2010

The other day I opened up the overstuffed manila folder entitled "f#$king cancer b*&llsh*t" in order to retrieve some information that seems like it left my brain 10 years ago. Could it have only been a couple months since I placed it there? Surely this nonsense has been going on for my entire life. It's ludicrous to me when I reflect on the ancient memories of chemo and surgery. Maybe my brain found a way to encrypt those moments with the same threadbare architecture of faded memories that have long since lost their credibility as having really taken place.
2010, you certainly were interesting. Thank you for letting me close you out, for letting me read stories to my babies tonight, for letting me help new friends build a simple fire, for letting me tell the world and everyone in it how much I love them, for letting me get my sh*t together enough to build an army, for letting me feel the warmth of my new footie hoodie pajamas, for letting me see that my friendships transcend all attempts of description, for letting me see the true nature of the human spirit stripped down to it's fundamental goodness, for letting me realize what a gift you are. 2010, I can't seem to focus on all the tears your brought, at least not those cried in sadness. Thank you for that.

The golden rule

Why do we need anything more then this? We're such a young species and we've come so far so fast, but just think of where we'll be 1,000 years from now. I hope my contribution along the string of life that gets us into a smarter more evolved world will be infused with the golden rule. Can't imagine that that will ever get old.

Setting the standard low and loving it

I have never been one for conforming to social constraints, so whenever i have a valid excuse for gliding through life with as loose a hold onto "normal" as I can muster, I'm a happy girl. When I was pregnant, I used to go to work in my slippers..closed toe slippers of course, wouldn't want to get the lab in trouble. If other women could use pregnancy as an excuse to eat unlimited bon bons in a guilt free manner, why was I not entitled to my own sense of self pampering. Now that I can pull out the cancer card, I use it more freely then a spoiled teen with daddy's American Express. Tonight I had to run out to the store to buy some batteries for a gift that Robby opened and was eager to try. We looked for the cord to plug it in with but alas, the sales man neglected to inform me that it was sold separately, even after I had specifically asked him about just that requirement. SO off to the store I had to go. Not wanting to get out of my footie pajama's, I decided it was time to introduce the world to my white fleece jammies adorned with hot pink lips. Off to Cumberland Farms I went, beyond white trash. Did I care? No. Did anyone else care? No. I bought the batteries, gave them to the boy, saw a big smile on his face, got one myself and went on with the night. Oh yeah, I then went on to wrap all the Christmas presents with duct tape....

Joy to the world

A little over a month ago, my friend and co-worker, Kendra, approached me with a novel idea for raising money and awareness for angiosarcoma. Christmas Caroling. EH? Carol what? This concept had never entered the mind of this Jewish girl who grew up with a yiddish speaking santa claus who would dole out pez dispensers and call it a night. What the hell I thought, this woman was kind enough to offer and it'll sure be a new experience for me. I had absolutely no idea what to expect, so I went into this with mild apprehension. I was given sheet music to songs I'd never heard before, sheet music with what might as well been written in Sanskrit for all I know about music.
We gathered at the Auburn Mall, my friend Jen, Kendra, her sister, husband and close friends. After quick hello's we got on stage and started to sing. These folks were amazing! They sounded so good, and people responded in kind. I was very moved by the warm smiles on the passers by, whether they donated or not. They left a little happier. I was drawn deep into the moment by all the children, and the parents who encouraged them to donate. Right there before us, we saw first hand the indoctrination of kindness. I really had no idea how moving this experience would be. I'm truly appreciative for all the effort that Kendra and her friends put into this, what another great example of how this disease has made my privy to the goodness in people.

RIP Ken Coppola

Ken was one of the first people I connected with when I was diagnosed. He's the tough atlanta city cop I alluded to in the speech I gave about angiosarcoma at this years Umass cancer walk. Ken was a soldier, a detective, a husband, and most important to him, a father. He had reached out to many of us in an effort to ensure that someone would be able to convey his love to his 4 year old son Rocco. This amazingly deep love was not enough to keep him alive, but it certainly stamped him inside of time.... It's burned into me. I can't believe I'm talking about him in the past tense..just like that.

In my life, I've loved couches more

When I was growing up, we had ample space in our house for me to have a conventional room, but I choose to sleep on a makeshift sectional couch in the basement. The basement had an escape hatch which made sleeping on something that would separate such that most of your body was sagging in between sections, totally worth it because I could walk out the back door whenever I heard my dad snoozing in his favorite chair upstairs. The next time that my life and happiness were dependent on a couch was when I worked at the drop zone in Northhampton MA. There was a group of older skydivers that would come out for the weekend and set up shop with their vans, tents, moonshine and other unmentionables. At night, we'd have massive bonfires and from time to time, someone would haul out an old used couch that was ready to make it into the spirit world. Simeralli, the leader of the pack (which was self identified as "the ghetto") , would place the couch on the tinder, sit on the couch, start the fire and see how long he could stay on the blazing saddle. I joined him once, but he outlasted me by minutes! It may be from these fond memories that lead me to the level of excitement regarding my new couch, or maybe I'm just couchophilic. Either way. I'm thrilled to have a real piece of furniture that we bought new. I feel like such a grown up. Hopefully I'll be around to see it old and dilapidated. I'll outlast anyone sitting in that bonfire!

For Angie

You are a fierce Lion, especially when it rains:). Sorry I missed you tonight!

I hate ALS more then cancer

Maybe we make up monsters so that we don't have to face things in reality that are truly horrifying. We don't need Stephen King when we have ALS. I have a friend who leads a parallel life to me, but instead of getting a rare and deadly cancer, he pulled the ALS card out of fates box. We're both rock climbing scientists married to fitness guru's. We both love Mexican food. We sat down the day we met and compared notes and found it eerily strange how much we had in common. Neither of us guessed it would extend this far. I am truly heartbroken that he has to even know what the letters ALS stand for, let alone play them out in his life. When they were at the beginning stages of diagnosing him, his wife, one of my best friends, someone I've been through so much with...much more then should be allowed in one life time, told me that they were praying that the lesions they found on his spine were cancer...at least he would be able to fight it. Seriously folks, we humans need to figure this shit out. We can't live these comfortable lives replete with all the modern day luxuries that spoil us into complacency and do nothing for people who live tortured lives. We have to study hard and figure it out!

fun day in the city

Yesterday, my friend Heather "hessy" treated me to an amazing day in NYC. We've been friends since childhood, went to undergrad together and have been mildly obsessed with pee-wee herman throughout. Last week she texted me times and dates that she found to see our common hero on Broadway. That day was yesterday, Dec. 5th. That day, we saw pee-wee. That day, he saw us as we waited in the frigid December city streets for a glimpse at him as he exited the building. It was pretty silly and too much fun. Thanks Hessy!!!

oh the humanity

My breath is taken away on a daily basis by the kindness and generosity of friends, family and complete strangers. It's a recurrent theme in this blog, but perhaps one of the most important ones for me...the humanity, the compassion, the outreach, the selflessness, the kindness, the desire to help a helpless situation. There is a wide spectrum of human behaviour and this disease has allowed me to see almost exclusively the goodness in everyone I meet.

Thanksgiving

I may be off by a few days, but here goes anyways. I have an amazing life right now and am so very grateful for every second that I'm here to thoroughly savor it. My children are delicious, I soak them up with all my senses and expand as a person exponentially every time they show me how deep the human capacity for love really is. My family is very much at my side, and whether they know it or not, I gather so much strength from them. I'm still in love with my husband of almost 10 years. We share a bond forged by love and hardship, unbreakable, unwavering. My friends have already shown me that they'll go to the ends of the earth for me and my family. Sometimes that's where I've been, and they've been able to bring me back. I'm sitting in a room surrounded by the clutter of happiness. There are family pictures in manila folders, art work from the girls piled up, a thick candle that's lost almost all it's wax, stuffed animals galore, Rudolf the red nosed reindeer, marathon medals, pine cones from long ago hikes, and an almost deflated yellow balloon from Maddy's 3rd birthday. Somehow these things never found the perfect place, somehow they describe the lives of a happy family in the midst of a storm. I am thankful for this shelter, this respite, this moment.

