Tuesday, October 26, 2010

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...

Sunday, October 24, 2010

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:)


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:)

Saturday, October 23, 2010

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.

Saturday, October 16, 2010

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?

Thursday, October 14, 2010

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.

Wednesday, October 13, 2010

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.

Monday, October 11, 2010

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.

Sunday, October 10, 2010

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.

Thursday, October 7, 2010

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.

Wednesday, October 6, 2010

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!

Monday, October 4, 2010

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.

Sunday, October 3, 2010

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?

Saturday, October 2, 2010

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.

Friday, October 1, 2010

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:)