer other peoples research, I need to develop my own project. I’m keenly interested in cancer immunology right now. It’s taken over a century, but there’s finally some definitive progress being made in this field. It’s just a matter of time, money, luck, and the right reviewers!

Friday, December 23, 2011

My Inferno

I wish that everyone could take a guided tour of cancer and then return to their healthy lives. I guarantee the world would be a different place. Almost every long term cancer survivor savors life. Self pity, pettiness, boredom...they'd likely go away in a world where people were slapped in the face with catastrophic illness only to awaken to their comfortable reliable everyday problems.
In my divine comedy, people would start on the superficial levels, where you have to call your parents and siblings and be responsible for delivering their worst fears with a trembling voice.
Next, you'd hold your children as tightly as you would a buoy in the middle of a hurricane.
As the tour progressed, you'd sit in overcrowded rooms with masked bystanders all waiting for the same toxic cocktails that have been not saving peoples lives for over 50 years.
You'd wait in the white walled rooms for hours as the familiar voice of your oncologist faded into other rooms.
Time would stand still when he finally opened your door. In that frozen moment, you'd analyze every feature of his demeanor, did he make direct eye contact with you? Did he smile and extend his hand? Was he looking at your chart when he walked in, were his hands clasped? Did he bring other doctors with him? Did he say hello? Did he sit down before opening his mouth??? The result of this thorough analysis inevitably gives you a 1.3 second jumpstart on the flood of emotions that ensue when he tells you the good, or the bad news.
You wait.
You cry.
You watch your friends die.
You stand in disbelief that people worry about their makeup.
I wish that people could taste the agony for even one minute…life would never be as sweet.

Friday, December 16, 2011

Charly and the ginger bread house

Charly is an artist and possesses a clear vision and direction for her projects long before she picks up the pen, or makes the first cut, or molds the first shape out of an unformed mass of clay. So it came as no surprise to me when she laid out a detailed plan for how this years ginger bread house was going to be made.
In the Painter tradition, we typically start by buying the prefab house that comes with frosting, ginger house parts, and a variety of stale candy neatly wrapped in plastic inside a cardboard box which is decorated with pictures of the most idealistic ginger bread houses that one could imagine. This box usually sits on our counter for a good week or so before we can find a big enough chunk of time to do it right. Charly had ample time to study the elaborate designs that adorn the box in order to develop a mental picture of what our house was going to look like when all was said and done.
Then came Robby..and then...Maddy, with other ideas, fun ideas. I began to worry when Robby came out of the kitchen with frosting dripping down his arms. My concern grew when he started painting the girls faces with said frosting while the ginger bread house started falling into a state of disrepair. I watched Charly watch her vision turn into a dilapidated ginger bread slum and to my great surprise, a smile was on her face the whole time. Even though our house has caved in sides and one giant oozing dollop of frosting on the roof with a couple odd candies arranged with no precision, all three of the kids could not be more satisfied. It warmed me inside and out to see them laughing and bonding while crafting the most unsightly creation this earth has ever seen.

Monday, December 5, 2011

How does it feel?

I have been receiving amazing feedback from the labs that we are funding, AND from the clinicians we are communicating with on a regular basis. My surgeon at Dana Farber walked in the room the other day to have a look at a suspicious lump (that turned out to be a pec muscle on a skinny body) and before he said hi, he started to excitedly talk about how his patients are all interconnected as a result of Angiosarcoma Awareness. Another clinician at MD Anderson has echoed these sentiments letting me know that all of his "new" patients know all about him as well as other clinician experts in the field as a result of our collective efforts.
The lab that we are funding at Sloan-Kettering is getting ready to publish two papers on angiosarcoma that will reveal another possible target for therapeutic intervention. The lab in Minnesota that we are funding is getting ready to enroll the first doggie patients into a clinical trial that will hopefully cure us and "our best friends".
The Chief of Sarcoma and Melanoma at Sloan-Kettering, Gary Schwartz MD, had this to say when we asked him for his thought's on what we are doing:

"Angiosarcoma Awareness has brought much needed attention to this rare
disease. As a result of this groups efforts, there is now a large scale
scientific endeavor aimed specifically at understanding what drives
angiosarcoma. This is already being translated into new clinical trials for
patients with this disease"

I'd love to reflect on all this wonderful news with a sense of accomplishment and pride, but until I can add the line, "Angiosarcoma used to be a deadly aggressive form of cancer but can now be effectively treated by....", I will only feel driven to move faster.

Thursday, December 1, 2011

At home with a sick child is better then it sounds!

My little Charly came home last night in tears because she felt so awful. "Mommy, help me" she sobbed. I held her warm body close to mine and began the instinctive rock that humans set in motion millenia ago. "It's ok, mommy has you" was all I needed to say to calm her down. We're spending the day at home today. Sick = special time with me, Charly and a couple of mermaids on TV:)

Wednesday, November 30, 2011

Do more

We can all improve ourselves if we take every moment as an opportunity grow. Do more and you'll get more out of this life.

Sunday, November 27, 2011


I love our Thanksgiving's on the farm. My immediate and extended family go down to Virginia and let loose on 90 acres of rolling hills, woods and cow pastures. Every year, I become more and more aware that there is a gene responsible for bad's a dominant trait in my family, one that I'm infinitely grateful for!

Saturday, November 19, 2011

salty faces

Maybe I've already written about it, but it's on my mind, so into the blog it goes..again. When Ted and I lived in Tennessee, we spent a considerable amount of time backpacking. We had two old army rucksacks and kept them packed at all times so that we could throw a couple of MRE's on top and head out for the weekend. Most of our trips were spent hiking the chasms of Big South Fork and Savage Gulf, with an occasional trip to the Smokies, or Mammoth Caves.
We'd leave on Friday afternoon's, drive a couple hours with our sandals on, park our car, lace up our boots, put on our rucks and go. Those trails brought us flowers in the spring, lush green leaves in the summer, deciduous colors in the fall and the ability to see the forest through the trees in the winter.
I always felt closest to where we should be, evolutionarily speaking, when it'd be just two humans and a fire and nothing else. The tracks of salt left on our faces highlighted by the flames on a chilly night, were tactile reminders of the physical exertion it took to get right in the middle of nowhere.
These experiences, along with the cumulative life adventures that we have shared continue to fuel my passion for being alive right now. So glad we decided against watching reruns of 80's sitcoms instead!

Wednesday, November 16, 2011

Tears on my black shirt

Every once in a while, I have to decompress. For the past year and a half, I have lived in a world that has smiling children on the one hand, and indescribable pain on the other. This morning, I was reflecting on some of the saddest moments that have touched me along the way. A mother typing to me with one hand because she was holding her dying child’s hand with the other, describing in real time how horrific it was to feel so helpless; a conversation with a man who is desperate to bring his wife a repreive from the physical agony she's been in for over a year..all the while, hearing her moaning in the background...
These are just a couple of examples of what it's like to live with an open heart in a world filled with despair.
I try my hardest to let these feelings drive me. The one thing I will avoid at any cost is to find a way to become immune to them. I never want to be someone who can be part of either of those conversations and to be just fine with it all. Sometimes this attitude leaves me with tear stains on my black shirts...guess I should pick another color when I feel the need to let these memories take their rightful place.

Monday, November 14, 2011


Hi everyone, thanks for all the support, just wanted all of you to know how much it means to me. Hope you have found at least one reason to smile today.

