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Happy New Years. Welcome 2014

And that's a bold welcome.  It was over 7 years ago that we didn't think that I'd be here but here I am.  I have not had any tests in about a year and I need to get scheduled for one.   But after 7 years I think I'm finally over the hump about apprehension.  I will get it scheduled and with confidence that I think I beat this cancer.  

And that sounds damn good to me!

But cancer has not been all bad.  I learned a lot since being diagnosed about the fortitude and courage in the folks I met along the way.  I have lost a couple dozen friends since this all got started but many of my friends that were even worse than I was when I joined HealingWell.com are still around too.  This is awesome news for anyone newly diagnosed.  And I have walked the walk and know how helpful it is to hear a long time survivor tell ya that there are many like you and you can do great.  Those words bounced off of me early on.  I didn't really believe them.  When David died last year I was discouraged because I was feeling good and was believing that he would too.  But the last year of his life was a tough one.  He went through so much with chemo and other drugs and it really beat the heck out of him.  I have corresponded with his widow a few times and I am happy to report that she and their son Brad and doing well and have chosen to keep alive David's charity.FLHW.org has raised a quart million for cancer research.  Brad is the new spokesman.  

I am 51 years old now and I look up to a 16yo prostate caver spokesman.  And that's the way it should be.  He paid a much higher price than I ever did.  God bless you both Mary and Brad.

This last October my work as a volunteer in prostate cancer advocacy reached a pinnacle.  Per the attached picture I was elected into the society at the American Society of Clinical Oncology.  Me a lowly patient being recognized and made a member of an organization on the smartest oncologists on the planet.  This membership has given me a very interesting view that most patients never see.  I better understand the business of oncology, I better understand the painstaking research necessary to make a difference, and I recognize how important it is to work as a community as opposed to individual effort.  With that I have started a new website dedicated to prostate cancer advocates who want to help others.

The Prostate Cancer Advocates Forum is a grassroots effort to allow interfacing between advocates and the team of physicians I work with at ASCO and at SWOG.  But I don't want this to the my effort but rather the effort of all advocates and thus I have formed committees to help the site grow beyond my vision.  But please stop in and pay it a visit.  

I am still teaching in Church but have enjoyed a month off.  Next Tuesday we study the book of Job.  That will be a 6 week course.  

I have scaled back my posting at HealingWell.  It was getting stressful.  My hope is that giving it a few months I will return but that is iffy.  The cause of the stress is ironic.  With everything I do as a volunteer I received recognition for the major organizations but I also received grief from a small patient minority that feel that I've left out the patient in my advocacy work.  But let me be clear, it is ONLY the patient that I joined SWOG and ASCO.  And I only care about helping patients get through this terrible experience.  It's a shame that volunteers would ever be ridden in a negative light.  But when I read the comments section at CNN.com on just about any given article I see that there are folks that are only happy if they are trying to make someone else unhappy.  So I should not bee too surprised that I got into someones crosshairs. So it is, just time to move on.  C'est la vie!

With love and well wishes ~ Happy New Years!  May 2014 be the best ever! 
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Comments

4 Comments

Bingung Jeneng
By kucingjoget
I'm impressed, I must say. Very rarely do I come across a blog that's both informative and entertaining, and let me tell you, you've hit the nail on the head. Your blog is important; the issue is something that not enough people are talking intelligently about.
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Bingung Jeneng
By kucingjoget
Excellent post, I agree with you 100%! I’m always scouring the Internet for new information and learning whatever I can, and in doing so I sometimes leave comments on blogs. I don’t do it for SEO purposes necessarily, but to learn new things.
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Diane Norton
By Diane Norton
Hi Tony, I came upon your blog today and was so pleased to read your story. We connected in the past but not sure you will remember me.My husband, Steve, is now a 7 year cancer survivor. His care is being monitored at Philadelphia's CTCA. In May he found that his PSA had suddenly doubled after 6.5 years of very slowly rising. He had his 3rd Lupron shot on Dec. 29. Hopefully this was the last one he will need for awhile. Intermittent therapy is what his oncologist team and we agreed is the way we are going. The Lupron is the pits but a small sacrifice to kill the cancer. So happy to read you are doing so very well. Diane
Millie Glenny
By Millie Glenny
Hi Tony, Thank you for giving people a place to go for answers and support. My husband is just starting this journey. Looking into protone therapy but he has Medicare and Kaiser. Do you think he will be covered for this type of treatment?