Monday, February 7, 2011

I'm running out of heroes.

Kirsten died today. She was one of the refractory Hodgers that I looked to and said, "If she can do it, then I can." She was just working out only a couple of months ago and seemed to be her energetic self. She lived in Vancover and couldn't stand the fact that the Olympics were in her town, wreaking havoc on her daily life. She kept telling people to go home. She was very funny.

Kirsten found the Hodge at about the same time I found mine. But she had been through a couple more clinical trials than me in that time. That's basically what killed her. All those treatments, all that poison in your body, it just ruins things in the process of trying to make you better. Her platelets were slammed down by so many treatments that they eventually gave up on her. She went into the hospital and the staff gave her transfusions. By then it was too late. With her platelets so low, the cancer had a chance to really get ahold of her body and it did.

My plan to jump from treatment to treatment is a failure and I know it more and more every day. I now understand what Custer felt like when he took that last dip into the high grasslands of eastern Montana. It's sort of like, "Oh no. What have I done?" Luckily I have more time than Custer. Now, I have heard from some of you that my entries have become more somber. I'm sorry for that. If you don't want to feel that way and I'm making you feel that way, please stop reading this.

My daughter, McKenna, makes bracelets and hair pins out of duck tape. Yes, I spelled it right. Her tape is duck tape and you can find it at Target. It's a cheap rip off of duct tape, the big daddy of any tool chest. The bracelets go for fifty cents and the pins go for one dollar and fifty cents. She is donating all proceeds to cancer research. She'll probably make about six or seven bucks.

McKenna knows. She talks around it every day. It's on her mind and I can tell that she wants to remember us and the moments. I thought she would be the one who can be immune to this. She used to have her own cool, fun world until I came around and ruined it all. I'm really going to miss her when I'm gone. She's the one who is most fascinated with life and because she is, it makes her the most fascinating person in mine.

Her bonehead teacher decided to give the class an assignment to read this story about a kid who's mom died. The kid has this struggle because he is losing memories of his mom as he goes through his life and he is very upset about this. I can't believe that fat slob of a teacher gave my daughter this book to read but he did. He's a fucking moron. Her book report, written in perfect English and exquisite penmanship, talked of her being in a similar situation and I could tell for the first time that my death is on her mind. A rush went through me as I read this book report. What the fuck have I done to my kids?

I'd like to say that McKenna and all my kids can take the place of my hodge heroes. I think they deserve it. I've always admired them. What parent hasn't admired what their kids can do? But it's not quite hero worship. While looking up to them, I'm so damn busy worrying about them at the same time that it just can't qualify. I love my kids. I wish that was enough. One day it won't be enough because I had a stupid plan but it was my only plan and it failed. In the meantime, does anyone want to buy a bracelet?

Sunday, February 6, 2011

Yes, I have enough Flare.

Office Space is one of my favorite movies. When it first came out, I didn't want to see it because it had one of those underground followings where people just worshipped it and talked about it with such love. So I held out for a long time. then one night I was tricked into seeing it. And it has turned me into one of those too cool underground worshippers.

One thing I need you all to know. To me the best scene in the movie is one that's rarely talked about even among us worshippers. It's where the three geeks beat the crap out of the computer equipment with baseball bats while this great wrap song played. All shot in slow motion. Just art. It should be up there with other great comedy scenes like "Can I have ten thousand marbles please?" and "You've met jugdish..."

Any way, the Jennifer Aniston character worked as a waitress and was constantly being reminded by her boss (who looks suspiciously like the brother in Naploean Dynamite and if he is, he's going to win an Oscar someday if not for lifetime achievement. I mean, I'd take him over Ernest Borgnine, who is getting it this year and is a man who ate right by Sherri and I in England one night. It was Sherri's one brush with stardom) that she wasn't wearing any "flare". Basically, there weren't enough buttons on her shirt.