I am a fighter

I will use everything in my arsenal to win this war. My heart, my strong will, my intellect, my ability to use other peoples intellect (way more impressive!), my love, my tenacity, my gumption, my new found cooking abilities, my friends, my family, total strangers, pubmed and curcumin. Good thing I like to fight. Better that I like to win!

Angio Sarcoma Awareness

A couple months ago, I was recovering from surgery, waiting endlessly for other people's chemo infusions to finish so that I could take my turn in the Dana I infusion cattle barn, riding a roller coaster made in the imagination of a sadistic misanthrope, trying to graduate, trying to keep my smile for my children, and desperately looking for anyone else on this planet that knew anything about this wretched disease. My how things have changed. Our initiative, to fund research and find answers, has taken off and has spread almost as fast as a juicy rumor in the halls of any typical american high school. I can't believe that a couple months ago, Lauren and I said, "let's get it done", and now it's actually happenings. It's a life's dream, conceived and realized in the blink of an eye. Will any of this change the course of my disease? Don't know. Will it change someone's life down the road? I believe wholeheartedly that it will. When the collective scientific community tells you that your prognosis is, and I quote, "dismal", it feel s pretty damned good to say, not for long!

those red ruby slippers

In the mid morning, when the sun is just high enough in the sky to peak inside our van windows, magic happens. The grey carpet and leather seats sparkle with thousands of reflections from the ruby red slippers which are the choice shoes for both girls. "I want them to shine mommy" is disappointingly uttered from the back seat every time I take a turn that brings my babies feet out of the light. In the rear view mirror, I can see them both looking down at their shoes, waiting, wondering why it happens so fleetingly, almost with no pattern. "you just have to be patient sweeties, they'll shine again".

when a friend is hurting

This beast is attacking my friend right now and I feel so freaking helpless. How could we send people to the moon, erect cities of skyscrapers, dive down to the depths of the sea, develop string theory, get up every morning and drive cars that were made by robots, how could we do this and so much more, yet have nothing but broken hearts to give to our friends who are suffering from cancer. How can it be?

what if heaven is now

And people completely missed it because they were watching TV, thinking about how people are thinking about them, living in the past or future, bored. I say rally around now, right now...it certainly can't hurt.

writing a paper

Oh blog, how I've missed you so. For the past couple weeks I've been focused on writing a paper that spans a couple years of my research. When I mention to people that I'm writing, I think they get the vague notion that I sit down and put words on a page. What actually happens is I sit down and search through endless terribly named folders looking for some piece of data that might just make a good figure, but I won't know for sure until I see it, which I eventually will and then decide that it was an exercise in futility. On the rare occasions that I seek out and find something worthy of a figure, I then spend a day changing the fonts, thickness of the axes, colors of the lines, angle of the view, sizes of the letter. It's been so long since I've visited some of this stuff that I'll find complete figures, long forgotten, made from experimental data that took me weeks to gather, bam, there it is, like magic. Now all I need is to open up some folder that's titled "future" and find pictures of me with my grandchildren.

dead sprint to my babies

It takes less then one second for me to go from sweet dreams to a dead sprint when I hear Maddy cry out in the middle of the night. She falls out of bed from time to time, and I'll rush in to see her on the floor, totally confused as to where she is, why she hurts and what's going on. I sweep her up in my arms, cradle her, give her kisses and send her back to sleep. Guess what..I love my girls!

sisters

Charly is learning to read and we've been working on sight word flash cards. Tonight Maddy held up the cards and Charly read them. Any time I see my babies bonding, it brings me so much joy. They'll need each other in this world. They'll need to hold up much more then flash cards..it's a good start.

driving through the debris of someones life

On our way back from Long Island yesterday, everyone fell asleep in the car leaving me to drift off into my own thoughts for the last hour or so of the trip. Just as we were about to exit the mass pike, there was a traffic backup. I could see the blue lights reflecting off the semi in front of us, so I knew we weren't far from the accident. As we inched our way along, I imagined all the scenarios that could have caused the delay. It was exceedingly windy and there was more then one time when I tapered back on my own speed for fear of drifting all over the road. We rolled up to the scene and there it was, a mid-sized sedan, flipped over on the hood. A man stood next to the mangled vehicle with an industrial sized broom raking the glass out of our way. I can't imagine anyone walked away from that wreck uninjured. As we drove past the scene, the papers and books that were once packed in this persons life were now in a disorganized mess all over the highway. Loose papers were caught in the eddies of the fast moving cars, cars trying to make up in speed for the time they lost rubber necking someone elses disaster. There were text books ripped apart, all kinds of personal effects strewn about. We literally drove through the debris of their life. All I could think about was the phone call that had to be made to some poor family member. We just never know what lies ahead, what paths we'll cross, when we'll be lucky and when we'll be the subject of phone calls that rip people right out of time and stamp them forever in one startling unmovable frame.

generosity

I am blown away on almost a daily basis by peoples generosity. It's humbling and also speaks to the gravity of this situation. Cancer sucks..big time. I simply can't believe that it's powerful enough to rip families apart, to leave bottomless pits at the center of their hearts, to steal away time from even one unfinished life. I really f'cking hate cancer. We have to stop it, we have to try. People seem to get that and are supporting us in ways I could have never imagined before. It's not just the outright donations, but the wholehearted expressions of support that make this whole mess a little more tolerable. I'd like to give a giant thank you to all of you.

Miss Maddy is still little

9th percentile height. She's a little itty bitty girl with a smile, laugh and heart so big that there are no charts to guide us for comparisons. I don't know that I've met a three year old with more personality and a more developed sense of humor then this child. She was cracking jokes at the dinner table before she could talk. I'm the luckiest mother in the world to have these kids. I'm the luckiest person I know in general.
Kinda makes me laugh when people walk away from an interaction with me thinking almost audibly how happy they are to not be me. Well folks, I wouldn't switch lives with anyone. I was getting my car fixed the other day and the man whose job it is to sit in a folding chair in front of a window and wait for cars to roll up in order to perform his full service duties started to make small talk with me while I was waiting. He told me about his family and how they all die young because of alcoholism, how he's single and childless, how he sits in a folding chair for his career. That man was counting his blessings when I left, he was so grateful for his life, for the fact that he would live long enough to die from the bottle, that he would be around for at least a couple more years to make a good and deep impression on that chair. He left thanking god that he wasn't me. I guess we have that in common. I don't in any way want to disparage him or anyone else based on the merits of their job, or lack thereof. I'm just using him as an example of why we shouldn't pity people, those people just might pity you too.

at home with an angel

Charly has walking pneumonia. I feel like mother of the year dragging her down to DC and back over the weekend to watch Ted run the Marine Corps Marathon (he did kick ass in it though and came in the top 1% with a sub 3hr!!!). Oh well, now I get to work from home while she snuggles next to me. Is it wrong to be secretly happy that she has to stay home? As she falls asleep under the same covers as me, I can feel her rubbing her little feet together just as I did as a child.

Clean scans close call

Last week I had my CT scans. In walks the doctor with a mixed expression on his face. "The scans look good, except......." oh wait, was I supposed to listen after that? All I wanted to hear was "look good". I did not want any except, any but, any thing else. "except we'd like to take a look at this spot on your liver". Eh? Spot? Like the kind my dog leaves everywhere? He showed me said spot in the current CT and the report from back in August when it was originally found, the note that said, "Spot should be looked at by MRI"..in August..it's October. I wasn't terribly happy with this, and Ted was pretty convinced that the ball was dropped because the doctor was going on vacation the next day and decided it could wait. My spot in my liver could wait. Well, I guess it could. A couple gruelling days later, I had the MRI and the results say right there, no evidence of metastasis. The MRI saw my spot just fine too, the tube however has designated it "nothing of concern". I always thought liver spots were something I'd get on my arms when I was much older...

