Thursday, March 25, 2010

Life as an eighty year old

Anne Sexton once wrote, "In a dream, you are never eighty." Or maybe it was Sean Hannity. Anyway, it's great insight. I would also like to apply it to what people think of me. You may remember me as being a really annoying, self-centered forty-something with graying hair. Healthy but still really annoying. In a way that's wonderful. I would love to be thought of like that. 

But that person is gone. Now, I am just me. Some of it is hard to look at. My hair is almost all gone now. What's left is white and ragged. My face looks worn. You can see what I've been through by looking at my expression. It's hard to smile even when I am happy. And I am still happy. Also, I'm very skinny. I struggle to keep up a weight of about 160 pounds. When I started this fight I was about 185-190, depending on whether I had a donut before weigh-in. 

Sherri thinks that some of our relationships with friends and neighbors have suffered. We both think that it's hard for people to handle. What do you say to me? So, how is cancer? We think some people just generally stay clear. 

Of those many kind-hearted people who have asked to come over or to just meet up, I really appreciate it. But keep in mind it's hard for me to say yes. You remember me as an annoying forty-year old. When you see me now, you will only see me. And, on my end, I can track the adjustment you make in your head when you look at me. Your mind goes from, "Wow he's changed." to "Man, he looks bad." to "Hide the fact that I said he looks bad. I think I'm going to hell for thinking that." Once again, it's okay. Even if you don't make that adjustment, I think you have or you will sometime later on. When you're driving away, you'll say, "Geez, he looks like crap." 

Kids aren't so sophisticated. Mostly I see it in Conner's friends, probably because boys, like men, are even less sophisticated than women-folks. An encounter usually goes like this:
Kid and Conner come up to me. Kid is looking down.
Kid says hi to me.
Kid has weird look on his face as he looks at me.
Kid looks scared. He sees a monster or at least something he's never dealt with before.
Conner sees none of this. 
Conner makes a joke or comment.
Kid gets away in a hurry.
I think to myself, "God bless Conner." Either he's accepted the fact that his dad isn't like other dads--strong, somewhat handsome, not so ashen. Or he doesn't see it. Either way, it is to be admired. Some people say I'm strong. Try being a pre-teen and you have to introduce your friends to your dad, the sunken-eyed, ashen-faced circus freak. 

I blame nobody for avoiding me or making a face or anything. It's only cancer's fault. In fact, I'll even give you some tips on how to act with me. I might be different from other people with cancer so only apply this to me.

First, ask me anything. What does it feel like? Can I touch it? Is your poop still backed up? Anything. Since I'm dealing with it 24/7, I have a lot in me and would love to pour some out. Just like my poop.

Second, it's okay if you say I look like shit. I do. You're just being honest. Although some of you would disagree, I never really cared what I looked like as long as I didn't look too much like a dork. Average was fine with me. Got me through college. So I don't feel bad for looking so bad. What I feel bad about centers around my kids and wife. I don't want them to think they live with a Thing. I don't want Conner to hate me for being sick. Many of us admire our dads. It's hard to admire a guy who lays around in a blanket all day.

Third, understand my body changes on a minute to minute basis. I might feel well and then a node tells me he's still there, alive and well. So I have these tics now. Also, I may get tired and cancel out on something at the last minute. It's weird. I hit these walls. One second I'm fine and then wham, I just want to lay and stare.

Fourth, take it easy on my wife and kids. They live with me. It's my wife's birthday today. Every day I wish I could give her a normal husband. But today I had to settle for candy, a gift card and a phone charger. Romantic, right? She is so very strong. She's still singing every day. I feel it now inside of me. 

Finally, don't worry about keeping my spirits up. If you're reading this, you have become for some unknown reason, a friend. I don't know why you befriended me. But you did. Every day I wish for the days when we were both healthy and talked about nothing. Feel free to talk about nothing with me. Don't worry about how I feel. Sometimes I feel like shit. I won't tell you that because I don't see the point in bumming us both out. I want you to feel good. That way one of us can feel good. 

Friday, March 19, 2010

Coming Up For Air

One of my favorite books from one of my favorite authors is, "Down and Out from Paris to London." It's by George Orwell. He literally gave all his money away to live as a bum in Paris and London to really see what it was like. He had to give his money away because he wanted the experience to be genuine. 

The title of this blog isn't from that book. It's from another book Orwell wrote that was really boring. It was so boring I can't even remember what it was about. Still, he was a terrific writer.

I spent the last two months trying to stay alive. I wasn't very well. I didn't know it then. When you're really sick, you don't know it. Only later can you look back and say, "Whew. That was close." The shingles really had me. Plus the treatment exhausted me.

Yesterday I saw my doc in New York to start another round of treatments. He was shocked when I told him what was going on with me. I said I'd wake up around noon and just tried to get one thing done in a day. He nodded and went on to tell me about men. Most men are babies. They can't take pain like women. But some men aren't. To their detriment. Some men will suffer through pain because they are ashamed and/or want to beat the pain. But they shouldn't do that. Doc told me that there are other treatments out there and if I am still having a hard time doing anything during the day then we can switch treatments. I told him that I was just happy to be alive even if I was running at about one third speed. He said that there is a quality of life issue and patients need to decide individually if living at one third speed is better than trying to live life better. He didn't think I should be like this at this point.

The thought was to give my current treatment three more weeks. If I'm still tired and nauseous then we would switch treatments. We might switch anyway. The lumps in my right collar bone have fused together forming one big mass. So the cancer is growing. However, the big issue is how fast it's growing. If it's a lot then I'm off to another drug.

I'm still in a lot of pain and am nauseous and tired but now I have a whole list of even more drugs to counter act these feelings. It's too early to tell if they're working. You'll know by my radio silence if they aren't. In one day I can very easily down close to thirty pills. Let's take an inventory, shall we:

Colace so I can poop
Valtrex so I can get rid of Shingles
Hydrocodone for pain (two times a day)
Aleve for sore nodes (two times a day)
Ritalin for energy (two times a day)
Kytril for nausea (two times a day)
Ativan for nausea
2 pills of Benedryl for the Hodge Itch
12 pills for treatment
4 pills to fight cancer
An anti-acid to help with digestion