Buttons. What a stupid idea. People who aren't cool pass them to other people who aren't cool in the hopes that someone recognizes them so then they can be cool. Europeans who go to the Olympics love them and sucker Americans into doing it. When Americans come home they wear them for a few days and when they realize that they're not really getting the attention and wow factor they were looking for and got back in the European side of the Olympic Village, they put them in a box somewhere. Europeans still love them after the Olympics but when you really get down to it, most Europeans are geeks. Americans, on the other hand, just think "Oh god, this thing is going to put a hole in my shirt. And it's not that funny." But Europeans wish to be Americans even though they can't. Before we let them, they have to ditch the buttons. They have to stop liking dumb, mindless, souless house music. The men's bathing suit thing has to stop. It's gotten better, but just own it. Own the saggy shorts.

I don't include England or Ireland into this equation, though. Even if President Clinton doesn't think America and England don't have a "special relationship", I believe the rest of the country does. In fact, if there is a bunch of people who we think are cooler than us, it would be the English and Irish.

Any way, back to flare. I have it. This type of flare is bad but not really bad. I've studied Hodge daily and try to learn about my disease so much because that fools me into believing that I'm beating it. But I've never, ever run across flare until my doctor told me. Now this is the second time that I mentioned something in passing to my nurse and within five minutes, the nurse was studious enough to pass it on and the doctor was immediately available and nailed my malady without even examining me. People weekly ask me about New York and wonder if I'm ever going to come back to Chicago to get treatment. And I have to tell you that I just won't. I can't when there are people like that out there. It's more money. I know. I'm taking that from my family. But I'm giving them back me in exchange.

One day last week I woke up feeling terrible. More terrible. My whole right side of me was sore. Upon further evaluation, my nodes were sore. and they were bigger. I was also nauseous, fatigued, had flu-like symptoms. I thought to myself that it was a relapse. Well, a junior relapse since I actually hadn't been in any kind of remission. But I knew that until this point, the medicine was working. My nodes were going down. And then, as in the past, one day the cancer says, "Screw you. I'm gonna fuck you up." and then we move on to try something else that only sort of works for a while.

Luckily, I guess this is a little different. It's a reaction to the treatment that I'm getting. It can be alleviated through steroids. Ah the lovely prednisone. Many in the healthy world have heard about the joys of oxycontin. And there are many of them. Why, oxycodone, oxycontin's much less powerful little sister, has been a good, dear friend to me. But you don't really know about pred.I don't know how pred works but when I'm on it, I feel more normal than I've felt in a long time. I have energy. I'm aware and not in a medicine cloud. I'm not overly joyous or happy as with the oxy sisters. I'm normal. The only problem is it keeps people from sleeping much. And I'm okay with that. I actually have a ritual when I make it to five in the morning of dropping by McDiddies to get a breakfast burrito or two. The guy there knows me and is very real and nice. It's actually a pleasant experience watching the sun come up in the McDiddy parking lot and then a few minutes later, seeing Rte. 59 fill up with woozy motorists hurrying to their jobs.

My worry tonight is my nodes haven't gone back down much. Two nodes in my neck which were small before the flare have actually hooked up with the big blob in my neck. that's never a good sign. they say the tumors should return to the previous level but to me, once the nodes hook up, things are different.

The bigger worry is this is a medicine that is supposed to work and it isn't now with the flare. I should have killed off more bad boys by now. Soon, this treatment will stop working. The kill fast but not long is the way this medicine does it. And when it does, there's only one medicine that is a sure thing to me now. One bullet left.

So that's all I have for you. It's almost two now so I think I'm going to try to sleep for a few hours. The other day someone said, "We shouldn't jump to conclusions about that." And then I said, "We could if we had a Jump to Conclusions mat and game." Nobody got it. They moved on. Someday, film students will watch Office Space and the teacher will talk about it and because the teacher has never worked in an office environment and the students obviously haven't, they won't truly get how the Two Bobs were spot on. But then almost all of the film students will fail at making a movie (because almost all of them do) and they'll take an office job. Then it will come back to them. They'll join the rest of us annoying few underground warriors who laugh when the boss says, "Yeah, hey listen. I'm going to need you to come into work on Saturday..." And right after that it will come to them. The reason Office Space is so brilliant is that it points out to us that no matter how cool we are in the world, we are actually just a bunch of C students trying to pretend we're A students. The Two Bobs are out there using all kinds of fancy language in meetings that don't really have to happen. But then they go home, they kiss their wife and they're normal. I wish the Two Bobs can do something about my Flare.