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.