The tooth fairy

Charly lost her 4th tooth today and has been filled with fantasies about the tooth fairy coming ALL DAY LONG. We all went out to western mass and took a fabulous hike at the notch. There we were, enjoying the great outdoors with fall in all it's dying glory... the family, the puppy and the tooth fairy fantasies. When we got home, the girls fell right to sleep, and by that I mean only two yells up the stairs for Maddy to get into bed, with no actual visits from us to enforce the rule. I wrote little love letters on two one dollar bills from the tooth fairy to Charly and slipped them under her pillow. I'm filled with excitement for her morning discovery, her dreams and fantasies are going to come true, I can guarantee it at least this time in her life:)

Spock

When my hair started growing back and I had even the most scraggly strands to call my own, I was so happy..that was until my husband told me I looked like a baby duck. Well folks, it hasn't grown in length that much, but it is filling in nicely, so once again, I found myself vainly excited about my new hair until Ted told me I look just like Spock. Ahh, to be married almost 10 years and share that level of honesty. Oh well, he's the one who has to kiss Leonard Nimoy, not me:)

oh yeah, I have a job

So here I am, Merrily going about my awareness campaign when the fact that I need to get focused back on my real job came to me as a power point slide print out left on my desk from a lab at Harvard that is doing very similar work to me and is about to publish. Apparently the world of science doesn't really care that I was stalled for a bit due to unforeseen circumstances. No problem I think, but I just spent the last 2 hours on 1.5 paragraphs. All I can say is thank god I made figures before my body made tumors. I'll blog more once I have this monkey off my back. Oh yeah, my dog WILL NOT stop peeing on the only carpet we have left in the house, we've lost all the other carpets to urine attrition already. That puppy is very lucky she's cute and melts my heart.

big birthday little girl

We were busy, we were burnt out, we were working too hard on to many things and decided to ease our way past Maddy's 3rd birthday with a quick trip to chuckee cheezits, a little left over birthday cake and the presents that the grandparents sent up. The only problem with this plan was that I couldn't let her turn 3 or any other age without an actual celebration. She's alive, she was born, so the world should celebrate! I probably would have let it slide if it wasn't for the suggestion from my friend Suzzett that her son's dance troop come for entertainment. I've never been to a party were there was actual talent for entertainment, so I jumped at the opportunity. They were amazing, and I was pretty f'cking happy to see these kids so talented making all of us smile in such a unique way. I think Maddy was pretty happy with it too, at one point she started complaining because I was shielding her with my picture taking arm from being able to see the show. Charly is convinced that she'll be part of the troop in a couple years..we'll see little girl, keep dancing and maybe:)
It was a big party with lots of good friends, lots of good people who are all in my babies world. I'm so grateful for every single one of them, for the effort that people are going through to make sure a little girl smiles..Maddy too:)
I also need to state to the world that Sapna makes the best food in the world. So there it is world, challenge is there, can YOU do better?

Charly and the fire house

It was Charly's very first field trip ever in "real" school. A trip to the firehouse replete with a visit from Puddles the dog. I had been hearing about the fire house rules, and in particular, how we're NOT to pull Puddle's tail for a couple of days now as Charly became more and more excited about this trip. One of the reasons for her enthusiasm was that mommy got to go as a chaperon. Yesterday, I went to fill out a CORI form so the state, which allows me to drop off and pick up my child from the school, which allowed me to go into the school for orientation, which certainly accepts my checks for any school related activity, could ensure that I am NOT a level 3 sex offender. I was told to do this prior to the field trip, so in I went, the day before having no idea that it took 8 days for the state to sanction me a non-perv. I was told that I couldn't go on the trip. The Secretary and admin sat there telling the skinny bald woman who was in tears that she couldn't go. I was devastated. I knew how important this was to my little girl, almost as important as it was to me. These ARE the milestones, these are the memories I so want to have in my children's heart. Such a small thing to most, a trip to the fire house represents the entire reason for my being right now and I couldn't go.
5 Minutes after I left the office yesterday, Charly's principal called me on my cell phone. Apparently the superintendent overheard the conversation I had with his underlings and thought it was ridiculous to not allow me to participate, so he squared it away. Good people:)
This morning, I donned my wig, put on a light jacket, proudly held Charly's hand and went about the morning like any other "normal" mommy. I will remember ever single glance over the shoulder that Charly sent to me, every one of them said, thank you mommy, every one of them said , I love you.

a warm hand, a crackling fire and some poopy

Tonight, we pulled the futon out in front of the fireplace. Ted's laying next to me as I finish up some work on the computer, his hand is gentley rubbing my back as his mind grazes over the Plains history book de jour. Then there's that fire, it cracks, pops and breaths. It consumes the air and leaves as warm gifts these delightful sounds in which the simple act of enjoyment must be wired into our DNA. Just as I let myself wander into my most fanciful fire induced memories, Maddy comes pitter pattering down the stairs eager to go poopy on the potty. And poopy she went. Now off to sleep with her, and back to the fire I go. Night night.

smiles from a new old friend

I have eluded in the past about the nature of the relationships that I've been lucky enough to be part of recently...another silver lining. We all want the pain to go away, the hope to grow, the tumors to shrink. I'm compelled to try and help each of these families on whatever level I can, to ease their burdon, to offer them a glimpse of hope, to let them know that as long as I can say the words FU angiosarcoma, I will fight for them. Sometimes I break a little and find pieces of myself scattered all over the place. I'll collect up all the shards but might be missing the tiniest shred that ties me back up into a solid woman, impenetrable. Inevitably it'll be lost in some projection of what one of my many friends are suffering through right now. How could I possibly reach into their pain and retrieve it back? Sometimes, though, when I least expect it, I'll see a smile on the face of a new old friend, or get an email that is just dripping in hope. These moments make me realize that humpty never needed his original pieces, just some duck tape and patch work from a group of people all working toward the same goal.

The train

I can feel the train moving past me right now. I can see it in the ripples of my tea, hear the wheels on the track. There's a plane on approach to boston above me right now. A barking dog interrupts the steady flow of white traffic noise from the highway around the bend. We're movers and shakers, aren't we. I'm very content right now to sit here cross legged, knowing that I'm not going anywhere at all except off to a good nights sleep. Hopefully I'll dream about my night of snuggling with my babies and Ted. Hopefully I'll dream about my beautiful life.

Another birthday gift

When this all first went down, I was so happy that I was able to be part of Charly's 5th birthday. That took place 11 days after my radical mastectomy and if it wasn't for the wonderful help from my friend Verrill, who stepped up to the plate with out hesitation, I wouldn't have had the energy to put it together.
Today, Maddy turned three. I've reached my first goal folks. I wasn't sure when this began where I was in the process of beast control, had no clue based on the odds in the literature if I'd make it the long 6 months to today. I wanted so badly to see my baby turn three, and here I am in tears that it happened. It's a little bitter sweet, as I celebrate these milestones in my children's lives, I wonder, is this the last one that I'll be here for? It's a thought I can't shake. A thought very real for someone who doesn't have a monster waiting in the bushes outside to attack, but in the lungs, or the heart, or the spleen, or perhaps the bones. Waiting, sometimes for years, completely silent so as not to stir even one leaf on the branches where they lay in wait just to come out in full force to take you down.
We took the girls to chuckee cheezits and watched as their innocence coalesced with that of all the other children finding their way from one token enriched smile to the next.
On the way home, we all enjoyed the last remnants of the sun. It had long since set and was most likely interested in the bright beginnings of a far off sunrise, but we still enjoyed the left overs nontheless.
I love them enough I think for anything to happen.

all the good science

It's really happening folks, all the good science is going to start. With some seed money, the project is rolling, but we still need to fund it and it's NOT cheap. 150k year one and 180k year 2. We're at 8k so far and I'm thrilled that we raised that in one week! I'm very touched by the generosity of my friends and family. I also wish I had a dollar for every time I hear, oh yeah, I was just about to donate..or maybe a dollar for every time I've been blown off all together regarding this. There are some important people in my life that have decided to ignore this altogether and that's a little depressing. I'm not asking anyone to mortgage their house, just 10 bucks or 500k, either one is fine. From some people, it would be nice just to get a reply, that's really cheap. Regardless, we're moving forward with this and are brainstorming ideas for corporate sponsorship. Anyone with inside leads to corporations who might want to give money to cancer research, feel free to contact me!

