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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.

road sign with many directions given My reply:


March 19, 2001

Nope. But that does deserve an explanation, although it won't sit right with many.

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 others.

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.

Robert Young
Dx'd 11/23/99 PSA 1000+ Stage M1c
Webmaster Phoenix5
http://www.phoenix5.org/
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This information is provided for educational purposes only and does not replace or amend professional medical advice. Unless otherwise stated and credited, the content of Phoenix5 (P5) is by and the opinion of and copyright © 2000 Robert Vaughn Young. All Rights Reserved. P5 is at <http://www.phoenix5.org>. P5's policy regarding privacy and right to reprint are at <www.phoenix5.org/infopolicy>.