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

The secret to a really good kick.

I have to admit and I think I've said it even on this blog before, but I have an awfully good kick. A "kick" is a cross country term. It describes the last half mile or so of a race, including the sprint to the finish. In fact, I never lost to a runner who was within ten yards of me when I started the kick. 

Now, I'd like to think it was because I was super fast but I really wasn't. I just knew a secret or two. One of the big ones is to never flinch. The first runner to flinch is the one that losses 100% of the time. They let up for even a split second. That's all it takes. The better runner focuses, keeps his head forward and down and believes he's getting there first. All those hollywood finishes in races where a guy dives over the finish line just ahead of the other person? You don't need the theatrics. Just keep your head down.

I am trying not to flinch now. We are setting upon the last part of my treatment schedule. I have four days left. The last two times I was at this point, my body started to break down. This time it's just as bad or worse. I've already puked from the treatment and had to take a break for one day. Another situation like that and I'm liable to get off the trial.

But man it's hard. Counting side effect pills, I think I down about twenty suckers a day. Most of them are horse pills. Not pony pills. Big, Man O War horses. The type my step father bets on. For part of the day I keep my mouth shut hard. If I open it, stuff will surely come out. 

I'm also breaking down the other, less pleasant way again. My butt feels like I spent a lost night at Mardi Gras in New Orleans or Rio. Blood is the liquid of choice here when stuff does come out. 

The good news is I'm not so tired any more. I can spend the day with the kids although I need breaks and am very, very little help with Mad Dog. I am hopeful that I can get these other issues under control somehow. 

Bekah is a brave soul and a fellow hodge dogder who was on the same medicine that I'm now taking and saw a whole 40% reduction of her tumors. She has had to stop the trial because the side effects were too much for her tiny frame and is having a hard time of it now. Please keep her in your thoughts if you can. I will. I believe it's still possible to keep my head down, focus, think of her and never, ever flinch.

Bodily rejection

Things have taken a turn for the worse. Puked a lot tonight after trying to get through the pills. I just can't keep them in me. Either I puke them out or they go out of me pretty quickly the ah, more unpleasant and stinkier route. And I consider myself a pretty good pill taker. Will try again tomorrow. 

Cancer, You-Betcha!

Greetings from Rochester, Minnesota. In just a couple of days I went from New York, the city that never sleeps, to the city that goes to bed around 7:30. Ya-heya. It's cold up here but the folks are warm and the buffets are many. The lead story in tonight's news is about a guy who exposed himself at the Days Inn. Apparently he's done this type of thing before. This is obviously a very disturbed man. Not because he exposes himself. Hey if he's proud of his junk, why not show it off, right? No he's sick because it's cold as hell. Why would any sane person get nakie in this weather even if it is just for a second or two? 

I will be here for the next couple of days. It all depends on what tests I agree to. Tomorrow I meet with some hot-shot doctor. He'll tell me I'm sick, look at my scans and we'll go through the usual patient history. I got it all down pretty good now. 

As for my tests, thank you all for sending your best vibes and inquiries. The cancer is still there and growing at a slow pace. My doc said that is to be expected for some patients because this stuff works at a slower pace than typical chemo. We talked for about a half hour just on side effects because, well, if you can name a bodily function, I can tell you that my body has malfunctioned with it in the last couple of weeks. Things stablized after I got off the meds for a week, though. The big issues are my nausea, itching and high liver function. The doctor kept asking me if I was drinking, like he didn't believe me. I don't do drinking any more. I'm buzzed for half the day anyway. Why would I drink to get even more buzzed? I just want a dose of reality. But with my past, I wouldn't be surprised one bit if my liver is a little sensitive.

So the good and bad news is I have to stay on the meds for another couple of months. We're still trying to work out how I can avoid the inevitable headache and nausea. The doc suggested crushing the sixteen pills I have to take and mixing it into some kind of meal, like a stew. Unfortunately, the Mariott only has about five items on the room service menu. None are stew. I had the walleye. When in Rome. It was huge. I could only finish about half of it and felt really bad about it as I watched the news of starving people in Haiti. Ya know, I've been to Haiti. We took the kids to this private beach as a part of our cruise. The kids couldn't swim much because of the jellyfish. So that's what they think of Haiti--jellyfish.

I don't really know what to do with myself here in the Mariott. I would usually get the headache to go away at home by playing with the kids or picking up Mad Dog. She's does this cool thing where she grabs my finger. I pretend that she's squeezing the badness out for me. 

Enclosed are some visual aids. I know there are a lot of art directors who try to read this but never get through it because there are so many hard words. So I will try to include my picts. There is one of a ceramic bird type of thing at the Rochester airport. Small midwestern towns love ceramic animals. Another is the most famous landmark here, which is a corn water tower that you can see driving into the city. The other pick is of Mad Dog taking a bath. She's probably doing that right now. 

Oh one update. The second lead story in the news is some teenagers blew up a fish house out on one of the lakes here. Really. Blew up a fish house. I'm beginning to love it here.