Thursday, November 10, 2011

Moving on

One of the silver linings of this disease is that wounds heal fast. There's no time to worry about things you can't change. It's as futile as trying to change a person. It's easy to regain your balance when you start from solid ground. My heart goes out to people who have a flimsy base and who falter in patterns during the short time we have to enjoy this world. All I have to do is look at my children and I'm grounded, when they hug me, I melt right into the fabric of the moment.

Wednesday, November 9, 2011

The good the bad and the disgusting

I have seen the absolute best in people this week, and I have seen the bottom of the barrel. At the top, there were scientists and patients so pure in their tireless pursuit to find answers and push the field of cancer research ever closer to finding better therapies. You could see the urgency in their eyes, they want to help, they ARE helping. But as is usually the case, the good was balanced by the bad and then the disgusting. I never thought someone would sink so low as to use our cancer for self gain, but it happened. We were infiltrated by someone who pretended to have angiosarcoma in order to gain money and who knows what kind of pathological thrill. I also lost the friendship of and respect for someone I valued immensely, someone who let a professional problem spiral so far out of control that all that’s left is a big disgusting mess. I have such vitriolic anger for both of the latter situations that it almost negates all the wonderful things that I had the opportunity to experience this week. Almost…..

Thursday, November 3, 2011

Why do I harass you so?

Do I ask for a lot? Yes. Why do I ask for so much and ALL the time? Here's my top 10 reasons:
1) I can't be on the receiving end of one more phone call that ends in "hospice is the only choice I have left" and then do nothing.
2) If I don't harass you, someone else will, and you'll crack at some point (since we humans are kind by nature) and give money to an organization that will likely have a CEO making over a million dollars a year. (look up any of the big ones and you'll see what I mean)
3) I don't watch TV and have too much free time on my hands
4) It's really working, the money that we raised in ONE year has already turned into a clinical trial for angiosarcoma patients..the first one ever!
5) What if this saves someone's life?
6) One day there will be a cure, it has to start somewhere and sometime..why not now?
7) Angiosarcoma has ripped families apart right in front of me. It is beyond devastating to feel helpless when peoples lives are at stake.
8) I don't have much of a social life
9) As a scientist, I understand how and why research is so expensive, I understand how and why there's not already a cure, I understand that unless we do it ourselves, it'll NEVER get done. This is the only way.
10) FUAS

We raise money directly through
We are also working with Sloan-Kettering's cycle for survival. If you want to contribute to the angiosarcoma research project currently ongoing there, feel free to contact me at for details

Thank you for taking the time to read this!

Monday, October 31, 2011

The road trip part II

This summer, we took the kids on a 3 week road trip into America. I wish that I could describe the beauty we encountered as well as even one picture taken along the way, but we all know how futile that would be. Instead, I'd like to describe some of the pictureless moments. After a couple of days, we each fell into a flexible routine that could be grafted onto whatever landscape we happened to be traversing. Ted did the day driving and I took the night shift. The kids, totally open and uninhibited, never wondered why they'd fall asleep in the plains and wake up in the Rockies, or why they'd need winter coats one day and bathing suits the next. They were just eager for the Frisbee to be tossed, or the horses to be saddled. Every morning before the coffee was made, Charly would crawl up into Robby's nook, the two of them would snuggle while listening to music. Robby learned that when I get tired, I get silly, and when I get silly I have zero control of the situation. This realization culminated in many many displays of public embarrassment for the rest of the family. I think Maddy may have even rolled her eyes once or twice because of our antics. We know each other within the context of arches, mountains, rivers, lakes, deserts, sand dunes, forests, and bear tracks. No amount of daily grind can displace us from those memories.

Sunday, October 30, 2011

Snow = snuggle

I love the snow. When I was a child and the word snow was mentioned on the evening news, my otherwise unsophisticated thought processes became transfixed onto the 8th grade level words that were delivered by correspondents standing outside with thick winter coats. They were waiting for the first flakes to fall because their contracts told them they had to stand outside like idiots. I was waiting for the first flakes to fall because it meant a possible snow day, a transformation of the neighborhood, hot cocoa, a fire, marshmallows in the aforementioned hot cocoa, snow men, snowball fights with the entire neighborhood ect....

I never lost the thrill that I got when snow is in the forecast. Ask me in late February and I'll say the same thing.

Now, I get to see this love build in the warm hearts of my babies. They are too cute all the time, but put them outside with mouths open waiting for the flakes to find their little tongues, and it's almost too much to bear!

Last night we ate a giant pot of soup in front of a fire while watching Star Wars. Welcome back winter, let the snuggling begin!

Tuesday, October 25, 2011

Little bodies growing in my arms

Every morning when I drop off Maddy, I open the van door to a little girls who's pretending she's asleep. I play along and pick her up and carry her little body inside before handing her off to Gina. We've been at it for a while now...long enough for me to feel her feet dangling lower as the months pass by. I can feel my babies growing right in my arms. Charly's so big now, I have to put in effort just to hoist her up. Every time I pick them up, I win.

Saturday, October 15, 2011

Cancer shmancer, let's cure them all!

When I first jumped on board with angiosarcoma awareness, my mission was to get some research done by directly funding labs. I could never have anticipated what would unfold from these efforts. In addition to our success in raising funds, I have discovered that opening up a dialogue with scientists and clinicians interested in this orphan disease can lead to inter-institutional collaborations. As a result of the network that we have weaved, major grants are being co-written by talented researchers who are dedicated to the mission of eradicating angiosarocma! Although we've raised quite a bit of money, science is expensive, and multi-million dollar grants will fuel this area of research far greater than anything we could possibly do alone. By no means am I trivializing the efforts of all who have donated, to the contrary, that "seed money" has and continues to ignite the field!
I feel strongly that ALL orphan diseases could benefit greatly by modeling this system. I'm calling it the one year plan, from disease non grata to R01 (that's a nice fat grant for all my non-geeky friends). Here's a breakdown of the top 5 lessons that I've learned, maybe they could be grafted onto other diseases that suffer from obscurity. You just need a dedicated biomedical researcher with no need for sleep to get the ball rolling:)

1) Clinicians and basic researchers who are thriving while studying diseases that get little or no government funding are reallllly good. While other researchers are securing nice fat grants, they are publishing on the backs of non-profits (like ours!) which don't offer large multi-year pay offs. Basically, they are able to stay afloat in a publish or perish world holding onto a little yellow ducky.

2) The dedicated few who are actually interested in your rare disease, welcome collaborations with open arms. They are passionate about their work and if you provide them an avenue through which they can answer their questions faster, they're eager to participate.

3) Basic research advances from the publications of others in the field. If you think about a paper, it's like the tip of a pyramid, you couldn't possibly describe all the results, all the reagents, all the resources used to generate the "highlights" that make it to publication. If you engage with researchers who have published something interesting, you WILL find out more, and that more can lead to an entire project with like minded researchers. Scientists often have no idea what's going on in related labs outside their publications, so just getting them to talk to each other can lead to the birth of a new that is already in the current funding mechanism of the labs!

4) If you open up your search parameters from those directly studying your disease, to those studying related diseases that may have some overlap, you could potentially tack a project onto one that's addressing a larger indication. This may draw researchers from other areas into your field if you can make a case for the disease being a good model system, or having some, ANY relevance to their research.