Breast cancer...are there any OTHER DISEASES?

Be forewarned, I do have friends who are currently fighting the good fight, some very dear to me and I don't begrudge them any of the resources available to them as a result of all the research that has been put into breast cancer...butttttt, are there any other cancers, diseases, reasons for people to give their money away? I took Rob to Dicks tonight (wearing my partial wig and no hat just to see if he could keep a straight face as we poked the world in the belly and waited for a response)and there were pink ribbons everywhere. Pink ribbons on the shirts, pink ribbons on the water bottles, pink chairs with guess what? Ribbbbbooooonnnnnssss that were PPPPIIIIINNNNNNKKKKKKK. I wonder how many research dollars vs. making of more pink ribboned crap dollars has been spent thus far on the war against the only cancer, breast cancer. Well you know what? Screw you breast cancer, you decided to invaded me on the sneakiest most insidious terms. You decided to masquerade as a benign lump and then, all of a sudden, change the course of life as I know it with nary a cutesy tata slogan or ribbon of any color to lean on for support. I'm not done with my campaign of annoying my friends and shameless self promotion. In fact, I'm going to be in the Boston Herald next...a whole photo essay on how I'm doing this with a hand full of friends, for a hand full of friends. One life shattered is one full universe folks..that's enough for me.

Boo-Hoo...get over it!

I need a little vent, so here it goes. Get over it, move on, live in the moment, do something that might actually change this world, this now, this moment. I'm sick of the boo-hoo, look at what happened to me, so I'm just going to sit here, feel sorry for myself and bring everyone else down. We can all do something RIGHT NOW! If you choose to ignore that fact, if you choose desperation over living, it's just that, a choice. I could care less what that something is that can stir you from the endless cycle of self-absorbed pity, but can you look for it a little more silently and a little less whiny?

why live?

I watched my entire family running with our new puppy at Buffumville lake today. This unfolded in a whirlwind of clumsy puppy paws, unfiltered laughter from both girls, the giggles of a teenage boy and the look of true joy on the face of my husband, a look unfettered by the recent events in our lives. After everything settled down, I spent some time down at the edge of the lake, Maddy took off her pants and splashed around with Vera while I gazed at the surface of the water. There was such a light wind, but it carried with it enough energy to stir the surface of the water such that the sun would only reflect off the tiniest little waves. Today is beautiful, today is worth living over and over again.

More Honey

I just want to thank all of you who have publicly and privately laughed with me about the honey creeper. I also want to say hi to those of you I've never met. HI! It's nice to have you along for the ride:)

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.

It had to be me

Who better to get this insidious disease then a biomedical scientist? I go back and forth between feeling like the luckiest and the most unfortunate S.O.B. to ever get angiosarcoma. I get to pour over all the primary literature and get a feel for what is known and what isn't known. The latter far outweighs the former and the former scares the bejezus out of me. Because this is such a small field, all the top researchers make themselves available to any freakish question I've thrown at them. I've had the opportunity to talk with the heads of sarcoma at Sloan and Harvard, the two top centers for sarcoma research (need to go to MD Anderson next!). I was able to sit down and look at my own tumor with a world renowned Harvard pathologist who has set the bar for angio diagnostics. The scientist in me is giddy like a school girl at the opportunity to synthesize all of the information that they provide, but the woman in me wants to break just like a little girl.

I love them more then the universe

It's true, not even a super nova could shine brighter then my babies. How deep is a mothers love? Endless, immeasurable...we'd have better luck counting the stars.

worth every penny

Being bald is something I've grown quite use to. At first there was the fear of the unknown. Then there was the fear of the known. The slower cadence in the sentences directed toward the poor bald woman, the looks of pity, usually cast from the corners of strangers eyes, the full frontal stares from folks in shock that any woman would willingly go around bald. "Cover that thing up" was so loudly spoken from every one of their eyes. "I could wear a wig if I want to avoid all this nonsense, but what can you do to change the fact that you're ignorant" would usually reverberate in my mind during such exchanges.
Often times I throw on a silly wig or a random hair band as an afterthought before I leave the house. I smile just as often as I did when I had hair, I laugh as frequently, I love as deeply..if not more, so what's really changed? Hair? Really people? It speaks to the girth of our narrow confines when the absence or presence of sinewy keratin redefines a life.
I could never bring myself to wear the "there's nothing wrong with me, every thing's ok here" wig. In the six weeks that I've been bald, that wig has left the boundaries of the guest bedroom 2 times for a total of 20 minutes. It's like wearing a mask..it's just not me.
At the beginning of my adventure through chemoland, I cut my long hair and shipped it to another continent where someone gently wove it into a partial wig. At first, I thought it would be an eternity waiting for my own hair to come back to me. After the first day, it didn't seem to matter. I was having fun with my ridiculous wigs, I was feeling strong sporting my bald head in the midst of a society that doesn't like bald women..even a little bit. When the phone rang and I learned that it was ready and waiting for me at 10 Newbury St, 49 minutes away, I was mildly excited. O.K., one more thing to wear I thought. But then they brought it out and put it on my head. It brushed against my face, it fell over my shoulders, it twirled around my fingers just as it had always done. I guess I don't care about the perception of Corrie, but I do care about the feel of her! Instead of one more little thing to throw on my head, I have one more piece of myself to call home.

hi mommy

Big smiles just for you:)

Kyle and the boogers

When I was training to be a white water raft guide out in Colorado, one of the regiments consisted of a 3 day course taught by local firefighters called swift water rescue training. On the first day of the course, we were taught how to navigate a class 2 or 3 rapid by foot with the help of one, two or more people in order to get to a person who was caught in a foot entrapment. We started with the big group first, 5 of us interlocked arms and moved in a counterclockwise fashion across the rapids. At least two people would always be anchored with their backs against the current which provided support and created an eddy for us to move through. As we gained confidence in this technique, we dropped the number of people in the groups until it was just me and Kyle. So there we stood, arms interlocked, feet shoulder width apart and boogers streaming down his face and dripping onto me. He was 6'3" tall, and I had to maintain eye contact with him the entire time, boogers or not. It was a matter of life or cruel swim down the rapids. There was no wiping of the boogers, he couldn't release his arm long enough for that. There was no escape from them, I just had to go through that portion of my life smeared with mucus. After half an hour, we made it though. I felt like a slugs wet dream, covered in slime. After this fiasco, my friend Jen could tell that I was not right, she kept asking me what was wrong and I kept trying to tell her, but the thought of it, the very utterance made me want to vomit. After a week, I was able to get it out..it took one breath, and the cliff notes version, but I got it out. I guess life just gives us those inescapable moments, but with enough intestinal fortitude, we can make it to the other side.

5 minutes later

And it's all good.

Know your enemy

Or so Sun Tzu suggested as an effective strategy for winning a war. So on I marched, to the literature, to the doctors, to the organic section at Trader Joe's. What I've found is that there is a stranger in the hall pointing a gun at me with his finger on the trigger. I can memorize the lines on his expresionless face, I can see the details of his cold steel, I can run toward him or away, but he's always going to be there. For now, I've decided to throw organic vegetables at him.
I talked to Christopher Fletcher from Dana today. He's the premier pathologist who sets the standards for diagnosing angiosarcoma. We talked about all things angio, both before and after looking at my biopsy/lumpectomy slides. In 2008, he published a paper that challenged the long standing dogma in the field which suggested that tumors under 5cm had a better prognosis, and that grade was a prognostic factor. Not so he said. He started to become suspicious of that report by Rosen when he was reviewing case after case of low grade angiosarcoma of the breast. They metastazed too. They killed too. When he looked at the mets of those cases, they still looked like low grade angio, in terms of their morphology..they were still well differentiated, didn't have necrosis, didn't have blood lakes, had no multi-layering of endothelial cells, but what they did have was the ability to penetrate into the surrounding tissue and invade like guerilla warfare.
Crap! And here I thought I had some small advantage, that I leaned ever so slightly in favor of that 30% of people who live for 5 years (even though the majority of them have evidence of disease by that point). Not so I learned today. As you might have guessed, there was a pity party on the car ride home, and another one after those little babies fell asleep. I want so badly to help them with their homework, to give them every chance at happiness. I want to walk at least 20 steps behind them in the mall. I want to pretend like I don't exist when they're teenagers...the key word here is pretend.
I knew it was going to be a rough day, even before my friendly visit with the world scholar. I had to decide which time slot I wanted for Charly's parent teacher conference in November and all I could think about was that it'll be time for my next scan by then.
O.K. then, enough of that. I'm fine now...sometimes it reallllly isn't easy. Thank God it usually is.

