Wednesday, November 3, 2010

Somewhere I'm in there

This is me now. It took awhile to get the best pose and best lighting. It was the best I could do. For a long time I was very sad that I've gone from a 43 year old man to a 73 year old man.But now I understand that it is still me. I always wonder if complete strangers know just by looking at me. Not that it's a good or bad thing. Quite honestly, I usually wonder right after a stranger was nice to me. As if they're being nice because they're taking pity. Once again, not a bad thing. I just wonder. I rarely take pictures any more. I don't want people to remember me this way. Sherri once talked me into taking a picture with Maddie because I don't have anything with us together. I did. Boy, do I look terrible in it. I tried to smile. 

"She will suffer the needle chill. She's running to stand still." Bono, of course.

Some reduction, sort of

I have been waiting to write this to see what my status was. But it's been so confusing.

My itches are still around and getting worse, if that's possible. No drug can help it. We've tried just about everything. Even so, my scans came back showing a 20% reduction. It's really not 20% in the way you or I would understand it. What they do is pick five or six tumors at the beginning of the trial. Then they follow those seeing how big or small they get in reaction to the medicine. Then they take the cumulative and divide it by the number of tumors. That would be 20%. So if one tumor reduces by 70% and one not at all, that's still 35% reduction. And then there are tumors that don't count on the trials but can still kill me nonetheless. I have a lot of those.

But what basically happened is the treatment stopped the growth of all tumors right now but we're waiting for them to start up again. It would make more scientific sense for them to start up again. The tumors on the right side of my neck are down quite a bit. The big motha of a mass on the left side is unchanged. A tumor in my left arm pit is smaller too. Everything inside of me is slightly smaller to unchanged.

Yes, this is cause for some optimism, if it wasn't for my symptoms. It is still confusing my docs and making my life relatively miserable. The symptoms aren't just accidental. They're very real and very telling. Basically, nobody has much of a clue as to what's going on. 

I also passed through my one year anniversary of my second and latest relapse. Back then, I had this one small tumor in my neck. One year later, there's a tumor on about twenty different places. Three or four in my right shoulder that keeps me from doing just about anything strenuous with my whole arm. 

My doc wants to put me on a drug called bendamustine once we can figure out what this one is doing. It's a much harsher drug but we both think I'm going to need it. This could be the year of the harder drugs.

Oh and one other thing. I got another bad cold. So while I write this, I have itching, some left over body aches from the treatment, some fatigue from both, runny nose, sore throat, stuffy head, oh fuck it, I nothing on my body works right now. My chest pains are even back. And I gotta pick up Maddie in an hour. I took all the drugs I thought I can take. I'm going to take more.