5) More projects lead to more data which leads to more publications which draws in more researchers. Once there is enough compelling data to suggest that the mechanism of an orphan disease has been discovered/and or a cure is in the works, the government will take a closer look at grants that are submitted and the field will continue to grow.

5b) This should be 6, but I said upstairs that I'd only write 5. Bridging the gap between clinician experts and basic scientists is 100% necessary for there to ever be a clinical manifestation of the basic findings. Just getting clinicians up to date with current basic research can result in the administration of brand new compounds that might not be FDA approved on label, but are a better option than hospice! There could be a million different cures sitting on someone's bench in a lab, but if the clinicians don't know about them, they might as well be tick tacks.

Wouldn't it be fabulous if we could convince scientists to do a little pro-bono work? Can you imagine if scientists picked a fledgling charity and for one year, got as much done as possible?

Thursday, October 13, 2011

If you had a rope

If you had a friend at the bottom of a sinking trench, would you throw a rope over the edge so that they could try and pull themselves out? Would it be ridiculous for the friend to ask for that rope even if it cost 50 bucks? Can you imagine thinking to yourself, "well, I know that it could save their life, but I really just can't be bothered, anyways, that's an entire tank of gas!". Our lives for a tank of gas......

Tuesday, October 11, 2011

Maddy's 4

When we snuggle and her little legs are curled up against me, she still seems so little, but my Maddy is 4. She's old enough to remember life, to let the moments that are defining her take root in her mind. I was horrified when I thought this disease was going to take me out within months of my diagnosis. The most painful aspect was the thought that my children would have to build a patchwork vision of their mommy upon an unsturdy frame of pictures, videos, this blog and word of mouth..never knowing if their memories were theirs or just reflections of what they saw from 2 dimensional static images. My children know me. They feel my love throughout their growing bodies, they anticipate the next steps in our routine. They will never loose the feeling of my touch, my heart beating next to them, my arms wrapped around them. Happy birthday my beautiful little unicorn, I love being here in the moment with you.

Monday, September 26, 2011

When in doubt, do everything!

What a strange twist of fate my life has taken. Find happiness, get one of the most insidious cancers evolution has thrown at animals, try to cure it in between scans, get three full time jobs to balance with a wonderful husband complete with a couple kids a puppy and a cat, look for happiness but fail miserably because cancer worlds are horrifically sad, stop looking for it and find happiness anyways. It's certainly not how I had it scripted when I was a little girl, but then again, I also didn't grow up and marry the life guard at my pool like I thought I would (Dave, is it too late for us?).
One thing I've learned: Don't just do something when faced with a challenge. Do everything, and when that's done, do more. We're ALL capable of so much more then we realize. Sometimes it just takes a grizzly bear chasing you to know how fast you can actually run.

Thursday, September 1, 2011

life right now

Pretty busy lately, all in good ways. At the ends of my days, I come to pretty much the same is awesome. I'm not old, but I don't have to be to feel fulfilled.

Tuesday, August 23, 2011

420 Old Millbury Street

Every morning on my way to drop the girls off at day care, I always ask if they want the highway or the back roads. The answer is always the same, so we have become very familiar with the streets of Millbury. At 420 Old Millbury street there was an unusual sight that didn't quite fit in to the sometimes manicured, sometimes bucolic landscape.
An old rotted out tree stump cradled a baby pine tree. Maybe a bird dropped a seed at just the right moment and it found itself in the perfect dewy niche in which to germinate. This would be a perfect spot to start off life. Raised above all the shrubs, there was no competition for space or light, no lawn mowers to thwart it's sprouting, no snow plows to bury it until summer. So it thrived, this brilliant green life growing out of the hollowed out carcass of another tree. But I always wondered how long this untenable situation would be sustained. Sometimes a life with a perfect beginning is destined to be felled early. Just the other day, I saw that the owners had cut down that old stump and with it, that new tree. I wonder if they ever noticed it. I wonder if it's replanted somewhere in the background of our drives.

Wednesday, August 10, 2011

magic night

On my drive home with the girls tonight, we found magic. I told them to look up into the eastern sky because the glowing pink clouds had caught my attention. Little did we know that as we grinned at that sight, a giant smile would overtake our faces when we rounded the corner and caught a glimpse of the sun setting behind a cotton cloud that was outlined in all directions with a fluorescent pink glow. There are sunsets, and then there was the sky tonight. We pulled over to make sure that our memories wouldn't be clocked at 60mph and watched as the color began to fade from the edges of the clouds. Down the road we rolled, into a patch of twilight fog. As we emerged on the other side, we saw a baby deer standing right before us. Charly and Maddy both gasped with excitement. "Are we dreaming mommy?" was asked first by Charly and then by her little sister. "I think we just may be" was the only valid response I could give. We watched the sky the whole way home, and as the night crept up on us, it drained the last rays of color from that cloud. We talked about how lucky we were to have left when we did, to have stopped when we did, to have our eyes open when we did. Too bad the only music I could find to accompany this was lucky star by Madonna. Guess every cloud has a grey lining.

Monday, August 8, 2011

Road trip Faux Pas I

Having just come back from a 3 week road trip with one hubby, 2 little girls, a teenage boy and a 1 year old puppy, there are certain things I want to jot down before they fade into general feelings rather than distinct memories. The trip was amazing, we are all better for it, closer to each other and full of laughter, but I always enjoy the bloopers first, so here are the most most memorable.
We rented a 29 foot coachman RV with a bathroom, sink, hot water heater, shower, refrigerator, propane tank, oven/stove, microwave, generator, TV/DVD player, awning, and a partridge in a pear tree. Before we drove this behemoth off the lot, we were given a whirlwind 30 minute tour of the do's and dont's. Needless to say, not all of it stuck in our vacation ready minds. The extent to which we were clueless became readily available to everyone in the parking lot of the Loves truck stop off route 40 in Baxter TN. After circling the facility a couple times, we stopped to ask a trucker where exactly the dump station was. He looked at Ted as though he were a dump station. The woman inside the stop was more helpful and told us where we needed to be. It just so happened that the sprinkler system also needed to on in the same spot. It didn't occur to us until after the first couple passes that perhaps we should roll up the windows..all of which were being assaulted by the high velocity water being shot seemingly only in our direction.
After what felt like 12 years or so, the attendant came out to unlock the lovely hole in the ground, otherwise referred to as the dump station (so apropos). As we were "dumping", we decided to fill up our water tank, all the while, trying to dodge the heat seeking water missile that Ted ended up physically twisting into an unsuspecting trucker who was either fast asleep or too afraid of the angry stomping dumper to say anything about it. Maybe he wanted a clean truck? At this point, the dump was flowing, the water hose was hooked up to the RV and Ted and I were soaked. We sat there for another 12 years filling the water tank, which never really filled. Screw it, we can get more water down the road we thought. Back into the RV we climbed, wet, wet and more wet. It wasn't until we stopped for more water the next day that we realized we hooked the hose up to the wrong part of the RV. The fact that water was spraying out both ends of the hose with enough pressure to create a half assed diamond apparently was not a big enough clue for us that night. So we rolled on, waterless and one step into "the road trip faux pas".

