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A Year in Remission ~ And the Price...

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Prostate Cancer
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Tony Crispino
Veteran Member
Joined : Dec 2006
Posts : 8160
Posted 4/3/2008 10:07 PM (GMT -8)
A new perspective:

Many of you have been heroes to me both when I first came here and even new members since.  On March 23, I went past 1 year with an undetectable PSA.  Wow what a year!  Staying positive is my motto, I preach it here.  There were times it was difficult.  I am now a moderator here, but I am also a patient, too.  My signature tells a story that shows various levels of success.  I also blog a site for friends and family, and for myself to vent or articulate a feeling about this experience.  First off I am still positive, living a desert outdoors life, RVing, Dirt Biking, Ultraliting, Boating, much more, and a productive job.  I wanted to post this at my blog, and may still, but it's probably more useful here.  I started out well.  I came here (good start) at the age of 44 and learned about the process of treating PC and about courage.  You folks said I had courage but it was you all that showed me how to not be afraid.  Fact is that I still have days I worry about the relapse that I was told is likely.  It doesn't stop me from living though.  I went back and read my posts from day one and am amazed I kept my sanity. (at least some of it).  Here's how it all started:

daVinci:

On February 16, 2007, we accomplished removing the prostate while staying continent and having useful erections.  But we still did not get good results that we had hoped for.  I had a bad pathology and high probability of return.  pT3b, bilateral seminals involved, extraprostatic extension to the bone, positive margins, and a 4+3 Gleason.  I was told it may also still be stage IV but the lymphs were clean (10 removed).  The surgeon said 60% chance of return.

Oncology:

My oncologist stated 90% chance or relapse and had the slides sent to Johns Hopkins.  Epstein declined me for a clinical trial with false good news.  There was a clerical error on my PSA and the time lapsed on entering the trial.  No harm no foul.  The trial was abandoned.  (actually if I had started the trial I would have had free care for life after the program was stopped).  My medical oncologist today still thinks radiation was not fruitful but he OK'd me for the procedure.  I have a great oncologist and he has allowed me to do my own research and add my thoughts each step of the way.  I optioned out of chemotherapy for now.

Angrogen Deprivation Therapy (ADT or also HT):

This started out well but did not continue to be without side effects.  Hot flashes happen but have been tolerable.  Headaches have increased, and are still increasing.  Not too much to medicate, but enough to consider it.  I have completely lost the libido and that has been the biggest psychological down turn.  Using meds to get erections is fruitless if you are not sexually driven.  Also my short term memory is not nearly as good.  Also my short term memory is not nearly as good.  tongue   Still I must remain on it at least another year or more.  I take my bone meds, and also my supplements outlined in the Myers book.  But I want my dang sex drive back.  eyes

Radiation Therapy:

Standard IMRT 38 sessions just over six months ago.  I breezed through the treatment.  Walked many miles through beautiful Utah, Arizona, and Nevada.Walked daily afetr treatments about 3 miles or more.  No side effects.  At First.  If I drink a bunch of wine I am incontinent now.  I am alcohol free pretty much these days.  So its better.  Occasional drips are not enough to wear pads.  I hear this will get better in time.  I can tolerate the side effects.

Additional side effects:

I have high blood pressure and have had to intervene with meds. (Not good for the libido or the erections, what ever those are). Stamina is lowered by the combination of all the above.  But I am still quite active and working through light fatigue.  (working very hard probably isn't helping the fatigue).  I am doing OK with the weight, I was supposed to gain, but actually below the daVinci weight. yeah

Financial effects:

Because of a necessary job change, COBRA, travelling for treatment, I've blown over a 100k in savings over the last year and a half.  I was very lucky to save that much but now it's gone.  (lovely housing market crash doesn't help either).  Still I will rebuid it.  I don't fear the financials.  If I have had to make changes they are not too over bearing.

Spiritual effects:

I have decided to pursue a closer relationship with God and my religion.  It was much improved ten years ago by the loss of our baby. But it is now my way of life.  And this has made all the above meaningless.  The biggest gain in getting cancer.  Because of this I have no regrets and do not sweat the above small cancer stuff.  By now you know I am a devout Christian.  Sunday church, and Monday studies.  And every day practice.  It used to be my business that religion stopped at the doors of the church, but now I know that is where it begins.  I can go on about it but just know that my cancer lost it's battle to Jesus. 

One year Later:

I am still in remission.  I could have been tested by the job, money, and losing my mother less than a month ago, but instead I am stronger.  Better able to fight disease.  Better able to Love the little things in life.  Better Lover of my wife whom without I would only be half a man.  Cancer has made me some very special friends that I have never shook hands with.  Cancer has been a positive, not a negative.  But cancer still sucks.

