Wednesday, February 23, 2000
I have suddenly received so many well wishes that I am stunned and warmed more than I can express. I was especially surprised and touched at hearing from people I don't even know. And then there were emails from people I haven't heard from or seen in nearly 20 years. Wow. I don't have the facilities (as in computer facilities) to find them all and respond so all I can say is, thank you to each of you and to all of you for your wishes, encouragement and prayers.
Yes, I really have been in very good spirits. Then with all the good greetings and well wishes, I'm better than ever. (big smile) I'll be honest with you. It wasn't like that until recently when I really came to grips with my condition and situation and had not only a life-changing insight but also a realization as to what I needed to do with that new life and how to do it. I probably should have said more at the time but since several of you asked me in email or asked to be told when I was ready, here it is in brief.
I said I was going to move into cancer education, specifically prostate cancer (PCa). More specifically, I'm going to create a web site to specifically address the social, emotional and sexual issues men with prostate cancer must face. Like certain types of cancer for women (e.g., breast, uterine and cervical), prostate cancer can rip apart a person's sense of dignity, worth and identity and then any intimate relationship the person may have and ruin the prospect of any more.
In recent years, women who have endured and survived this challenge have mobilized to bring support to other women struggling with the same issues. Men have not had done as well. Whatever the reason (and that itself is an issue to address), much more needs to be done. Over 40,000 men will die of it this year and with the male Baby Boomers coming of PCa age (usually set at 50), there will an increase in the number of men diagnosed and there will be an even greater need to build resources to help with those issues. Those with medical degrees can diagnose and treat but men who have faced and dealt with the social, emotional and/or sexual issues are the ones most qualified to help other men with those problems, as women have done to help other women.
That is what my site will do. I will find and gather as much information as possible from men who have been-there-done-that and make it available. There will also be professional and popular articles, if they speak to these issues, as well as links to web sites by survivors who are also trying to help. There will be a list of phone number of men who will talk to other men newly diagnosed. There will also be ways to subscribe to existing mailing lists for the men, lists for their loved ones and lists for patients to reach doctors. These will be a board where men can post (with the option of doing so with an anonymous handle) their stories or their questions. Or their companions can do it. There will also be information on books with the opportunity to order them. (Easily done by linking to sites like Amazon or Barnes & Noble.) Later, the site will also offer mailed printouts (at no cost) of the articles and ways that men without web access can order them through an 800 number.
It will have its own domain name. (I've got one that I like and not only is it not taken but an extensive search of the web turns up nothing even close to the name, so it will be quite unique.) The entire effort will be incorporated as non-profit so it can continue well beyond me. I'll be supporting it with my own funds to get it up and running but hopefully when we get our tax exemption, we can get some grants to expand it with the 800 number and some other plans I have for PCa education.
What is interesting is that just by word-of-mouth, I've been corresponding with a LOT of men interested in this need who have PCa, from university professors to a judge with 20 years on the bench to an oncologist who got the diagnosis, not to mention just plain Joes. But when it comes to PCa, titles disappear. We're all just guys looking for help. That is what the site and the project is designed to fulfill.
While there will be information on PCa, types of treatment and even a glossary of words and acronyms the patient will encounter and may be too confused or embarrassed to ask (e.g., PSA, Gleason score, ADT), the emphasis will be heavily on the social, emotional and sexual issue men come to deal with, especially in treatment and that will rely on other men who have dealt with it. It will be PCa men helping their fellows, sort of a PCa buddy system.
The key will be making the site widely known to not only reach men with PCa or to make us a recommended resource, but to gather more and more first-hand stories and information to help them. Much can be done through the Net (and I've been making some of those connections in anticipation) but there will also have to be just a lot of plain ole hoofing and hawking and to get the media to carry stories or mentions about it, with URL. Given the issue and that it will be non-profit (with no ads, as you find on some cancer sites), that should be easy. And, hey, if anyone is comfortable talking to and getting media, it's me. I've been doing it since the early 60s, back in my political heydays. Because of the need - and a need that is going to grow dramatically - I'd like to make it THE site on these issues. It will just require a lot of work, which is why I'm "retiring," so I can give it that attention.
That's why I'm so excited about it. The project requires writing, HTML (which I love to do), PR and the most essential prerequisite: a webmaster with PCa who knows these issues and continue to face them every day. It's sort of like that "hair club" TV ad in the US where the guy says at the end, "And I'm not only the president, I'm a customer." The site will be for me as much as it will be for any man with PCa.
With luck, the site will be on-line in another month. I'll be sure that someone lets you all know.
To close out with a couple of fast housekeeping items:
Someone kindly pointed out that my use of a four-letter word in Letter #2 could block a site that webbed my material because many libraries have these "filters" to prevent kids from being exposed to obscenities. While I personally disagree with such filters, they exist and anyone who webbed it should decide if it should be changed. If so, feel free to go in and look for the world "sh_t" (to avoid doing this again) and spell it as I just did.
I just realized that when I get my PCa site on-line, a Scientologist with prostate cancer who has that filter system won't be able to access it because of my name is on the secret blacklist. This is insane and tragic. (shaking head in dismay) I'll let him try to figure out why he is denied access a site to help men with prostate cancer.
Another housekeeping note is in response to several emails. No, the cult has not bothered or harassed me on this. Maybe there will be a détente, although it is not their style.
Let me close on this. Men, if you are 45 or older, please get checked. It is statistically unlikely at that age but start the pattern and build the record so your doctor can see the ranges of your tests. Meanwhile, know the warning signs and heed them. To get an education, start with: The National Cancer Institute <http://cancernet.nci.nih/gov/> which has information and links.
Again, my thanks. I'm sorry I haven't been able to respond to you all but Eskimo's news server (where I can at least reply to Usenet posts) is as clunky as they come.
I promise you'll hear from me so you can see that your well wishes were gratefully accepted and lovingly implemented.
Robert Vaughn Young
A Very, Very Lucky Guy
**You must be the change you wish to see in the world. - Gandhi**