Saturday, February 26, 2011

a hug and a kiss

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

Wednesday, February 23, 2011

we have no clue

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

Monday, February 21, 2011

A night on the town

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

Tuesday, February 15, 2011

The Giant Cancer Cure Conspiracy

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

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

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

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

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

Monday, February 14, 2011

Valentines day

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

Tuesday, February 8, 2011

Bethany Richmond

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

Thursday, February 3, 2011

no title

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