The Princess Tunnel

Charly and Maddy have big girls bunk beds. Charly is of course on the top bed and Maddy gets to sleep, and I use that term loosely, on the bottom bed which slides under the top bunk. That area under Charly's bed is where an instant fort, or if you have 2 little girls, a princess tunnel can magically appear when the bed is moved out a couple of feet. Last night, Ted, Maddy, Charly and I squeezed into the tunnel, put Hook on the laptop and snuggled like squirrels in a nest. I think we've started a new tradition.

Maddy and the fake boob

I accidently left my prothetic in clear view of Maddy. It was just a matter of time, the temptation was just too great for her. Oooohhh that thing that mommy never lets me play with...you could almost hear her inner evil laugh. It was time to run the errands, and the last part of my primping routine is to don my fake boobie..but it was missing. In it's place were a pair of giant blue eyes and an all knowing smirk. "Madelyn Painter, where is it?" I say in my no shit, I'm not playing around voice. She led me on a wild goose chase through the house. All the while, she knew that it was neatly tucked away in a bag under a pile of crap in the playroom. When I finally discovered her hiding place, she acted as though she had been telling me of it's whereabouts the entire time..duh mom, it's in the bag under the crap..how could you not know that? Never in my wildest dreams did I envision a time when a silicon filled triangle would be the numero uno forbidden fruit in the lives of my children. I guess boobs are just irresistible in any form:)

The gathering

I could have been struck by lightning. I could have won the lottery. Blue ice could have fallen on me from Donald Trumps personal jet. Instead, I got a cancer that strikes 1 in 10 million. A cancer that my very first oncologist refused to consider. A cancer that made him viscerally angry at the uppity pathologist who wrote the word angiosarcoma on that very first pathology report when I was still a child, naive and happy to bounce along toward some undetermined fate....way off in the distance. It seems like a lifetime ago. Time's a funny thing..but I love it regardless of what it lets unfold before me.
One of the first things I did when I was diagnosed was scour the Internet for information about this ridiculous cancer. What I found was a world of hurt, a universe of shitty statistics which dangled time in front of me like a melting scoop of ice cream in the hands of a child on a hot summer day. You just know it's going to end up smeared all over the place, dropped on the concrete and left to melt away before it was fully enjoyed. There was however one thing I found that has profoundly changed my life for the better. The angiosarcoma facebook page set up by Lauren through which I have forged deep relationships with the other members. To say that time is of the essence is an understatement, so we engage each other with no barriers at all, as kindred spirits.
I had the opportunity to meet Alyssa, Lauren and Precious when I went to NYC to meet the real doctors....I almost cried. We met up again in Boston this past week, only this time we added Bethany, Josephine and Wendy. All of us in one place...the worlds largest gathering of angiosarcoma gals. We already knew the outlines of each others lives, but it was incredible to fill in the broad strokes with fine details. We went from 1 in 10 million to 1 in 6. I'm choked up a little thinking about it, I just love them all so much. Can't wait for the next one...

our perfect little lives

Just scrolled through some old photo's..you know from 5 months ago. I wanted to become 2 dimensional, jump into the photo and whisper in our ears...remember this, remember how light your heart is, how routine even the most crazy moments of your lives are, I want to warn them about the wall they're about to run into...then again, it's nice to see such innocence.

The Crux

There comes a point on every route designated "the crux". Thing is, you never know for sure if you've made it through that most difficult part of the climb til it's over. Sometimes you'll struggle through what seems like an impossible move only to find that a more impossible section lay ahead. Only after the route is done can you say for sure where it was, what you did right or wrong to get through it, what you'll do better the next time. I know that I haven't reached it yet, as tough as some of these sections have been, I can see with clarity that the crux lay ahead...I can feel it in every labored breath, in every inexplicable lump, bump and bruise. At least I found a new climbing friend..thanks Mary:)

Angiofamily

Where would I be without my angiofamily? Totally scared, helpless and alone. I'm flooded and overwhelmed by the love and support from my family and friends, but to spend hours on end with my angiofamily, whether it be in person getting "eyes" in NYC, or over email getting down to business regarding research, it's empowering. Everyone has their own unique way of dealing with crisis situations. Sometimes the biggest crises that people have to weather is how to afford the next and best TV that will allow them to anchor themselves in someone else's version of what reality should be. Other times, it's how to still enjoy life while fighting for that next breath as they let the previous one go, never knowing if it's the last. I've been in the presence of courage personified, of smiles cast outward toward strangers projected from the face of a child who refuses to let fear steal away time, to let fear take away the fact that she has a face and it can still shine. What a trip it's been, what a way to go through life, always aware of it's beauty...how lucky am I that they are here with me and I'm here with them right now. Thank you Lauren for allowing me to find you all:) Thank you to my whole angiofamily for your courage, your strength, and your beauty.

the betrayal

It took 2 little H&E stained slides to show me her face. I've known her name for quite some time now, but there was always the chance that it was a case of mistaken identity. I saw how eager she was to project herself into perfectly boring spaces. She's much stronger then I had imagined. Now that I know what she looks like, I see her everywhere. At her core is unabashed chaos, a structureless soul with nowhere to go but out..and fast. You can see, as if time moved in the dimention of the slide, how she races with lightning speed. She strokes her long fingers into new territory, fresh fodder for her unrelenting apatite. Silly us for thinking a simple drug could outsmart her adeptness. She's a bit of a fiend, funny how she's me.

The moment, you know, right now!

Time's a funny thing. You can ignore it completely, in fact we as a society have fueled many industries on just that concept...ahhh how to waste time. You can also embed yourself deep inside of it's complex layers. I've played it both ways in my life, still do, although with a time stamp, it kind of necessitates the latter approach. In my case, as I to delve deep into the moment, It's as though I'm as walking on a razors edge. The moment is thinner then a tight rope. At first, that blade digs deep into the soles of my feet, but I have no choice but to move forward, anywhere from the pain of the last step, even if it promises ever deeper trenches. After a while, I develop calluses right in the middle of my feet. When I can keep my balance, it's not too unbearable, in fact all stress, all worry, the what if's, the tragedies that have yet to befall all melt away into the superficial layers where the past and the future pull me back and rip me forward. It's imperative to stay on that straight line, to not look down lest I fall into the abyss, which I've done before. After awhile, I get pretty good at it and the calluses deepen. They become so thick in fact that I can actually stop walking and take a moment to sit inside of time without having to wander in what's become an aimless yet perfectly straight path. It's in these moments that I realize that in all my efforts, in the B.C. days of my life, I did a pretty good job at burning myself into time and that I can bend it a little so I can bring all things past right along for the ride I'm on right now. It's more then recalling a memory, being reflective. It's a synthesis of everything important to me about life. It absolutely fuels my inner peace and my silliness...which I guess is a redundant statement. Ok, now it's time to watch TV while I surf the net....

when a child needs their mother

When a child cries out for their mother in the middle of the night, it doesn't matter why. A million different things could have found their way from under the bed, the boggy man could have insisted on a visit from the closet, their big bellies could have rumbled them awake. Regardless of the reason, they are awake and they are sad. Only the arms that held them when they were infants searching the universe with a cry for milk can hold them now. Close to our bosom, breast or not, they can feel our hearts beating just for them, they can feel the warmth of our flesh, they can smell our skin, they can nestle into the mommy nook, they can come home. When a mother hears her child cry just for her, she answers the call of millenia.