What's Next:

No one knows physically.  But I will continue to thrive with my beautiful wife, Ruthie, my son, my friends.  I am a skilled engineer and Account Executive.  And when I see the desert, I ride, hike, and thrive.  And when I come here, I have found a great place to be. 

Thank you all!  Thank you for letting me moderate and help this site thrive.  I have to be up in six hours so I'm done for tonight.  I hope this was useful to someone.  It was for me. Overall, the price was affordable.  God Bless you all. 

Your Friend,

Tony

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mlbsm
Regular Member
Joined : Mar 2008
Posts : 85
Posted 4/4/2008 2:11 AM (GMT -8)
Spent the night on your site with a pot of coffee.

I tried to leave a note in the guestbook, but my system said something about cookies and wouldn't allow it.
I am NOT a computer person.

Anyhow, my thoughts are with you (My prayers need a ton of work on so I leave them to ML) and hope your remission last's forever.

Billy
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Gordy
Veteran Member
Joined : Jun 2005
Posts : 528
Posted 4/4/2008 3:03 AM (GMT -8)
Tony-

You're an inspiration and hero to us all. Thank you.

-Les
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BillyMac
Veteran Member
Joined : Feb 2008
Posts : 1858
Posted 4/4/2008 3:46 AM (GMT -8)
Tony,
You are an inspiration pure and simple. A positive attitude is contagious........thank you.
Bill :-)
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GreenAcres
Regular Member
Joined : Jul 2006
Posts : 474
Posted 4/4/2008 4:21 AM (GMT -8)
Tony, you have a strong spirit and are truly (like all our men) a hero. Your ability to put your experiences into words is a treasured gift to us all.
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IdahoSurvivor
Veteran Member
Joined : Aug 2007
Posts : 1015
Posted 4/4/2008 4:45 AM (GMT -8)

Tony, dear friend.

What can I say?  A terrific update on your journey!

You've given me inspiration and courage ever since I joined HW and I countinue to pray for your welfare.

Kind regards,

Barry

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Jim-N1BRP
Regular Member
Joined : Jul 2006
Posts : 165
Posted 4/4/2008 6:01 AM (GMT -8)
Tony,

You are the drive behind me to do well

Thanks
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James C.
Veteran Member
Joined : Aug 2007
Posts : 4464
Posted 4/4/2008 6:26 AM (GMT -8)
Tony, a fantastic, touching update.  I am pleased that you have changed adversity into a deeper relationship with our God.  For believers, this is a well that too few go to in their struggle....

James C.

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DanmanBob
Regular Member
Joined : Feb 2008
Posts : 467
Posted 4/4/2008 6:26 AM (GMT -8)

Tony,

Thanks for sharing and best of luck for continue improvement.

DanMan

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biker90
Veteran Member
Joined : Nov 2006
Posts : 1465
Posted 4/4/2008 6:32 AM (GMT -8)
Hey Tony,

Your open, friendly and positive attitude are an example of how we can deal with and conquer cancer. My hero is Jimmy V. and your are certainly cast in the same mold.

Best in the future my friend...

Jim
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Frank1205
Regular Member
Joined : Feb 2008
Posts : 311
Posted 4/4/2008 6:36 AM (GMT -8)
Tony,

What words can describe your journey. You are an educated, passionate man who is a natural born leader. I cant tell you how much your helping others like me battling with this disease really means to us and our families. Billy and I share a surgery date and are just a couple of new guys starting our journey. How many others have there been. What fears, questions and feelings would have gone unattended without your and the other moderators of this site. And to be helping these many others while you and your family have your own challenges and fears. You arent just a leader but a great one.

God Bless you and your family. I shall keep you close to my heart.

Frank
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myman
Veteran Member
Joined : Feb 2007
Posts : 1219
Posted 4/4/2008 6:58 AM (GMT -8)
I'm glad you did this post. It's good to review where you've been and how far you've come. Sharing that is beneficial for everyone.
You've not allowed cancer to take who you really are...a man who loves his God & family, a fighter, a friend and a supporter of those in need.
Thanks for being here.

All the best to you Tony,
Susan
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Mike A
Regular Member
Joined : Feb 2007
Posts : 213
Posted 4/4/2008 7:31 AM (GMT -8)
My God, Tony!
What a post! It served as a reminder to me (we all need them don't we) as to why you have been one of my heroes here on Healing Well. Your outlook on life, your attitude and your gentle good humor are an inspiration to us all! Too often, many of us sweat the small stuff, and get lost in our own dealings with this terrible disease. As you said, the price is high. But thanks to caring souls like yourself Tony, it's a price I can still afford to pay. God bless you, and continue to get well my friend.
Best,
Mike
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norskie
Regular Member
Joined : Jan 2007
Posts : 376
Posted 4/4/2008 7:57 AM (GMT -8)
Tony

Great post, you are an amazing guy with an unbelievable attiude that I take to heart each day and also try and live by and not fret the small stuff. It's in God's hands and we are his messingers to help others through all this and you do an outstanding job while dealing with your own journey with this nasty Pc. May your remission last a lifetime.