Saturday, August 6, 2011

Jen Goodman Linn

No matter how sick my friends are, it always comes as a complete and heartbreaking shock to me when I find out that one has passed. I am in disbelief that she's gone. Her voice still resounds in my thoughts. I truly hear her. The last correspondence I had with Jen was an email I sent quoting George Carlin on the subject of just where in the priorities of the day people place us when they say, "you're in my thoughts". Needless to say, the quote itself is not blog appropriate, but was appreciated in my own private email. Never the less, Jen is in my thoughts, and for the sake of clarifying this from the platitudes that she worked so hard to distance herself from, I want to state exactly where she is. She chants a fearless mantra every time I let my mind creep in to the labyrinth of morbid possibilities, she urges me to remain steadfast in my pursuit to aid in the human fight against this disease, she reminds me that nothing, not even death, can stand in the way of a fulfilled life. I hear her voice crystal clear as though she's sitting right next to me. She's in my thoughts, right at the forefront, right at apex of the battlefield.

Wednesday, July 13, 2011

All the wonderful people

I would like to take a moment and reflect on some of the awesome people whose worlds have collided with my own over this past year. Parents who have fought along side their children, yet who are still able to carve out time for the rest of us, children who hold up their parents that are afflicted by this disease, friends who'd give their lives for a cure, spouses who articulate the pain of their agonizing loss in one breath and then tell a joke in the next, random generosity from strangers, and that from close friends. Life is stripped down and raw and for the past year, I have interacted with people who are so far in the trenches of biological warfare that there's no hint of bullshit, no room for even the slightest waste of time. It's real here, now..and the people that I've been lucky enough to meet are as real as it gets.

Tuesday, June 28, 2011

clean scans old friends

Clean scans. The first time I heard these words uttered from my doctor, I felt like the weight of the world had been lifted from my shoulders. It seems like the world has gotten heavier though, and as much as I rejoice in my good fortune (this time round), I can't help but immediately think of what my many friends are going through(have gone through) when the news regarding their scans is "dirty". Mostly, I miss my friends who have succumbed to this disease.
I had my follow up today at Dana, and on my way home, I went to Prana, a raw restaurant outside of Boston that I used to go to with Bethany. As I sipped my immune boosting carrot smoothie on the drive back to Worcester, I went over the details of our friendship. Every word that past between us, the sound of her voice, her smile, walks we took when she was "healthy", and the ones we took when she was in a wheel chair, every part of our time together is vivid and alive within me. I cherish people like poetry, I keep them deep within me so that I can visit them always, and continue to learn from them whether they're there..or not. I suppose that all of us that participate in a cancer support group are vessles of memories. I think we all get how important it is to realize how vast and deep the impressions are cast within us as we develop friendships with other people who are part of the struggle.
I'm so happy to have a clean bill of health right now, I'm so grateful for my life and this crazy path that's allowed me to pierce through anything even close to being commonplace. More time with my babies, more time with my husband, more time with my family and friends...more time with my memories too..

Tuesday, June 14, 2011

Don't piss it away

Not to steal blatantly from John Lennon, but imagine if everyone actually lived to their potential. What would the world be like if we didn't watch TV, if every decision was carefully weighed, if we really thought outside ourselves and opened our eyes to the rest of the universe? The single most annoying phrase to me is, "I'm bored". If you could take one second and freeze it in time, it'd take an entire life to exhaust all the possible ways of looking at it. Yet it rolls, unfolds and creates itself as we take each step. Enjoy it, don't piss it away!

Monday, June 13, 2011

6 years and 2 days of Charly Painter

Every night when I tuck my little angels in, I ask them if they still have their magic. After 6 years and 2 days, Charly still says yes. She and I both know that she's answering the underlying questions, "are you happy, are you creative, are you innocent, do you love life, do you believe in Santa, do you fill your imagination without boundaries?" I love the feeling of her head as she nods yes while we hug. She and I both know that this is how I get my magic. I'm grateful beyond all words that I've been able to tuck her in every night for this past year. Happy Birthday Beauty!

Monday, June 6, 2011

Commencement, Umass Med School Style

I shed a tear at commencement when Arthur Pappas was given an honorary degree for his many MANY years of service as a sports medicine doctor. I have a soft spot in my heart for little old men, so when they wheeled him out and honored him, he trembled with pride, and I broke like a little girl. I love when people are good to each other.. it makes the injustices that we all mediate a little less pronounced. I think that the kindness bestowed upon that gentle man on stage somehow erased negativity somewhere else in the world.
The rest of commencement was just as one would imagine, long gowns on a hot day, speeches from people who were engorged with the moment, palpable closure as we stepped off the stage, degrees in hand. It may have been a long LONG tough road, but it was definitely worth it. THE END!

Thursday, June 2, 2011

Jen Goodman Linn, you are one bad MF(H)

Today I'm wearing my cycle for survival long sleeve jersey. I wear it to honor two women who continue to inspire me every day. Alyssa, who lost her battle to angiosarcoma a couple months ago, will forever be a part of every step I take. Jen Goodman Linn, who is fiercely battling MFH, is not only shaping the contours of my life, but has changed the entire landscape of rare cancer research. Jen, and her husband Dave, started cycle for survival in 2007 after being diagnosed (in 2004) with sarcoma. When handed a diagnosis of cancer, everyone fights. We all do what we can to survive, not just in years, but in this one moment. We fight for our sanity, we fight for our loved ones, we fight for one more minute in order to be engaged in this world. Sometimes however, people are inspired to carry the fight beyond themselves. Jen is the poster child of how to fight for all people with rare cancers. Beyond the 9 million dollars that cycle for survival has raised for rare cancer research at Memorial Sloan-Kettering, Jen has taken it upon herself to help people in ANY WAY imaginable. Want to be inspired by a modern day Bodhisattva? Check out her blog and see how she lives! Want to help her grow a legacy that will outlive our entire generation? be part of the cycle for survival movement!

Tuesday, May 31, 2011

Clawing my way back onto the happy wagon

No matter how fast or slow the wagon moves along, there's always a chance of falling off. Sometimes, I'll peak over the edge of the carriage to see just how far down it is to the bottom, other times I'll lay back, snug and secure, and make make faces out of the clouds above. I don't know what compels me to hurl myself off, but from time to time, it seems like the thing to do, but it never turns out to be a good idea. I think I snuck off the happy wagon sometime during my thesis writing and forgot to take notice of what direction it took. I always forget that I need to wait for it to come to me. If I chase it, it moves faster, grows thorns, and hides down dark alley ways. It's only when I remember to let go that I have the firmest grip.

Friday, May 27, 2011

Back on the trail

When Ted and I lived in TN, we would go backpacking at least 3 weekends a month. We may have fallen in love at the drop zone, but we grounded our relationship on the trails of Savage Gulf and Big South Fork. After moving to New England, we spent some time hiking the Whites, but for the past 5 years, I've been preoccupied with children, and ...other things... and have only been able to squeeze in the occasional trip to Monadnok or Watchusett for a day hike. It never fails though, put me on a trail and I end up walking back in time. It's as though time has a place holder for me, and when my boots break the first twig, I'm invited back into the moment. We went to Crow Hill, taking the long way in so that we could hike and climb. Ted carried all our gear, but we ended up on someone elses rope, so the extra tonnage on his back was totally unnecessary. Oh well. We were back where we were always meant to be, embraced by a gentle breeze on a hot day with nothing but the next step to worry about.