Testing the boundaries of normal social behaviour

I've laughed more in the past couple days then just about any other time in my life. Well, I take that back, I can remember many many laughing fits...many...but these past couple days with my new wigs has been right up there in the top 10 best and silliest moments of my life. The pink wig and the white lady blabla wig have been part of the collection for a couple weeks now, but there has been some recent additions that are too over the top, too ludicrous to try and describe...although you know me by now, so I'll try my darnedest.
A couple years ago, Ted was a hippy pimp for Halloween. Part of his wonderful ensemble was this giant blondish/greyish scraggly, did I mention huge, wig. I would say it extends a foot in every direction. After putting on dark red lipstick and some gaint earring's, thanks to Gina, I went to work in this wig. Needless to say, there were the looks, the stares, the man running into the wall. It was maybe the hardest I've ever laughed on the inside...and all day long. The next night, Ted put it on and just happened to have the unshaven scraggly beard to match. He could not have looked more like a burn out...cheech would have been proud. As many of you know, Rob has a natural fro and the other day I picked up a matching girl fro wig. So there we were, fro family robinson, out for a night on the town. People were in shock, again with the stares, the awkward side glances and the unabashed gawks. People were much more brazen and vocal...it was after all the mall, at night, which = teeeeeeeeenagers. My favorite moment was when a group of about 10 pre-teen to teen girls saw us come off an escalator. They asked Ted if his fro was real as they giggled away, they then asked me if mine was. I ripped it off my head and said...I can't even remember, but something to the effect of "what do you think?". They screamed in what I think was a combination of horror, fright and silliness. One giant collective scream, unlike I've ever heard before. That scream certainly cleared our meager atmosphere and is now traveling on whatever little particles it can cling to in the time space continuum. I'll never forget the silliness. Ted and Rob were awesome. I, the one one who can keep a straight face no matter what, was a mess all night. I kept having to say things to myself like, "Corrie, you have cancer for Gods sake, stop laughing, life is horrible for you right now!", but nothing could overcome the swells of laughter, the uncontrollable silliness that kept it's presence on my face.

Going to bat II

I totally forgot to mention how a coworker, Kendra, who has gorgeous locks of long, thick, golden (although now red) curls didn't hesitate for one minute to chop it off and make it into a wig for me. That was very touching. I had a similar offer from the long haired guy who flirts with me at our local gas station..I don't know your name dude, but rock on with your selfless self!

Sara Jane

Is the cutest one year old currently on the earth. Just in case any of you were wondering, I though I'd put it out there. I've gone on and on about my own kiddo's, so here's a shout out to Colleen and her gift to humanity. Thanks for reproducing! As I told her when she was trying to conceive, the world needs more people like her to make more people like her. Well done Colleen! I wonder what she'll be doing in 23 years. Hopefully I'll be able to call her up and ask her myself:)

little things

Ted took the family sans Maddy and me to New Hampshire for the day. I can't travel far from civilization these days, so I stayed behind. After work, I picked Maddy up and took her for a walk around Quinsigamond Lake...perfecto! When the rest of the family came home, Charly brought presents in for me and Maddy...soooo sweet. The girls hugged and kissed and loved each other. We went on with our night, got the girls to bed, cleaned up from dinner and all of a sudden it turned into our own time. I came into my bedroom and Charly had tucked the teddy bear she brought me neatly under the covers. That little bear peaking out from the sheets was put there strait from Charly's heart. She knew it would make me smile at some point later when she wouldn't even be around...it did more then that, it did more then I have words for.

cool breeze in the hot summer

All the windows are open and before I have time to enjoy the physical feeling of this break from the hot summer sun, my mind takes me instantly and simultaneously to all the unexpected cool summer breezes of my past. Those mornings on the river in Colorado, so crisp. We would put our wet suits on, climb in to our boats and train all day in the April snow melt of the Rockies. Backpacking trips with Ted in the White mountains, I would always wake up surprised at how chilly it was having sweat so hard the day before while hiking to that perfect spot..sometimes a nook right off the trail...sometimes a bluff overlooking a never seen before valley. The early summer breezes of my childhood when I'd stand on the block at a swim meet waiting for the gun to signal my frigid jump into the pool. Could all these memories be from one life? I feel like I've had many opportunities, many lives, many interpretations of the same phenomenon and they always leave the exact same familiar smile on my ever changing face.

spiders

So I may have vascular tumors growing throughout my body right now, but what really scares me are spiders. I'm more afraid of those eight legged masters of fear then I am of cancer. We used to have spiders all over the exterior of our house. They would wait until night and then creep their way down to lay in ambush near the lighted windows and doors. When you walked in the door, they'd drop on your head. When you'd let the dog in, they'd be in her fur. Every night that I came home after dark I had to face those damn spiders. Sometimes I'd call Ted and have him open the door if he was home first. But then there were those nights...those dreaded nights when I had picked up the kids, gone grocery shopping and come home to an empty house. That meant many many trips through the door at night with bags and kids and other obstacles that made one linger at the door. The spiders. Would drop. On my head. On my shoulders. In the bags. Spiders. I called an exterminator and he sprayed lovely chemicals that made the spiders die. I love that man a little. He doesn't know it, but I would have payed him a million dollars for the relief he gave me. Too bad he can only work his magic on the exterior of houses.

Riding with Robby

Instead of Ted taking his weekly jaunt out to get Robby, I drove out to get him. Partially to have the excuse to listen to some music and have a little time by myself, partially because Maddy's sick and it breaks my heart to hear her call for me knowing that I can't go near her since I'm susceptible to everything and partly because I just love hanging out with the boy. He had no idea that I had just shaved my head and his reaction was priceless. He loves the mini mohawk....I knew he would. I was so upset when I realized that my hair wouldn't last until today, I wanted him to have the first go at it. Oh well, we had fun yesterday all the same.
We took the long way home. Rob put on Dillan and the sky gave us a beautiful setting in which to relax and enjoy the music. I can not overstate how cool I think it is that he lives for the same music I absolutely needed to get through adolescence. Robby and I have always been close, we get each other. On our way home, he was pointing out wisps of fog and clouds that made grey look so alive while I was picking out lyrics that I've had in the back of my mind for well over twenty years, lyrics that make you realize that there are depths to human emotion that have to be extracted and packaged by people like Dillan for people like me and Rob to get the most out of life....and we do!

who needs hair anyways

It's been a long time since humans needed hair. If you really think about it, hair is a pretty silly thing to have on your head. How much money do you spend every year on cuts, dyes, brushes, shampoos, rinses, clips, gels...you name it and they'll sell it to you. In the end, the majority of people are insecure about their hair...hence all the money to try and get it to look good. All the same, I wasn't very excited to come home tonight and get shorn with the same clippers that used to keep our dog from getting dreads. Ted offered to buy brand new special corrie clippers, but I declined. I decided that this was just another step down dignity lane and it was fitting to be shaved with dog clippers. When we got home, Ted took a long hot shower. Maybe he was delaying the inevitable task at hand, maybe he was lost in a steamy day dream without balding cancer people. When I heard the running water stop, I knew it was time to say goodby to my hair and hello to my scalp. Ted emerged from the bathroom, clippers in hand and totally bald. I burst into tears, it was so unexpected and sweet. I was very moved by his act of solidarity, it made the moment light...not at all unbearable. So there we stood, me and Ted and the girls with grandma taking pictures of shave fest 2010. I had him leave a mini mohawk just for fun. I don't mind it so much. As I've found throughout this whole experience, each of my dreaded events, whether it's been surgery, chemo, hair loss, crappy ass food, is always worse when it lay in the future then in the past. Now I get to have fun with my wiggies...just got a white bob that I can draw on...how fun is that!

