11/30/01

A week ago, on November 23, I celebrated the second anniversary of my diagnosis while driving driving back from New Jersey where we spent Thanksgiving. Ten hours of turnpike and freeways slipping by gave me time to reflect on the other journey I've taken.

I knew I had to write something on the occasion, when I got back to my keyboard, but I didn't know what to say because my experience has apparently been so different from most men with the disease.

And this bothered me deeply because I can't articulate it.

My problem is that I no longer fear the disease. I know this could change but meanwhile, I don't wring my hands between PSA tests or clamor for another treatment if it rises. Instead, I have embraced my condition and my life in a way that is so foreign to others that I have to seem crazy or in complete denial when I talk about it.

I know most people don't want to hear it. I think they would rather hear there is a cure, something to take them out and away from the disease so they never have to think about it again and this is such an obsession that they can't or won't hear anything else, especially someone who is enjoying his life with the disease.

Don't get me wrong. I'm not anti-"cure." And I know what it is like to live with the disease dominating my life and there are many times when I would like a "vacation" from it all, to do something different. But I'm not talking about that.

The first year of my journal reflects how PCa controlled me, as I kept crashing out the bottom. It wasn't until October 15, 2000, eleven months after diagnosis that I realized what I was doing and could step away from it. I got another punch to the stomach two months later but came away learning more.

I began to note in the emails of other men the fear that prostate cancer creates. As I later wrote, there was something different about this fear because it rendered men immobile. Why?


My First Try at a Theory

On July 3, 2001, I came up with my first theory and wrote "Fear & Prostate Cancer," ascribing it to a society of males who had already been emasculated by their culture and had forgotten how to truly fight. That's an extreme oversimplification but it was, as I said in the essay, my first try at trying to understand the emotional control that this disease seems to gain. I wanted - and still do want - to help men get through the emotional side of this disease so they can better deal with the physical for that is where the cancer resides and not in the mind. But if it controls one's thinking, what chance is there?

I've spoken face-to-face with newly diagnosed men who were so rattled that they couldn't remember what I had just said. They would ask the same exact question a few minutes later. To one man, I put my hand on his arm, said his name and had him look me in the eye and I said, "John, I just answered that question and you didn't hear me. Did you know that?"

"You did?" he asked.

Another man standing with us nodded and spoke up, agreeing.

John looked like a man struggling to come out of a trance and I used it to drive home the point that I had been trying to make, that unless he deals with the emotional impact that this disease was having on him, he won't be able to hear, understand or decide what to do. I don't think that moment erased the fear, but it seemed to have at least a momentary impact.


The Lesson of 9/11: terrorism & PCa

There came a point after the attack of September 11th that I began to see a parallel between terrorism and prostate cancer, in the way that they can effect most people. For example:

  • Each is "inside" us. One is in our body and the other in our communities.

  • Each is silent and hidden. They appear ordinary to our usual detection systems until too late.

  • Each kills randomly. No target is exempt.

  • We fear or worry over what we used to ignore. A piece of mail or a new body pain take on new meaning.

  • Removing one is no guarantee there aren't more that haven't been found. And there is no way to find them.

  • And there is no "cure" or a viable method of prevention. So the terror never stops.

Each can freeze the mind which generalizes the "threat" beyond reality so that the person cannot get a perspective. For example, I saw a statistic that (and I may have this wrong but it makes the point) the US Post Office handles a billion pieces of mail and although there had been only five or so letters with anthrax (making the odds beyond comprehension), people were opening their mail with rubber gloves.

But isn't that the whole point of terrorism?

And isn't that what many face with a cancer diagnosis?


The common thread

That was when I saw a common thread: metaphorical hype.

When anyone - from the media to a politician - wants to characterize a social ill in its most heinous form, they call it a cancer.

    Terrorism is a cancer and we should...
    Heroin is a cancer and we should...
    Pornography is a cancer and we should...

Attach the C-word and people know that it is evil, heinous, despicable and, most of all, a danger that threatens the very core of hour values and existence.

Can anyone imagine any other disease being used to vilify a perceived or imagined evil?

    Terrorism is a heart attack and...
    Heroin is a polio and...
    Pornography is a diabetes and...

No. Cancer has become the ultimate metaphor used to characterize the greatest possible social horrors.


Cancer's history

I did some reading and learned that the word cancer (for the illness) actually comes from Middle English canker which was used to describe a gangrenous ulcer or collection of ulcers in or about the mouth. Cankers also attacked some vegetation and horses hooves and so canker became anything which emaciates, corrodes, corrupts, or destroys and finally it was pronounced and spelled cancer, joining up with the other root that is derived from the crab.

And so we gain not merely a disease but a metaphor that originated in suspicion, fear and ignorance hundreds and hundreds of years ago, when the illnesses were apoplexy, consumption and dropsy and the four humors (blood, bile, phlegm, and black bile) were used for diagnosis and demons were cast out for health.


And then the diagnosis

Because the C-word was born in fear and is still used to convey that fear, is it any wonder that it can terrorize anyone when they are told they have the disease?

It is as if one were rooted in a deep, primitive superstition that had been part of one's tribe for eons, where a member knew that one exact and otherwise forbidden word from the medicine man could invoke death. We now know that it can be done because of the still unknown power of belief. It is also what allows mysterious cures. The person believes it can be done and so it is done.

That is the power the C-word can carry and a power we need to recognize.

Let's dump the medieval superstitions and the metaphor.

Cancer is NOT a cancer.

RVY

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