Wednesday, May 25, 2011

The Defense

Ted and John suggested that I wear a flak jacket and Kevlar helmet to my thesis defense, but I didn't want people to think it was ok to actually start shooting at me, so I wore jeans, a pair or Robby's old Vans and a button down shirt instead... Charly asked why I was so dressed up:). I like to present, so i wasn't nervous about getting up in front of all the smarties and selling them my science, I was however a little worried about the general audience just never know what chink they'll find in your armor. It was all good though, I got through the presentation with only one set of eyeballs struggling to stay open, the questions were more out of interest then out of "what the hell did you just say-ness", and the defense was actually kind of fun. I think the general expectation from people was that there would be this tremendous weight lifted off my shoulders as soon as it was done. The weight didn't actually fall off when I was called Dr. Painter for the first time, in fact I decided to carry it around for a couple more days, maybe I was afraid of the unbearable lightness of being (thanks Kunderda). It's only been within the past day or two that the, "I'm really done" feeling has started to sink's niceeeee. I've been watching cheesy movies and snuggling with by grad school quagmire!

Friday, May 13, 2011

#14 Make believe story

I love making up stories with my little girls. They tell me an animal, give me it's name and give in broad strokes what adventure the animal is to go on, then I make up the story. Charly's old enough now, but I want to wait til Maddy is old enough to illustrate these stories so that we can publish a series of childrens books:) Here's one from last night.

Elizabeth the Pink Striped Zebra:

Once upon a time there was a Zebra named Elizabeth. One day she was drinking from a pond when all of a sudden a frog croaked up at her and said “ribbit ribbit, why do you have pink stripes?” Elizabeth looked back at the strange little frog and said, “What on earth are you talking about, my stripes are just like all the other zebras.”
“Well, they are the same shape, and they are the same size, but they ARE PINK!” he insisted.
Elizabeth went back to her heard and asked her friends if her stripes were different. “No, of course not” they all replied. “They’re just like ours”.
Feeling better about things, Elizabeth went out for a run when all of a sudden she noticed a bird was following her. “What is it? Why are you following me?” she asked.
“Because my dear zebra, I’ve never met one of your kind with pink stripes!” the bird replied.
“What?” Elizabeth asked astonished, “have you been talking to the frog?”
“Frog? Yum yum where’s the frog? I love to eat frogs” the bird merrily chirped
“Oh my, I don’t understand why you both would say my stripes were pink hen they’re not! They’re just like every other zebra’s”
“Tell me Elizabeth, what color is the sky? The bird inquired
“Grey” she said
“And the grass, what color is the grass?”
“Grey of course” said Elizabeth
“What about a rainbow? What are the colors there?” the bird asked.
“Oh, that’s easy” she said, “grey, grey, grey, grey, grey, grey and grey”.
“Oh, I see the problem” said the wise old bird.
“Problem?” replied Elizabeth
“You don’t see colors, you and your friends don’t see that the world is painted with fantastic colors, so to you everything looks the same.” Said the bird
“Does that mean I look different to you?” she asked
“You look stunning, but you’ll have to trust me that you’re one of a kind, even if you can’t see it yourself. I can see it, the frog could see it, and I bet that there are creatures that you’ve never even met that can see it.” said the bird.
Elizabeth returned to the herd. She knew she was different, even if no one else could tell. She wondered if each of her friends had something unique about them too. Maybe she’d be the only one to see it… if she looked hard enough.

Sunday, May 8, 2011

Best Mothers Day Ever

There most have been 40 "I love you mommy's" 25 "mommy, you're the best's", 200 hugs, 1,000 smiles and a giggle or two before the end of lunch. Each one of these sentiments flowed into my parched soul and filled my veins and arteries as though my heart itself was pumping them. My babies made this day so special for me simply by being happy. I loved the warm sun, the bare feet, the frisbee, the flowers, the indulgent lunch (and dinner), the lizards on the playground, the singing (with the voices of the mountains), but best of all, I loved the way my babies loved each other. This is simply the best that life has to offer, and man is it good.

Thursday, May 5, 2011

Vera, oy vey

This past year has been chocked full of physical, psychological, emotional and intellectual challenges. I can't say that it was all pretty, nor can I claim that I handled it all with grace, but who the hell could keep it all together all the time under these circumstances. I'm kind of proud that I don't have a custom fit white coat waiting for me in my own personal rubber room. Writing my thesis was a little like torture. I've never personally been water boarded, but there's no way any more information could have been retrieved from my brain regardless of the extraction method. Throughout the balancing game I played with the thesis writing, the family raising, the angiosarcoma fundraising and scientific development on one hand, and the feeling of standing helpless as I watched too many friends suffer and die from this god awful disease on the other, the resounding thought that I could NOT shake from my brain was, why , WHY did we get a puppy?

Wednesday, May 4, 2011

Moulting away on the thin ice of a new day

Ted just looked at me and said, "you know what today is, right?". I searched my brain and said, "yup, it's May 4th". "No no, it's been a year since time stood still". He was right, my first angiosarcoma diagnosis came one year ago today. I wish I could go back in time and give that scared little girl a hug and tell that scared little boy that it was going to be ok, no matter what. I feel like we've changed so much that we should have a matching set of moulted skin hanging in the closet as reminders of how much we've grown.

Saturday, April 23, 2011

I'm still alive

My brain is 100% in full blown scientific writing mode, needless to say, I didn't want to lull you all to sleep with talk about crystal structures and concerted conformational changes. Within the next two weeks, I'll have a paper, a review article and my thesis written...shweeeuuuooooo. All is well, kids are great, hubby's fabulous...still pretty pissed off at cancer for screwing with my friends, but other then that minor distraction (haha) I have nothing to complain about. Night night y'all.

Tuesday, April 12, 2011

all the writing

It's amazing that I can be so inept at spelling with all the writing I have to do. Oh well, whose/who's counting?

Monday, April 4, 2011

busy girl without tumors

All work and no play makes Corrie a dull girl, but BUT I can be dull and cancer free no problem! Now it's time to get all my friends in the same boat. I don't mind the work, but when every little thing is a tumor, it tends to mind f' you. Now, I can just work, YAY tumor free work!

Saturday, March 26, 2011

a rose by any other name

I have been to two Catholic funerals in as many months. At both occasions, I tried to observe with as un-hethonistic an eye as possible, the piousness, the traditions, and the faith of the mourners as they took part in a farewell Mass for their loved ones. I'm a firm believer that we can imbue life with whatever meaning we want, so why not dig deep into every moment and see what turns up? To say that there were many profound moments at Alyssa's funeral today is the understatement of the year. Her mother asking that we all be a little more kind as a legacy for her daughter, the Priest sincerely upset that he had to console a family who had been there 6 months prior to bury Alyssa's brother, the trembling voices of her friends as they read scripture. In the background of all of these moments were the mourners with clasped hands either holding back..or not, their tears.
As I took all of this in, I couldn't help but find beautiful interpretations for things I didn't understand. The incense produced a cloud of smoke that rose up into the heavens, but for me, it represented a physical presence that we could all see, a common vision that seemingly disappeared. I was sitting in the back of the church, so it took a couple minutes for it's aroma to reach me. Then it occurred to me that there it was again, the same presence, nothing had actually changed in it, it was just diluted into the air and had become perceptible through a different sense, yet in a way that was still common to us all. Maybe we aren't capable with our meager 5 senses to perceive what happens to the essence of people when they die, but it was a very moving realization for me that if we keep an open mind, then we keep open the possibility of finding our friends brushing up against us in the wind.