Hairs on my pillow

I wonder if I spay my hair with aquanet, would it stay stuck to my scalp for the next eight months or so? Every day, there's more hair on my pillow. It's as though I get up but bits and pieces of me stay in the past, refuse to move on with me. Body parts frozen away at Dana, hair en route to europe, dignity being autoclaved from the scope at umass. It's a challenge to walk in the same shoes that once fit a healthy confident woman in the prime of her life. They still fit, but they carry a balding, mutilated cancer patient. On the bright side, Charly and I have major fun plans for my bald head including but not limited to stickers, washable markers and shaving cream wigs. I had my last "treatment" the day before yesterday and am starting feel what's now becoming the familiar side effects. The tight throat, mild nausea and fatigue. Last week, I was letting all those things that lay in wait at the periphery of my focus take hold, grow deep routes inside of my happiness. I had to let it go and start over, get a whole new world with a brand new sun that has never cast light on the weeds of misfortune. After my treatment, I felt much stronger, I felt, once again, that I had done something, anything to stay here for my loves.

my thoughts on doctors

Lump here, no lump there.
the end

ode to a hemorrhoid

Should we go to the beach? The cabin? hiking? swimming? Nah, let's go to the ER and get that bright red blood spewing forth from an orifice which shall rename nameless checked out. I haven't started the chemo that makes you bleed yet, so this episode was particularly worrisome. When I called Dana and described the situation, the nurses words were," oh jeez, get to an ER now", which made it all the more comforting. So off we went, not sure if this was from chemo side effects, from a metastasis to the GI tract or from something unrelated to cancer (although when you try on my shoes, the snugness of fit is due at least in part to cancer). They ran a couple tests and decided to perform a colonoscopy. joy. with a stay overnight in the hospital for the prep. joy squared. If you've ever had the pleasure of prepping for one of these lovely, integrity stealing
procedures, you've also known the pleasure of MoviPrep. It's a Peg350 wash of the entire GI. Good times with PEG. I'll never look at my crystal drops the same again (we use various PEGs to make proteins crystallize). In the end (pun intended), everything turned out to be fine. The bottom line (again, sorry), was that there was an internal hemorrhoid just waiting for the right time to show it's glory. Thanks alot you A hole!

A girl only needs a couple inches to be happy

I was dreading today, the day I chopped off my hair..all 21 inches of it. The funny thing is, I was growing it so long to donate to locks of love...little did I know that I was being drafted into that unwitting army at the same time was I volunteering for the other side. I decided to make a partial wig for myself since I had so much hair. It's ridiculously expensive, but I know it'll feel like home, or some place familiar when I'm walking alone in baldland. Until I get it, I have my fluorescent pink Cleopatra wig and my "I'm trying to look like I don't have cancer and am really normal like you" wig. It may only stay in my head for another week or so, but the couple inches they so generously left behind are much appreciated. After the carnage was cleared away and Charly had a chance to see me, styled and all, she said "you look even more like mommy". I love that child. Maddy also was fine with it, she just looked up at me and said "they take your hair off mommy?" followed by a big hug. I think she's getting used to "them" taking parts of mommy off. Hopefully we'll get a little reprieve!

cleaning the drain (found this one that I wrote way back and never put up..)

Tomorrow I'm getting it chopped. I think I'll miss my hair more then my boob. Tonight in the shower, my fingers took extra long to run from my scalp to the ends of my hair. There's a distinct sound that long wet hair makes when dropped on your back in the shower, you can feel the weight while hearing the gentle slap. I'll be bald for almost a year and then it'll grow back slowly....I'll never have long hair again. Poor me, poor bald one booby me. I'm actually in a good mood, at peace, pretty calm and feeling good. I think I owe it to Robby tonight, he could NOT be sillier...and just in time.

Thank you Ted

Having cancer is not always silly and fun. Sometimes there are dark moments totally devoid of light, as if a black hole suddenly appeared on an otherwise non-collapsed sun filled day. You can almost see those rays of light being stolen from you and the faster you chase after them, the closer into the abyss you're pulled. I was on my way in, pretty deep last night when Ted reached his hand in and pulled me out. I don't know what surface he was standing on, but it was strong enough to hold us both up. He reminded me that I can do things right now to help my babies, and for me, that's the only thing that matters. I'm on my way back to the silliness. Later today, I'm putting together a photo montage that will be entitled "fun with cancer". There'll be everything from silly wigs, to fake boob contests to sexy bathing suit displays....

my girls are cute

And here we go again, are you guys sick of me talking about how freaking cute they are? Right now maddy is buck naked on the leather chair watching Max and Ruby and Charly is laying on the futon in animated heaven. I am doing everything I can to stick around for those little beauties, but in the end, it's out of hands. I do have control over right now though, and I can fill it so deeply with love that surely it'll overflow into the future and keep them strong no matter what. I touched Maddy's face the other day and she looked up at me with a smile. Such a simple moment that might otherwise go unnoticed in a typical busy life. That's one more smile in the world, one more light hearted moment that wouldn't be here if I had chosen the road more followed. Charly's neck screamed out to me to be tickled and I was here to do the job. I could feel her laughter through my skin, into my bones until it reached my heart. How could that be a bad thing? How could life be bad right now?

why do I read the literature?

A tumor by any other name would metastasize so frequently? It really is depressing folks, so I don't know why I do it. But like the mangled pieces of metal, that used to be nothing more then a monthly payment, politely moved over to the side of the highway so as to not interrupt other people who still have lives, the literature always temps me to take a peek. When I do, I see bodies thrown from the cars..they most have not been wearing their seat belts. Those cars most have flipped at least 4 or 5 times...surely there are no survivors. These are no ordinary accidents, most people have never seen anything so gruesome, so how could I not look? It's a bit demoralizing, but I'll get over it..time will make sure of that. I'm considering putting a governor on my pubmed access!

oh yeah, that's normal

So there I am, feeling fantastic day one, day two and half of day three out from my first chemo treatment when boom, my throat swelled up, my chest became congested, I started experiencing shooting pains in my chest and down my femurs. I looked at the list of possible side effects and they basically lay them out in that order. I'm feeling much better now, so it was really just 24 hours of feeling like total crap ( I say as I jinx myself into 6 full months of misery). I add the anti-VEGF in my next round. I can't decide if out of all the possible side effects listed, I'm least looking forward to rectal bleeding or vomiting a substance that looks like coffee grounds.......WTF science, why is it taking you so freaking long to figure this sht out? I guess it makes sense when I think of the projects that we work on for 5,6,7 years to get a PhD...the conformation of one protein. One stinking protein at a time is not going to cut it! OK, I have to stop complaining because my family is harassing me to stop communicating with all of you loves and start watching cheesy TV with them. Night night:)

a day at the beach

I've met the most amazing people because of this ridiculous cancer. Some are new to it like me and others have been living their lives for quite a while, the elders (eventhough some are younger then me), the wise ones with some kept secret that will keep us all alive forever. Maybe it's the cod liver oil, maybe it's the vitamin D, maybe they brush their teeth with their left hand in the morning and their right hand at night...maybe. Yesterday my friend B was in town for her monthly chemo treatment and we decided to make a day of it. After her infusion we jumped in the car and headed to the north shore. We walked around Rockport, had lunch high up on a balcony overlooking the moss covered rocks at low tide. We headed down the coast to Singing beach where we felt the warm sand and cold water coalesce over our chemical feet. We took ridiculous pictures of our prosthetic boobs side by side on the floor board of the car. We were both grateful for the warm weather and friendship. Stranger things have brought stranger people together...as for this group, I'll take um:)

ahh the good poison

I feel pretty damn good about my decision to do chemo (I'm writing this to the future Corrie who may develop a different perspective on the matter....remember...happy??). When Ted and I parked the car at Dana, neither one of us were in any hurry to get out. Up until this point, it's been somewhat in the background. Even with the surgeries, I was just a patient in a bed, not a shhhhhhh cancer patient. From the second we opened the car doors, it felt like gravity had married some stronger force which all of a sudden pulled me straight into cancer. It's not a bad thing, it's a reality thing. At the crack of dawn, the cancer patients queue up for their blood work, their consult and then their infusions. I was the only one there with a full head of hair, the new kid on the block. The healthy looking one, the healthy feeling one. Surely I didn't belong, clearly I should leave the seats open for the "real" cancer patients. They all looked at me with such empathy, such understanding. They knew it was just a matter of time until I took my seat right next to them, which I gladly did, and engage in small talk. It's a little different there, small talk has to do with the weather and chemo and life and death all rolled into one heartfelt sentence between strangers.
The infusions weren't bad, the Gemzar burned, but the abraxane was effortless. Next time we add the VEGF monoclonal, Avastin. As we were leaving, I gave into a pity party replete with "I'm so young" confetti streamers and "my babies need me" helium balloons. It didn't last long though and soon all was right with the world....in other words, I spent the day with those angels and their daddy and grandma and brother. I can always bring myself back to the present when I realize that that's were I am. The stronger I am right now, the more I can teach my kids how to be strong in the face of adversity, and more importantly, how to be silly no matter what!

