Friday, November 20, 2009

Waiting and Gifts

I'm still here. Waiting. I have about a week and a half until I finally get my first post second relapse treatment. I'll be swallowing about ten pills every day and we'll see if it's working around Christmas time. If it doesn't, Plan B is to go to the Mayo Clinic for a combination drug that's showing promise. That's if it's not too late. Because I have only about a 30% chance of the first drug working, I've already scheduled an appointment with them. The head guy there can be seen in February at the earliest. So I'm not seeing the head guy. 

As I wait, the cancer spreads. There's nothing anyone can do. The day is very difficult for me. I'm very tired and sore. Sometimes drugs help and sometimes they don't. I'm taking naps now but that's not good because I'm not so tired at night. 

I want to tell Conner. I want to tell him to remember every second of this. But I can't. In fact, I haven't. We haven't said anything to any of the kids yet but eventually it will become obvious. When I do, I have to put it in good kid terms. Harmless and non-committal. But I want to tell them differently. I want to tell Conner to lock in each second.

I wish I was Michael Keaton in that movie where he died from brain cancer but filmed all kinds of footage of himself. I just don't know what to say. Plus I look like shit. 

I read other people's cancer blogs and they are much more upbeat. Some of the day I'm like that. It's those times when I tell myself that this is now a disease like diabetes and I just have to live with it. Those are the times I like the best but I feel like a fool thinking that.

The holidays are coming up. My wish is that I am given the gift of mind discipline. I want to think the right things, good things at the right time so my family and friends can enjoy the moments. 

Wednesday, November 18, 2009

night notes

Up late. Collarbone is sore again today. Worried that the new treatment won't work. If it doesn't, I'm up the creek. Odds aren't with me. Studies aren't with me. Need to go to bed and forget. Love sleep. I wish this wasn't happening to me. Chest pains are back. No itching or night sweats. Miss worrying about something stupid. Still mad at God. Not speaking to Him anymore. Still haven't told kids. Conner is catching on. Hate me for inflicting so much pain. Wish wife would have met someone else so she could grow old with someone together. Look worse today. Disease keeping hair from growing. Look like Patrick Swazie, not the dancer or bouncer but the guy in People mag who had cancer. Now groin and leg hurt constantly. Growing there too. Waiting. Hope Kate Levin's okay.  Wonder. Wish I could be happy. Can't enjoy happy moments. Love my new baby. She smiles a lot. Hope McKenna dances when I'm gone. Not sleepy but tired. 

Friday, November 6, 2009

I couldn't kill cancer. But I'm gonna kill his friends.

"I don't understand the current thought of oncology. Take you, for example. It's clear your cancer rejects chemo. But the answer with most oncologists is more chemo. And the ironic part is, while the cancer gets stronger every time, your body gets weaker." 

That was one of the first things my new doctor said to me. His plan is if you can't kill the cancer cells then kill the many cells that feed cancer cells. Eventually the cancer cells weaken and sometime after that, enough cancer cells die that you can live with it for a while. At least that's how the theory goes. 

Sounds simple but there are some pretty large drawbacks. First, it takes a while. Cancer can still grow even while you're taking the medicine because you're not killing them.

Second, it depends on clinical trials. The drugs are new and experimental and almost all are in clinical trials across the country. So you can't just go to the doctor and get an injection. You have to wait and look around. 

That's where I've run into trouble. My doctor wants to get me into one of two trials but neither start for the next three weeks. In the meantime, I have to bide my time and hope the cancer doesn't spread to any place important. The best the doc can do is get me some drugs to slow the spread a little. It's sort of the way it goes. 

The third negative is because these drugs are new, the side effects can be quite adventuresome. I'll try to be clear about what's happening to me on the blogs so you can feel like you're right there with me puking away. 

My doctor won't give me a timeline of my life expectancy. I would imagine it's because this is so hit or miss. Sort of alarming. Obviously, now it's a real long shot of ever completely kicking this. But that's perfectly fine with me. I'm okay with having cancer. I'm not okay with dying from cancer.  

In the meantime, my body's really sore and I got nodes popping up all over. I can't lift much with my right arm because of a node that's digging into my shoulder and I can't lift much with my left arm because of a node on my shoulder and one on my chest. So when I hold the baby I try to balance her. She's getting chunky so I don't know how much longer that'll work. I'm very tired because my body is busy fighting the cancer. I look like crap, worse than I feel. The kids still don't know anything's wrong. Sort of hard to tell them.