Thursday, March 24, 2011


You can take our friends, but you can't take their spirit. You can take our lives, but we'll shine on regardless. You can silence our mouths, but our hearts will continue to beat in those who love us. You can win some battles but we'll win this war.

Wednesday, March 23, 2011

Alyssa Ann Acquafredda

"I don't understand this Cor, how can they be telling me that everything looks so bad when I hardly feel anything?" These were the last words that Alyssa said to me a couple weeks ago. Alyssa was going to be the one who beat this beast, she knew she would and because of that, she did. I could say how much she meant to me, how much I respected her, how she was my hero, how I'd never met anyone more alive then her, how her energy was so beautiful you could feel it through a brick wall, how stunningly gorgeous she was inside and out, how optimistic she was, how inspirational she was, how strong she was.....but all these things put her in the past where she doesn't belong.
I've known for a couple days that her passing was imminent and have been feeling around for that callus that's supposed to develop after wounds begin to heal. Maybe it's because there's not enough time between the passing of my friends, or maybe it's because of the depth of these incisions, but I am totally open and fresh, like a spring flower, to the torrents of this pain.
I am infinitely better for knowing her and will try to incorporate her unique ability to shine into every moment of my life and in that way, I hope to honor her. And as we fight, I will always know that Alyssa has her fingerprints all over the dagger that we're lodging into the heart of this beast.

Monday, March 21, 2011

Riding with Rob again

I love taking Robby home after the weekends. It gives us a chance to listen to music (which we have identical taste in) and to be silly down to the soul. Yesterday we hit some serious traffic on the Mass Pike and did what every mature set of humans would do, we rolled down the windows, turned the music up and made faces at all the curmudgeons groaning about life in traffic. Rob's fro sealed the deal. When we rolled up on people with him bouncing to Trey and his fro following in time about 1/2 a second later, they either gave the "Oh god, WTF is that look" or they laughed hysterically. Either way, it was a distraction for them from an otherwise moment in their lives that would have been considered "wasted". I love that kid because he see's it the same way. Savor it!

Monday, March 14, 2011


Ted is out of the house most mornings before the rest of us wake up. This morning, I woke up to Maddy at the foot of my bed, which usually means that she's hungry and wants me to get up to make her breakfast, but not today. Today she wanted to snuggle, so she crawled up in bed and nestled right into my heart. I was somewhere between dreamland and consciousness as the rhythm of our synchronous breathing allowed me to realize how much we are a part of each other, how deep the bond is forged. Not a bad way to start off the day!

Sunday, March 13, 2011

Cliche of the day

I can't help myself. Life is a gift, sometimes though, you need to rip all the pretty wrapping paper off, roll it up and cast it aside in order to see what's really there. I'm so grateful that I have this chance at the party.

Saturday, March 12, 2011

Little girls, little women

Charly is definitely at the age were she would be mortified if she knew that I kept a blog with a picture of her ummm, adjusting her bathing suit, if you will. Those little girls are growing up, and every little milestone that may seem insignificant in an otherwise busy mom's life, is like a step toward freedom for me. Not to sound macabre or doomsday-ish, but having small children while facing "dismal" odds does weigh in on my general thought processes from time to time..haha. More then anything else in this world, I of course want my children to be happy and strong. Tonight, Charly made meatballs all by herself. Whoopty doo, a child rolled meat in her hands right? Wrong. My child prepared a meal! She mixed the ingredients, just as I had taught her, kneaded the breadcrumbs and spices together, and made perfectly sized meatballs, with the exception of one ginaormous one for daddy:). We stood side by side chatting like girlfriends, and all I could think was that there's one more tiny little thing in her world that came from mommy.

Thursday, March 10, 2011

If you have to ask how we are..then don't

Disclaimer: I'm not in a good mood, so this is me venting. Let me start off this post with one giant apology to everyone I'm about to piss off. Sorry. Now, to move on to the root of the matter. For the past year I have been shrugging off the "How are you's" from people who do nothing but pity me. I think I reached the point of no return when I went down to help my friend who just lost her husband and heard too many people ask her if she's "ok" or wanting to know "how she is". What kinds of questions are those? How exactly is a grieving wife supposed to answer them? Those questions should have some sort of universal mute button that is triggered when people thoughtlessly open their mouths in the face of tragedy.
In my life, I go about my day perfectly oblivious that I'm supposed to be scared, sad, and pitied, until I am greeted with the tilted head and inevitable and usually condescending "how are you, feeling good?" It's like finger nails on a chalk board and all I really want to do is scream expletives, but I of course either turn and ignore the person in classic Corrie style or I play the game and nod my head the same way I do every day to those repetitious words. Basically, the people that I confide in, already know how I'm doing. If you feel the need to ask, please keep in mind that those of us on the receiving end of your "outreach" may not feel like divulging how we "feel" at that moment that you caught us in the hall on the way to the bathroom. Typically, we just want to go to the bathroom. Should you find us crying in a shrunken heap on the floor of the bathroom, perhaps that's an appropriate time to ask if we're "ok". I know that everyone is well intentioned and that people just don’t really know what to say, but I’m here to let you know that saying nothing, or hello, is way better then unloading your perception of our tragedy on us at every awkward meeting.
Ahhhhhhh, I feel so much better now..thanks for asking.

Wednesday, March 9, 2011

A beautiful legacy

We stood inside the funeral parlor taking in the pictures, flowers, plants, and other testaments that people brought to honor Brad. I stood by her side as she took a deep breath in and let it out knowing that the doors would soon open to the rest of the world that was grieving for Brad, for her, for their family, for themselves.
Brad was very loved and it was moving to see the sincerity on the faces of people trying to convey their heartfelt sympathies to Gina and the rest of the family. I think I speak for all her friends when I say that she was so strong as she gracefully accepted those sentiments along with the hugs, and the condolences.
Gina's friends had arranged the service such that a few people would come up and read from a book of memories that she had made for Brad this Christmas. This book is an amazing legacy for Brad and is filled with stories from his many friends that Gina had gathered together in order to give to their son Max so that he would know EXACTLY who his father was.
Her friend, Kristi (or Christy, or Christi, or...) gave an extemporaneous introduction to the service and the meaning behind the book. For the entire day leading up to this, none of us knew if we'd be able to read. We each had a fall back plan just in case we stumbled and couldn't go up or became overwhelmed and couldn't finish our piece.
Gina went up first and I stood by her side...just in case...but she was so strong, she set the tone for the rest of us. Their friends Josh and Megan each read one story from someone else as well as their own. Megan was great as she read a letter from their friend Craig, who shared a love of Beavis and Butthead with Brad. I don't think she was prepared to say anything even remotely close to the word bunghole at a funeral service, but she did and she got many laughs from people who had been crying just a second before. I went up next and was followed by Nettie and Adrianne, Brads mom and sister. Nettie also made the mourners laugh...a couple times.... I was so impressed by her strength and ability to articulate so clearly her love for her son. It was also moving to listen to and watch his sister bring us all a little closer to who Brad was. Patrick was the last to go up, he read his letter to Max which included many of the touching Haiku's that Brad often wrote.
I think by the end of the service, everyone in that room knew Brad a little better. We all came from different parts of his life, we had different memories, but sharing them together allowed us all to experience him as I can only imagine he would have wanted us too... as someone worth such a beautiful legacy.