Maddy day

Just as I suspected yesterday, Madelyn was free for the afternoon, and as I anticipated, I absolutely couldn't run my errands without a two year old, so it worked out pretty good for us. Before all the fun, I went out for what's turning into my weekly pilgrimage to Dana, just to check on those cramps, but they're pretty confident that it's nothing cancer related.....most likely an alien or some undiscovered species burrowing into my abdomen. No biggy. I then picked up the cutest 2 year old on the planet who happens to be.... MADDY! We took the car in for an oil change, she helped me pick out a fake boobie, which I like better then the original, we had a fabulous snack of edemame at Osaka and topped off the afternoon with a walk down to McKinstry pond. We ate cherries on the dock and watched the pits slowly disappear into the green algae. Maddy can through a cherry pit far far. The sun was so crisp and the gentle breeze made the moment perfect. She was right there with me, truly there in every way. We walked around to the other side where we could throw rocks into the water. We could have stayed there forever, but a guy rolled up in his truck brandishing a fishing pole. To our great surprise, he caught a bass on his first cast out. He reeled it in nice and slow, took it off the hook and let Maddy touch it. She was thrilled. We stayed for 3 more fishies and then headed home when we saw Ted driving Charly home. Since we had so much fun with last nights treehouse pick nick, we did it again. Perfect:) Now all I need is a foot massage from a Spanish world cup soccer player and I'll call it a day.

Good clean fun

What a great day. I went to drop the kids off at daycare and head in to work for at least a couple hours when Charly looked up at me with those sky blue oracles and asked for special time. Who am I to deny a child, especially one whose little freckles actually spell the words mommy take me with you. Funny, but at the same time as this, it suddenly occured to me that I had all of these pressing errands that needed to be done with a 5 year old. We went to get the car inspected and then went to PETCO. We didn't need anything from the pet store, but Charly wanted to give names to all the animals, so in we went. After about 40 honeys, 23 lullaby princesses and a few Barts thrown in for good measure, we had completed the task. Every little fish, every rat, every turtle is now officially named.
I dropped her back off with her sister, who will most likely be available tomorrow when I need to run errands with a two year old, and went to catch a matinee with Ted. We saw the karate kid and I have to say, well done Jaden and Jackie. Well done. Ted and I held hands through the whole movie like a couple of kids, it was so sweet. I'm incredibly lucky to have his hand to hold through all of this. It's firm and tender and strong enough to pull me up when I fall off the razors edge.
We picked up the girls and grilled a fabulous dinner which we then ate up in the tree house What a treat.
Finally, we walked into town and got ice cream. Charly and our Neighbor's boy who is 8 sat together on a bench far far away from all of us grown ups. They were like a little couple. There were two little old ladies, at least 50 (that ones for you mom), who took so much enjoyment from watching them. They went home with lighter hearts because of that splash of innocence.
What a great day. No no they can't take that away from me.

Apprehensions from a good friend

I think a common misconception that people have about a cancer diagnosis is that there will ensue an overwhelming feeling of fear, an all encompassing grief and total loss of identity. NOT TRUE! Or at least not in this case study. A good friend of mine is embarking on the most exciting time of her life. I love asking her about all of it, to see the smile that she doesn't even know has crept across her face as she dishes out the details. During one of our conversations the other day, she became hesitant when telling me something about her life that was bringing her joy. She then opened her heart to me and let me know how sad it made her to go on about her happy life when I'm going through this. I get that. I understand how she would feel that way, but I hope I convinced her that all I want, more then anything, is to savor the joys of life...friends lives included therein. I told her that I wouldn't trade lives with anyone, eventhough I have huge question marks dripping like sweat from my pores. I love my life. On some bizarre level, I love this challenge. To all of you who are/will or have read anything I've written about this journey, I just want to ask you to take a little time to savor life down to it's marrow. I did this all the time before my diagnosis and it's made all the difference in the world. You can walk on a razors edge with exquisite balance.

I can't spell

Even with spellcheck I'm screwed. This is my one and only global apoology for it. I'm sorry world, I suck at spelling.

eating raw broccoli

My night time snack of sugary cereal has morphed into raw veggies with a smattering of fruit. Just FYI, it's every bit of fun as it sounds! There is just nothing as satisfying as a baby carrot to chase down raw broccoli. Well, the cancer might get me, but I'm going out with one hell of a clean colon! Cheers my friends, and here's to a fun filled life with many low glycemic indexed meals:)

Stop Worrying!

And that's an order!!! For any of you who are sad, worried, upset, concerned or anything other then happy, STOP IT RIGHT NOW! Life is right now, and I'm living it well. That's all that matters eh? Love ya's

YAY

Hessy! My good friend Heather came up for a couple days. We watched the USA USA USA score the 90+ goal to win the class and advance in the world cup. There were maybe ten other people total in the bar, but the collective joy that screamed out of all of us felt like a herd of elephants. We went to the taste of Shrewsbury street where total strangers who have never heard of Corrie, never heard of angiosarcoma, smiled at me and my children as we walked down the street like any other normal people.... people who have not just had their worlds completely rearranged by a creul twist of fate. I love the support, but the awkwardness that people express around me, the "what should I say, how should I act" gig is getting old. It was really nice to be with someone who really knows me, who laughed at cancer with me.

Make believe stories

The girls and I make up stories from scrath and I decided to write them down. When they're old enough I'd love for them to illustrate them so we can publish them as team Painter:) One of the many activities that brings me peace through this whole thing is writing them down, documenting them for future use. I pour my heart and imagination into them and the girls always love them, so I'm hoping to turn them into a forever bond. There are many little things like this that I'm doing to prepare, like a squirrle for the cold lonely winter, for whatever may unfold. It puts a smile on my face to participate in the future while living in the present!

ahh, to envy "normal" cancer

So this beast just won't rear it's ugly head for any of the modern day tests that we humans use to look at "normal" cancer. It's really something to just not know if this is all over me or totally gone. It's even more insane to think that I'll most likely have to wait for my body to tell me where it is with not so subtle hints...that'll be fun. I already have convinced myself that my uterus is cramping up and that the 2cm mass they're calling a fibroid is now a 6 cm tumor causing these cramps. We discussed a biopsy, but I don't see the point considering that 2 institutes took a total of 11 core biopsies of the original tumor and called it benign. I have to make my peace with not knowing and just jump into chemo with a blindfold. Got to get some ear plugs....

Chemo and fake boobs and hair loss oh my

Here are the lovely details concerning my long awaited trek into chemo land. First and formost, let me be clear, there is absolutely no evidence that any of this will do anything (sounds like BP is controlling my fate, eh?). The doctor literally said that this is only a peace of mind thing and that's it. What a great position to be in. Don't do it, get it again, feel like shite for cheating my kids. Do it, feel like shite for 6 months sans hair, booby and mental faculties, get it back, feel so much better because maybe, just maybe I delayed it for a year, or a month or an hour. Well, I'm the type of gal who will put up with this crap for as long as it takes, even if it's for a statistically insignificant amount of time. On the much needed brighter side, if it does come back it's not an immediate death sentence. The doc's at Dana have had quite a bit of success control tumor growth with various chemos. In fact on my first visit, my doc who has been there for over 5 years said all, I repeat ALL of his angiosarcoma patients are still alive (granted there have been less then 130 people in history of man kind who have had this...what ever). Some have had recurrences, but not all, and the ones who have had it come back are still here too. He also said my hair won't fall out for 6 weeks after my first treatment, so whoopee, the news just gets better and better and better, and I just become luckier and Luckier and LUCKIER! It's all good, I get to lay down and relax for 3 hours ever other week.