Saturday, April 23, 2005

The view from the bleachers...

Bri plays lacrosse at Lemoyne, and even though it was cold and rainy, I didn't want to miss another home game. I've already missed in the rain a few weeks ago, and one two weeks ago on a truly beautiful Saturday. Unfortunately, that beautiful day was only three days after a treatment, and my blood pressure was too low and unpredicatable. I could barely get out of bed. So I decided to brave the run, planning to show up for the second half and the tailgate after.

The first quarter ran very long, and I got there in the middle of the 2nd quarter. It was great to see everyone, and at first I didn't really notice the cold. No rain, but it got colder the longer I watched. There's some cold-holding penetrating chill factor built into aluminum bleachers, I swear. So at the end of the game, after I brought in the brownies for the tailgate, when Bri said he had to go I was more than willing to sit in my warm truck and drive him up to his dorm.

Its so odd how many of the kids seem to know me after only meeting me once or twice--they're not even West Genny kids, but others I've met during the odd dinner or lunch with Bri. Bri's roommate Brad gave me a hug, and Chris Moore and I had this complete conversation on the merits of owning technical rainwear in CNY. They are a very bonded group, and I hope that Bri has found a comfortable place with all of them. I want Bri to enjoy Lemoyne, to settle into it and take as much out of it as A. has taken out of Springfield. I want him to succeed, I want for him all the best things. And I show up and sit on those aluminum chill rails masquerading as bleachers, even when he doesn't play, so that he'll know that someone is always there--always thinking good for him, always supporting him. I want him to understand that, and sometimes when we're alone like on the truck ride up to his dorm, I know that he gets all those good thoughts, and feels me holding them for him. My biggest fear is knowing that I won't be here for him for as long as he's going to need someone in his corner.

But I hope that he understands that I'm always watching him, even when I'm not in those bleachers.

Thursday, April 21, 2005

my brain in black and white

It's time I started to write this all down, what's happening to me, what's happening in my head. If I don't start putting things in writing, no one will ever see all the thoughts that have been coursing through my head, no one will ever understand.

My to-do list is yards long, and I keep losing track with each new treatment of what's been done, what still needs doing. A few days after a treatment, I try to organize things, but I can't stay focused on one project long enough to finish it. It took me all afternoon to pull my videos and beanie babies and put them boxes for Saturday's garage sale.

The chemo brain is much different with this treatment regimen than it was with the first one. Days 1-5 after a systemic treatment, I can barely think my way out of an open paper bag. Then the lack of focus seems to kick in and out randomly for the next 10 days. Then I'm back to no focus at all. And I'm not sure yet whether the chemo brain effects are worse after FUDR plus irinotecan, or after irinotecan alone.

BTW, you get FUDR and irinotecan for advanced colorectal cancer, specifically metastatized to the liver. I was diagnosed at the end of April, 2004. Prior to this regimen, I took 15 cycles of Avastin/Leucovorin/5-FU--until the doctors at Memorial Sloan Kettering decided that maybe they could chance operating on my liver and primary tumor. David Crosby drank his liver to death, and he got a whole new one. I did all the right things, but a liver transplant is not an option in advanced CRC due to the high levels of recurrence. Saying that 'life is not fair' doesn't even begin to describe this.