Friday, March 4, 2011

Brad Blunt, climb on

Ted and I used to rock climb every weekend that we weren't backpacking when we lived in Tennessee. There was a crag a couple miles away from our house with hundreds of bolted routes and at this place the most diverse assortment of people would gather to share ropes and routes. One fortuitous weekend, we met Brad and Gina there. We were all a little freaked out when over the course of a couple climbs it became apparent that we were the same people. Among many other similarities, Brad and I were both scientists and Ted and Gina were both fitness gurus. It was such a natural fit that we didn't have to go through the normal steps of forging a deep friendship with them. They would drive up from Memphis, climb with us, go out to Mexican food (a favorite tradition by all), come back to our place, play ridiculous games with lots of alcohol, crash and do it all again the next day.
I remember like it was yesterday when Gina called me and told me to sit down. I immediately took the edge of the tattered leather chair in our family room. Brad's sick, she said. She went down the list of possible ailments that could be causing his neuropathy and at the bottom, was the unmentionable. Neither one of us wanted to entertain that idea, so we talked about the likelihood that it was something else, anything else, cancer for God's sake. It took a while, but they eventually heard those words uttered from doctors who can do nothing for you when you're told that you have ALS.
Even though they lived in Kentucky and we in Massachusetts, we remained very close. Gina is one of my best friends in this world, we've been through so much together. The tipping point from laughter to tears happened a couple years ago, and I hope like hell that we can bring the balance back as she heals from the deep wounds inflicted not only by the loss of her husband, but from the entire process that led up to his death yesterday.
I always remember Brad strong, happy, laughing, silly, alive...... I love you guys so much.

Saturday, February 26, 2011

a hug and a kiss

I am thriving off life's little victories. Every day there seems to be something to be grateful for, today it was a hug from Charly and a kiss from Maddy. They can pull me so deeply into their worlds that mine doesn't even need to exist anymore. I'm so glad we took the time to make those little things.

Wednesday, February 23, 2011

we have no clue

Every once in a while, I become completely aware of how little we humans actually understand about the universe. We're like children trying to interpret ancient sanskrit etched in stone, rubbing our fingers over the textured surface but completely unaware that there are levels beyond our senses that will eventually reveal themselves to us, we just need to bide our time and grow.
We went to the planetarium the other day with the girls where we sat beneath images of galaxies colliding. I couldn't help myself from thinking that the universe is trying to become self aware as I attempted to use my feeble senses and tiny brain to understand the magnitude of our space time continuum. I feel like the luckiest animal in the universe to even get the opportunity to try and fail at such concepts. Maybe in another couple million years we'll get it. For now, I'll just keep my eyes open for shooting stars on which to hang my wishes.

Monday, February 21, 2011

A night on the town

A couple nights ago, I had to go to a formal event with Ted. Shopping for an evening gown that doesn't reveal the chicken cutlet that is supposed to take the place of my breast, made the already excruciating experience of shopping all the more fun. Needless to say, I found a decent fit that kept all of my (and lady grace's) secrets. When we got to the event, I was thinking that I was Corrie, but I was soon reminded that I was "the cancer girl". Sympathetic eyes embraced my body, searching for visible remnants of my fight. Voices that should have uttered cheerful greetings instead sullenly told me that I looked ok, despite everything I've been through. Did I get all dressed up just to be broken down by the misguided pity of people so uncomfortable that they were left babbling when confronted by someone who isn't living a static life? Luckily we sat at a table in anonymity with lovely people, who like us, were there to enjoy the evening. They had no idea who I was when we met, which allowed me to be who I am...Corrie.

Tuesday, February 15, 2011

The Giant Cancer Cure Conspiracy

One of the unfortunate aspects of having a rare cancer is that tragedy after tragedy unfolds before your eyes. We have a wonderful support group of people who have this insidious disease and we all try desperately to help each other, and we all suffer the consequences of loosing the battle each time one of us dies. We are fighters and we are strong, but we are also vulnerable and simply human too. Some of my more human thoughts are provoked when I am confronted by self absorbed people who blithely sail through life with no concern what so ever for other people. If there was less "me" and more "what can I do", we'd already have cures for many diseases that are just waiting to be funded. The cures are simply waiting in the imagination of scientists who are by the nature of the funding cycle, drawn to bigger diseases which affect larger audiences. As proof of principle, I am going to post some stats (check them out for yourself here: from the Leukemia and Lymphoma Society, where survival rates have QUADRUPLED over the past 5 decades as a result of intensive scientific research!

The five-year relative survival rate has nearly quadrupled in the past 49 years for patients with leukemia. From 1960 to 1963, the five-year relative survival rate among whites with leukemia was 14 percent. From 1975 to 1977, the five-year relative survival rate for all persons with leukemia jumped to 35.6 percent, and from 1999 to 2006 the overall relative survival rate was 55.3 percent. The relative survival rates differ by the person's age at diagnosis, gender, race and the type of leukemia.

From 1999 to 2006, the five-year relative survival rates overall** were:

Acute lymphocytic leukemia (ALL): 66.4 percent overall; 90.8 percent for children under 5
Chronic lymphocytic leukemia (CLL): 79.7 percent
Acute myelogenous leukemia (AML): 24.2 percent overall; 60.9 percent for children under 15
Chronic myelogenous leukemia (CML): 54.6 percent

So for anyone who subscribes to the notion that there's already "a" cure, but big pharma won't release "it" because they wouldn't make as much money, put these stats in your pipe and smoke it (although smoking IS bad for your health from what I've heard...). Oh yeah and if big pharma wanted to really make money off of cancer, they wouldn't let us die in a couple years, where's the money in that? They'd find a drug that just kept us going for decades, now that's what I call profit!

Monday, February 14, 2011

Valentines day

I love you Ted. We've brought two of the most beautiful people into existence together. Regardless of what is in store for our future, when I look at where we've been and where we are right now, we've experienced more then most peoples share love, laughter, sadness, disappointments, victories, smiles, and of course, goooood coffee. Thank you for buckling me in tight during this roller coaster ride, for using your strong arms to pull me back in when the belts have faltered, for holding my hands as they tremble, for being such a good father, for allowing me to get all my living in right now, for supporting me as I try and help my larger angio family, and mostly, for watching Seinfeld over and over with nary a complaint even though I know you'd rather be doing just about anything else. I love you for all this and more.

Tuesday, February 8, 2011

Bethany Richmond

She woke up in the middle of the night because something was rustling around her hotel room. As she lay still, peering over the side of her bed, she spied a little mouse. Not wanting to scare the tiny creature, she waited patiently until it meandered off to another corner of her room. When safely out of sight, she left a trail of crumbled potato chips that led to the door, which she kept ajar so that this sentient being could peacefully find it's way out in the middle of the night.
This was one of the first stories Bethany told me when we met in Boston during one of her chemo treatments. I can't think of another human being who would be more concerned about the well being of a mouse then themselves, but she was. Her focus was not on the blood red doxirubicin being infused into her veins, she was thinking of the cleaning staff that might find her little friend and possibly hurt it. I have never in my life met a more gentle person than Bethany. What an honor it was to know her, to be with her as she navigated so gracefully through pitfalls and avalanches and tsunamis and tornadoes and so much more. For the past week, I have asked up into the empty universe, why her? But then I become grateful that she was born into all of our lives and that her voice, her smile, her accent, her goodness, her innocence, her laughter, her bare feet in the sand, her independence, her tenacity, her strength, and her hope can now become ours.

