Wednesday, November 30, 2011

My kidney is someone's lab experiment.

Cancer is great. Yes, it is. At least tonight it is.

When I was ten, I had only one goal life. I wanted to be the next Walter Payton. Only without the pain killer habit. I went to football practice, ran and hit as hard as I could and then came home to practice again. I'd come inside when it was dark and before I'd go to bed, I'd practice inside. During school I would draw up plays. Teachers would tell my mom that if I would just ignore football for ten minutes, I would possibly be a good student.

Then one day I went to the allergy doctor. The right side of my back was hurting that day as it did about once every month. When it hurt, man it pretty much shut me down. The allergy doctor did what few allergy doctors do, he saved my life. He told my mom that I should get an X-ray. I complained and whined. But then I got another X-ray and then a CT scan. All of them showed that I had a blockage going from my kidney to my bladder. A month later, I went into surgery at Loyola Hospital in Maywood. When I came to, my mother said that the doctor had to take out my kidney because it was a shrivelled-up ball of nothing. And she said that because of it, I could never play football or any contact sport again. While I was crying, my mother told me that I should use this as a sign. Instead of making it a tragedy, she said that I should turn it around and make this event meaningful. It took a couple years but eventually I realized that I liked being creative. I never would have found writing and creativity without getting my kidney out.

Tonight, I walked into Maddie's room. She was startled, dazed and confused and now awake and without her binky. Where was it? She was crazy upset. She couldn't find her binky. We looked around for about a minute. And then I found it on the ground under her bed. I gave it to her and she put it into her mouth, grabed her blinket and went right to bed. It was only us two. It was a rare, innocent moment. And I loved it as much as any moment in my life. A healthier me would have been worrying about work, if I would have ever bothered to get out of bed in the first place. But this was not the case tonight. The cancer is here. It is still bad. But tonight it is great. It has yet to make me stop. But it has been successful in making me slow down.

Friday, November 18, 2011

Just a silly little thing.

A friend of mine, Amy Markley, and I are huge documentary fans. One day we figured out that people who love documentaries would rather watch something really boring than watch a really exciting fiction movie. Literally, that same night I got hooked into a doc about Tom Petty. Sherri came downstairs and said, "What in the world are you watching? You don't even like Tom Petty." As usual, she was right. Wives are always right even when they're wrong.

Recently I saw a doc that was very interesting, much more interesting than Tom Petty. By the way, I challenge anyone to name a relatively well-played Tom Petty song that isn't about transportation. Free Falling. Running Down the Road. Break Down. See? I am digressing here.

Back to the doc. It was good. You can still watch it on HBO. I'm not sure about Netflix, mainly because it seems like the only movies on Netflix are eighties karate or coming-of-age movies. Or both.

Bac to the doc. I don't know what it's called. But it was about this law in Oregon that allows for assisted suicides. First the movie followed the political part of the issue, basically the passing of the bill through a special election. Really. More people in Oregon believe you should be able to kill yourself.

That was sort of boring, like an interview with Tom Petty. The other part of the story, however, followed this woman who had liver cancer. She was smart, funny, caring, creative. Sort of like my wife, except the caring part. Um, just kidding. I kid.

It seems like liver cancer is an unbelieveable bear. Despite her best effort, she was struggling and in a heck of a lot of pain. Finally, she decided she needed an assisted suicide. The pain was unbearable. And believe it or not, planning for death seemed easier and cleaner for her. Her belly really protruded from her body. She was taking a bunch of morphine. Yes, morphine. Not even an oxy. She was doing a lot of hard stuff. She was ready.

But then something weird happened. She started feeling better. She had already scheduled her suicide and it was only a few days away. So, she rescheduled. Now, I'm the father of a daughter who takes dance classes. And you can't ever, ever, ever take a day off. They are the dance Nazis. And I'd like to point out that if a lady in Oregon can reshedule her suicide, why can't my daughter rescheduke a dance class every now and then?

Back to the doc. So the lady was feeling better. And one day she said, "Ya know, I realize this is gong to sound naive, but I wonder if I'll ever have to schedule that suicide ever again. Maybe it won't come back." The production crew followed the lady for a month or two and, well, as you can guess, the cancer came back. A couple more months passed and she was worse than before. Eventually she was bed-ridden and went through with that suicide.

It was both fascinating and sad to see the lady and her husband go through with this suicide. I'd love to watch it again, but I know it would be too difficult to get through. Even through the story had many memorable moments, that statement when she was seemingly getting better about how she didn't see the cancer coming back really got to me. I'm obsessed with not seeming like that. I just don't want to look foolish when the prognosis isn't so good.

But still, I guess I have to look foolish today. I just got back from the doc and from receiving my sgn treatment. I've already passed the average patient's experience with this drug. I believe that the majority of patients come off the drug by around the fifth month. Some come off the drug because the cancer comes back. Others, a good many others, come off the drug because the side effects become too debilitating.

Way back in August, I had scans done and they showed that I was almost in a complete remission. Just a few spots here and there. That was an amazing feat, by the way. I mean, I had it all over my body and in really large boulder sizes.

My doctor, who once couldn't make one of my appointments because he was testifying to Congress about it, is just amazed. Each time I come in, my blood counts get better. I'm almost to a normal level. He said he doesn't want to scan me again for a couple months unless my bloodwork turns bad. I guess I don't need it.

Here's where I look naive. The doctor and the statistics both say that the prignosis for the next year or two or three is good. The deal is, I gotta make it one full year. If I can do that, the stats are, as Conner would say, really Boss! If I get a complete remission, I could stay that way for the next two years. It's not overwhelmingly the case but a good portion of patients have no problems for that amount of time and even later. The drug is too new to know how much later that is. Some people are still going.

Now the chances are about the same that the cancer will come back. Could be fifty-fifty. I'm not sure. But even if it does, often the cancer is more manageable. Of course, tomorrow I could relapse and the cancer would not be so nice. In fact, it usually acts like it's really pissed. Like your son took the car to a crack house in the city, got into an accident and had his hooker call you to tell you. That pissed.

I've heard and seen great news like this before. I told the doctor that the pattern has always been the cancer goes away and then within a month it comes raging back. But today and the next many days after, I am going to choose to be naive.

Like Tom Petty's career, this story doesn't end just yet. It's going to be tough to get to one year. The side effects are doing a number on me. I suffer from a lot of fatigue and a heck of a lot of something I mentioned before, nuerapathy. My hands and feet give me a hurtun real bad. Even though I spent the last two months getting off of all kinds of drugs, I can't function without pain killers and neurapathy pills. When I'm on them, the pain doesn't go away. It just gets a little tamed. I also often have a hard functioning. Walking can be hard.

I'm getting tired. I'm going to go. I hope this makes sense. Before sgn, I just wanted to make it to Christmas. Now, my goal is much more ambitious and at the same time, more naive. I'd love to see Conner graduate high school. I don't think my body will take the shock of the cost of college. So I'll just keep to graduation. That is my silly goal.