Tony Crispino's Journal
Happy New Years. Welcome 2014
Written Jan 7, 2014 1:02pmAnd 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!
Written Aug 24, 2013 1:15amWhat a terrific weekend and following week. Ruth and I were near Mount St. Helens in Washington state touring around with Todd and Amanda our friends forever. Just a reminder that Todd and I met after he was diagnosed with prostate cancer with a 3216.16 PSA seven years ago. SEVEN years ago and going strong. We Kayaked. We drank some wine. We boated. We dined. We loved!
Tonight was Ed Randall's Bat for the cure night at the baseball game. We had a blast. With again, friends from the PCa front my friend Jason threw out the first pitch with his boys and it was fun to watch.
Funny though. We're at the game trying to give away a special blue bat signed by all the team members for the Mets minor league affiliate the Las Vegas 51's. It was simple. Fill out a card and we'll send you some information about PCa and you'll be entered to win the bat. But many men did not want to "receive anything. They're tired of receiving things" was a common response. One 50+yo man was rude about it and I kinda wanted to give him a DRE with the bat but something got in the way...
Last June I completed by two years ecclesial ministry program. I am now a minister and doing this in frustration was probably not a proper thought. I continue learning this fall in the University of Notre Dame STEP program. I'm going back to school again hopefully to better myself.
So did any of this help me? Well I told the rude guy that I understood. That I ignored all the crap that came in my mailbox about my health until I turned 44. I told him that would be about ten years younger that he was. He agreed. I told him that never thought for one moment ~ that in a fast NY minute, my life would be changed and would never be the same. That I wished I had met me a few years earlier.
He signed up for the chance to win the bat.
Ten years ago he'd a got the DRE.
LOL. So it is that I don't have the lack of patience that I used to. I thank God for that. For the chance to become patient.
My last PSA test was zero in February. My oncologist, Nick told me as far as he is concerned I'm cured. Those were some awesome words!
Peace and Love.
Prostate Specific Anxiety
Written Jan 22, 2013 12:14amWell it's a new year and while Lance Armstrong is out of cycling forever I'm not so sure I am. What I mean is because of my diagnosis I will continue to be tested for cancer the remainder of my days. And while these tests have been less stressful over the years, it always happens that it's in the back of my mind when testing gets near. We have a term for that in the survivorship community. It's called prostate specific anxiety. It's a play on the words for the key blood test ~ the prostate specific antigen test ~ we have to have drawn. So it is that the cycle continues this week. Thursday we do the blood draws, Monday I see the oncologist. And we'll do it again. and again, and again, and well you get the picture...Funny how a blood draw for Lance Armstrong ended his cycling, but it causes mine.For some reason I feel a bit more distress on this go. Not reasonable from the standpoint I have strung many great results together over 6+ years. But not unreasonable either when you consider that the average remission for a prostate cancer that was determined to have spread outside the prostate in the way mine did is about 6 years.The anxiety continues. I'll repost on Monday.I am getting close to meeting a goal I have set. I have just four more ministry classes to attend and I will have a commissioning ceremony in the middle of May and it's a blessing I believe that the Lord has saw me through it.As He has also through my journey with cancer...