Thursday, February 3, 2011

no title

For the parents of those who are suffering with cancer, there are no words to describe their pain. We all talk about how horrible cancer is, how tragic, but unless you've lived with it close to your heart, it's as unfathomable a concept to grasp as the notion of a never ending universe, or forever time. We try and imagine how many stars there are by looking up into the night sky, but our senses are dulled, the reality is cushioned by our atmosphere and lack of context. Parents are thrust deep into the expanse with no measure of comfort, only to be handed a more intense telescope through which to view the next galaxy of pain each time their child is delivered more devastating news. There are no words for them, there are no units in which to measure their suffering. To try and describe it in fathoms, in depth is trivial in comparison to the unbearable reality that they most go through. We have to help them, we most find a cure, there's no other choice. I am choosing to do something, will you?

Friday, January 28, 2011

f yeah!

We are doing it folks! Your donations have morphed into results that will be presented to us on Feb 4th during our first progress report at Sloan. I've said it to a few of our donors in personal communication, but I'd like to tell the rest of you that it's not just money, it's hope. Every dollar is bridging the gap between being totally f'cked and having a chance at better therapies. You can't imagine what it does to each of us when we see how many of you care enough to help out. We know you get it, and we love you for it. Thank you all soooo much!

Correction on my spelling rant

Apparently the blame lies solely on my father. I was informed by my perfect mother, who is feared by all scrabble players world wide, that she has nothing to do with my brain numbing spelling deficiency. Mom, hairs two you:)

Thursday, January 27, 2011

not being able to spell

It's my parents fault. That's right mom and dad, I'm calling YOU both out on this one. I couldn't spell before I went to high school, where I learned to party. I couldn't spell well before I went to college, where I lost most of my brain cells. I couldn't spell before I had children. So, if alcohol, more alcohol, a few other recreational non-alcoholic "beverages", lack of sleep, brain hammering science, pregnancy and the subsequent lack of sanity didn't do it, it has to be your fault that I can NOT and will never be able to spell (or even use spell check properly). Just sayin'.

It's not my fight, it's our fight

The other day I was walking down the hall at work when a colleague stopped to ask how I was feeling. Surprised by my answer of "oh just fine, thank you, how are you", she proceeded to look stunned that I wasn't falling apart, both physically and emotionally. "So, you just get up every morning and keep going?" she asked in disbelief. I guess from the outside, it may seem an alien concept to some that life is right now, and I'm entitled to live it in as fear free a manner as they are. Right now, I am so not focused on my place in the grand cancer scheme, but have my heart 100% wrapped around my friends who are deeper in the trenches. If you want to see tough, you can look into their eyes. If you want to know a warrior, you can talk to their parents. If you want to see the meaning of life, you can watch them fight for that next breath. I feel very privileged, I've learned so much about life and will continue to do so as we fight together.

Sunday, January 23, 2011

Saying goodby before I said hello

This afternoon I went to a memorial mass for Ken Coppola who died because we haven't found a cure for angiosarcoma yet. As I approached the entrance, I walked slowly behind an elderly woman who was trying to negotiate the slick side walks with a cane, at her pace I took notice of cars lined up along the side roads. There were so many people coming to say goodby to someone I never had the opportunity to say hello to. During the service, I tried to live as deep in the moment as I could, letting all five of my senses absorb what they could. I'll keep the smell of the perfume from the small woman with brown hair, brown eyes and a red scarf in front of me right next to the memory of her sweet voice which uttered the words "peace be with you" as she shook my hand during the service. The cadence of peoples sniffles matched the frequency with which they lifted their fingers to their eyes to wipe away tears as if conducted by the priest. The church itself, it's organ, stained glass windows, Eucharist cabinet, alters, sculptures, and pews will never leave my memory. Goodby Ken. I will keep you with me always. I made a promise to you once that I would do everything possible to keep your memory alive for Rocco. I will. I am. Your name and your picture will be part of everything we do and your little boy will grow up knowing that you made an impact on so many of our lives.

Thursday, January 20, 2011

Slacker cancer girl opens up her blog

I didn't realize that it'd been almost 2 weeks since I wrote in this here blog. My momma came up for a short visit which was wonderful. We sat down to play cards, spite and malice, and unfolded the score sheet that we've tallied for all the years I've lived in this house. To our astonishment, we had not played one game during the entire 3 months that she LIVED here with us when I was going through all the fun with cancer stuff. Guess we figured that cancer was so entertaining that we didn't need pedestrian games to occupy our time. None the less, it was nice to sit down in the midst of a respite and play a game.

Saturday, January 8, 2011

Clean scans and Uno Chicago Grill

Last time I went in for my scans, I asked whether it would be possible to receive my results over the phone. "No no", I was told, "I'd really like to see you in person". "In person" means a full day into Boston that starts at the anxiety crack of dawn and ends a couple years later, when the doctor eventually makes his way into my room, the one that might as well have my shadow carved into the sterile white walls for all the time I sit in THAT chair under THOSE lights. "In person" means that Ted and I both take the full day off work and Charly misses school (although she does get to see Gina, one of the few +++'s). "In person" means another crappy lunch in the cafe at Dana. The menu might as well read, stuffed fillet of cancer with a side of sarcoma, to accompany my frog in throat knot in stomach appetite. "In person" really doc? You read a report put together by someone else. What is it that "your person" is providing? I feel pretty strongly that "in person" = co-pay. Last week, I sent an email saying that I either get my results over the phone or I stop getting scanned. The day before yesterday, I got my results while eating lunch at Chicago grill, where I had the pasta primavera and a side of clean scans.

Wednesday, January 5, 2011


is a choice we are allowed to make.

Sunday, January 2, 2011

The Worcester Left

Maryland, Florida, Massachusetts, Colorado, Georgia, and Tennessee/Kentucky are states that I've lived in. It goes without saying that I've also driven my car in all of the aforementioned states. Maryland has it's share of road rage, the traffic around DC is a killer. Florida has a fair amount of geezer drivers who drift into on coming traffic, but every one's going so slow, it doesn't much matter. In Colorado, it was smooth sailing; snow, mountain passes, tourists, none of it seemed to impair peoples ability to get into a car and then back out at their destination without a rise in blood pressure and in one piece. Georgia and TN/KY also had road savvy drivers. And then there's Massachusetts. People in this state drive their cars the same way they direct their carriages at the grocery store. They drive completely self absorbed with absolutely no sense of spatial awareness. The light is green, I'll just turn left in front of that person because I want to. The light is red, but I feel like continuing, people will stop for me, it's me for gods sake. I've had to slam on my brakes, swerve into thankfully empty lanes, stop short at lights, flick off total strangers and yell obscenities to little old ladies because of the way people drive in this state. It's them, really, I'm the sane one, I swear it I SWEAR IT!

Saturday, January 1, 2011


We brought in the new year by taking the girls skiing. This has been the best year of my life so far! We skied to the point of muscle failure...that is at least for the muscles in my forearm that were responsible for attaching me and my children to the tow rope. After 7 or 8 months of TV atrophy, my poor little tiny body needs some serious YMCA time. Those girls had so much fun, and every smile on their face was magnified into sheer bliss on ours. I do believe that we've made a couple adrenaline who would have ever guessed that that would happen...