This is one of several essays from my private cancer journal. It is not intended as anything than a record of my states of mind as I struggled with the disease and the effects of the treatment.
"You don't drool, man!"
I finally called in for the results of my tests from 8/31. My PSA is up to 21.8, from 9.5 in mid-June, so I'm definitely going refractory.
I knew the cancer was spreading but there is always that hope, especially since I stopped the nilutamide 7/10.
This means that there is really no stopping it now, not that I thought it could be. But, there is always that hope.
I wonder how much time I have? ("Enough to make a difference," is the reply I've heard.)
I'm trying to (make a difference). The meeting with the Mayor is tomorrow for the presentation and photo. I've been working my ass off to get material up on the site, especially the proclamations. I have so much to do and there are too few hours in the day because the energy level is dropping. It is the cancer.
I sent out some emails to some media to see if we can get SOMEone there. Meanwhile, I have my own photographer coming. Mark will take photos and I'll scan them and get them on the site. But I'm quickly learning that Ohio is not California when it comes to the media. (laugh)
When I get through tomorrow (which includes the support group in the PM), I'll have to start working on other things to get P5 to live past me.
How much time do I have?
Enough to make a difference.
I have to make it my mantra.
We missed the PBS special on death and dying. I find it interesting that this is one of the few times when I WANTED to see one and missed. Another part is on tonight so I'll try again.
I'll have to tell Caren about the new PSA count. This is always the hardest part, telling someone such news.
But I've had the signs lately. The pain in the lower back is increasing. There are other aches but I don't know if they are the cancer or just arthritis/old age. This damned disease makes one a hypochondriac.
I just have to get my work done and make sure P5 will survive me.
I wrote "live past me" earlier. I guess "survive me" is more politically correct but I don't want it to "survive." I want it to live.
I need to write more in the journal now. I need to record what is happening with me.
I just had an idea. I wonder what it would be like to write letters to men with PCa who will follow me. But since I'm dying, what can I say? Most don't want to hear it but there will be some who want to know. I need to write to them. I need to record this journey to let them know that it can be traveled with a minimum fear and a maximum dignity, as possible. I think that is what I am supposed to do. Or maybe that's what these essays are: letters. I wonder where the mailbox is?
I keep thinking of that line from Fosse's "All That Jazz," where the comedian (it is supposed to be Lenny Bruce) asks what dying with dignity means and offers his definition, "It means you don't drool, man." I still like that line although I'm sure it would offend many. Fosse had the right attitude.
I have to keep my sense of humor.
Back to work.