Phew. That was close.

If I haven't gotten back to you over the last week or so, I am very sorry. I went on lock down again. Lock down for me has nothing to do with prisons. It's when I get really sick. This time, my shingles came back and I got a cold at the same time. I'm still not exceptionally well but am working on it. At least I think it's a cold. When talking to Dr. O'Connor today, he suddenly became quiet and serious. He told me it's either a respiratory infection or my nodes around my lungs. If it's the nodes around my lungs, well, Sherri might want to start looking for another life mate as I'll be cooked for sure. But I doubt it. I'm coughing up plenty of phlegm and it's not the usual blood brown that accompanies bad cancer phlegm. I think the good doctor is just being cautious. So any way, even being a cold, I was pretty sick. The shingles really knocks me good. I'll get better in the next couple of days. That means Shamus, Pat, Rossi and Kevin Kucharski should be expecting some bothersome contact from me. Also, to Todd's step daughter, thanks for the note. It seems as if Todd hasn't changed much. Which is a good thing. 

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. 

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

How I feel

This used to be a fun house.

But now it's full of evil clowns.

The joys of Shingles

I have Shingles. They say they're painful but to be frank, I really can't tell. My body is already killing me from the chemo and cancer. I've had shooting pains and cramps throughout my body for two years, I really don't believe shingles is going to be that god-awful. 

So instead of looking it this as another setback, I see this as another chance to enjoy some vicodin. It's not every day that you get to bedazzle your brain with some powerful-bad drugs that don't make you puke. In fact, I wrote a poem about it. It goes something like this:

Oh vicadin, you put me in a lovely trance.

Just a small swallow 

And I will wallow

With this sweet, sweet drug romance.

Mutts, my grandmother and Cancun

My dog is a mutt. By looking at her you'll notice that she has some Labrador Retriever in her and some German Shepard. But with the way she acts, you'd think she even has a little greyhound. She loves to run around. Send her outside and she'll run in in a long loop that covers the back yard for many many minutes and until she gets pooped.  She's very fast, too. 

I'll never forget the last time I chased her. It was in September. I was still recovering from my stem cell transplant but I had enough energy to run a few laps with her. That day I don't think I had much cancer in me. But that was the last day. It was beautiful running with her. I had spent a year in Houston getting a new blood system and was finally free on a cloudless and warm September day. Before that year, I had chemo treatments that lasted eight months followed by the worst type of relapse filled with itching and chest pains. Two years of treatment and pain all out of me in the backyard as I ran like a maniac after a stupid dog. 

I felt wonderful. That was a long time ago. This is the third year that I'm fighting for my life. Every day I wake up and prepare myself for the aches, the cramps, the nausea, the vomitting, the headaches, the shooting pains, the obstructed bowels, the blood in my nose and lungs and the fatigue. God, I am so, so tired. I can't climb a flight of stairs now without being so very tired. There's nothing wrong with me. There is no medical term for a body that's just pooped.

There is a drug out there that can help me. I can get relief for about five months before the cancer comes back or the really nasty side effects begin. But that was my back-up. To use the military analogy, this drug is my reserve troops. When it looks bad, then I always have that drug. You don't want to use this back up because it's so powerful that when the cancer comes back, and it always does, it really comes back balls out. And then you options to fight it. 

Originally, Dr. O'Connor set me out on this path of waiting to use these reserve troops. Let's not use SGN right away. Let's use some other drugs to soften the cancer first and see how long we can go before we have to use it. Heck, we could go years without even considering it.

Dr. O'Connor changed his mind last week. He said I really need a couple of wins. I have a 5 cm mass in my chest now. That along with more than seven cancerous lymph nodes across my collarbones and upper chest. I have a lot of cancer in me. 

About ten years ago, I went to see my Grandmother with a baby Conner in tow. This was her first Great Grandchild and all during the pregnancy, she begged me to come by with him as soon as I could so she could see her Great Grandchild before she died. She had ovarian cancer. But when I saw her it wasn't what I expected. She was very sick. So sick that she really couldn't care about Conner. This isn't a criticism of her at all. I understand it. I have a beautiful baby girl. But I can't enjoy her. I am sick and it has consumed me. I think of little else because I can do little else. I have become a benchwarmer in my life. I watch what goes on now from the sidelines. I sit and watch. Most of the time I don't even speak. That would be a pain because I'd have to breath and smile or something. Way, way too hard. I know how my grandmother felt. You just get so darn tired.

Last night I dreamt that I picked up my friend Scott Corirossi at the airport in Cancun. I had a house there. And I was telling him how great it was to be living there. I don't understand why because Cancun would really annoy me in real life. Rossi acted like I wasn't there. That happens now in most of my dreams. People are acting like I'm not there. 

She said it better

http://www.youtube.com/watch?v=gePQuE-7s8c