Norskie
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Doting Daughter
Veteran Member
Joined : Aug 2007
Posts : 1064
Posted 4/4/2008 10:24 AM (GMT -8)

Cancer sucks, but you ROCK Tony!  Words can't express how much you have helped me and my family.  Your support at the most difficult time in our lives will be something we will ALWAYS remember! God bless you and your family! 

C

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War-eagle
Regular Member
Joined : Sep 2007
Posts : 219
Posted 4/4/2008 12:46 PM (GMT -8)

Tony,

What a journey and what a price. But you and I know that the price is not that high. It is small compared to the price that has already been paid for us. As ussual your post shows to all what some of us have to go through to beat the monster. You inspire me every day. You are my friend and fellow traveler.

Peace, love, and War Eagle,

Walt

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mozart250
Regular Member
Joined : Jan 2007
Posts : 102
Posted 4/4/2008 12:55 PM (GMT -8)
Tony:

Great post.  And may it stay in remission.

Rob

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CPA
Veteran Member
Joined : Feb 2008
Posts : 655
Posted 4/4/2008 1:24 PM (GMT -8)
Greetings, Tony.  Count me as one of those friends who has never had the privilege of shaking your hand.  I'd look forward to that and count it an honor to meet you one of these days.  Thanks for your encouraging words on this board that have helped all of us at one time or another.  We continue to pray that your zero's will continue forever and you will stay in remission.  David

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mvesr
Veteran Member
Joined : Apr 2007
Posts : 823
Posted 4/4/2008 3:40 PM (GMT -8)
Dear Tony. You are such a Trooper. Hang in there buddy.


Mika
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Tony Crispino
Veteran Member
Joined : Dec 2006
Posts : 8160
Posted 4/4/2008 4:33 PM (GMT -8)
I've been readin' these posts and as Walt says, you guys make my heart sing. Like I said my inspiration comes from all of you. The people here are not the "woe is me" crowd, but rather the lemonaid makers. A great lesson in my life and I do draw from it. It's great to be friends with you all. Thank you again. I wish we were in the same building because what a party it would be, no? it would take time to personaize all my thanks so we'll do it as we go OK? Stay well and stay close......oh yea.....Stay Positive!

God Bless you.

Tony
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Dutch
Regular Member
Joined : Feb 2007
Posts : 400
Posted 4/4/2008 6:50 PM (GMT -8)
Tony:

Congrats on the one year anniversary - may you celebrate many more.  You are the greatest inspiration to us all - what an attitude!!!!  Best wishes.

Dutch

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Tim G
Veteran Member
Joined : Jul 2006
Posts : 3057
Posted 4/5/2008 11:34 AM (GMT -8)

Tony--Thanks for sharing who you are with us on this forum.  Nobody here asked to get prostate cancer, but without it none of us would have the privilege of getting to know each other.

I count you as a friend and feel cheered every time I read one of your posts of encouragement, hope and courage. I was touched by what you wrote, as I have been by others here (I think of Gordy's message about his recent meeting with Bill, a member here).

I, too, have paid more attention to my spiritual life since being hit below the belt with a diagnosis of prostate cancer.  A man in my church who also had gone thru cancer diagnosis, met with me weekly during the first year after I was diagnosed.  I was able to be an emotional basket case, ask hard questions, and be wonderfully supported by someone who knew and cared about me.

This forum functions similarly.  The men and women here are the best!!

 

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livinadream
Veteran Member
Joined : Apr 2008
Posts : 1382
Posted 4/5/2008 4:57 PM (GMT -8)
when I started this journey 9 months ago I am sad to say I searched for people my age that had this type of cancer. this forum has provided a wealth of resources. You are an awesome moderator Tony and this forum is fortunate to have someone like you. I reposted my caringbridge site so hopefully it can be viewed now.
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anniea
Regular Member
Joined : May 2007
Posts : 234
Posted 4/6/2008 1:42 AM (GMT -8)

Hi Tony,

What can I say YOU ARE THE MAN!!! I hope the man upstairs continues to look out for you. You have had one heck of a year and you still remain positive and are always so willing to extend a helping hand to all of us. God bless you my friend.

Love,

Diana

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dutchy
Regular Member
Joined : Jun 2007
Posts : 75
Posted 4/6/2008 3:53 AM (GMT -8)
Keep going Tony! We're so happy for you. Dutchy
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