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.
Notes From That Wilder Shore:
My reply to, "Why don't you try ________?"
After I posted that my PSA had risen from 3 to 30.7, someone asked if I had tried some other protocols and why wasn't I using some other drugs? The person said he wasn't suggesting them but asking if I had considered them.
March 19, 2001
Nope. But that does deserve an explanation, although it won't sit right
I haven't considered Exisulind or someone's protocol for the same reason I
never considered flax oil, MGN3, PC-Spes, licorice root or the other 3,000
regimens that have passed through this (and other) lists.
As many know, I've dug up resources for people on more treatments and drugs
than I can count, merely because they asked if there was any information
about it. So there is no lack of my ability to track down information.
It is my attitude and perspective about this disease and my life.
And this is where I am going to upset a LOT of people.
I have absolutely NO interest in (my words) scratching and clawing for a
few more months/years of my life which I can then spend scratching and
clawing for a few more months/years.
I think there is a better use of my time, not to mention how it effects my
attitude in that time spent.
In my estimation, I have already beaten this disease. Given my condition at
diagnosis, I should be dead by now. The fact that I am not and that I can
continue to make a contribution has given me more than I could have ever
imagined. In that vein, I consider myself the luckiest man in the world.
Let me give you something that I've said before (and that makes some people
grow pale). If I were offered a full cure of this disease, on the condition
that I would be returned to my pre-diagnostic state (with no disease or
pain at all) where I have to give up and lose everything that I have seen,
realized and achieved since my diagnosis on 11/23/99 (and that would have
to include every friend I've made, help that I've provided, my Web site and
finally my Caren), I would decline it in a nanosecond.
If that startles some, merely take it as my view of the value of my life to
ME after diagnosis.
In my view, my time is better spent helping others. And while one might
say, "But treatment _____ would give you more time to help others," I think
that is wrong. The time I have gained - against those odds - came from my
work, not the drugs. Yes, the Casodex dropped my PSA but I also firmly and
completely believe that my system responded so well BECAUSE of my attitude
and my work.
So we seem to have a Catch-22, don't we?
No, not to me.
It is not relevant to your question but let me say that I really have no
problem with this disease finally taking me. But, if so, it is going to do
it on MY terms. Right or wrong, it will be done MY way.
In other words, my personal integrity (clearly my own definition) is more
important to me than anything else.
Additionally, I am sincerely stubborn and laced with a deep disrespect for
the disease. In my view, all it can do is kill me. Meanwhile, I am the only
one who can relinquish my dignity and identity. That is why I keep a sense
of humor that bothers many. I would rather laugh at the disease than wring
my hands and give it one whit of control over my life. It did that for the
first 10 or so months after diagnosis, sending me into black holes until I
recognized the pattern and the effect. The cancer was like a sadistic
torturer who wanted to break me, to convince me that all I had to do was
relinquish my identity and my integrity in order to live. All I had to do
was give up.
Then I saw the trap.
What sort of life is that?
So color me whatever you want but I will not beg, plead, scratch or claw
for anything again. Nor will I waste my time pursuing treatment X or Y if
it doesn't fit my temperament, which I admit is incomprehensible to most
But, you see, that is what often defines personal integrity. It makes sense
only to the individual. Yes, it also invites those who seem insane. That is
the danger. As with any freedom, there is a danger but that is no reason to
end the freedom.
Let me put it this way.
I have very little control over how LONG I will live. I can wear a seat
belt, bullet-proof vest, parachute or any number of precautions but at any
moment, I can be taken by a heart attack or any natural or unnatural
disaster. But I do have full and complete control over HOW I live in
whatever time that I have.
It may not make sense to others but I do
what I can to explain how I feel
(see http://www.phoenix5.org/menuRVY.html )
I'm sorry I took so many words to explain my point but, being a writer, I
guess I still think I am paid by the word. (laugh)
I do appreciate your concern and that of others but, believe me. I am VERY
happy with my life and decisions. I don't think they are for others. Life
is not something you get from a one-size-fits-all rack.
Dx'd 11/23/99 PSA 1000+ Stage M1c
To help overcome the effects of prostate cancer