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A call of hope!

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Posted 5/14/2007 2:17 AM (GMT 0)
As many of you know, I have had much to report through the past months.  And in much of that, the challenges grew harder.  I have taken a month off here as I needed to come to terms with difficult decisions.  As a stage III patient (pT3b, G4+3=7, PSA 19.7, four positive margins) I have no clear path for treatment.  My results had City of Hope, NCI, and all that I read tell me that there is likely a 70-80% chance of return of this stupid disease after my surgery.  So what could I do?  Many of you who know me know I headed to the mountains, streams, and deserts in my RV with my wonderful wife. 

Upon my return was reality.  I needed to make decisions.  Well I chose to let others do that for me.  I was familiarized with the ongoing sanofi-Aventis pharmaceutical study.  Treatment for late stage III PC patients.  The choices for them were to treat me now with systemic treatments or to wait until my disease was returning to above 0.4.  They ran a series of tests.  CT scans, bloodwork, shipped my pre and post-op pathology and prostate to Johns-Hopkins (Dr. Epstein) and be randomized by this coming Monday.   I had chosen to not decide this myself in hopes that I would dodge the bullets with faith. 

When my oncologist, who happens to be the report writer on this study, instilled that this is what he would do, I was finally resolved that I had done well.  That was until he called last Thursday.  He first told me that Dr. Epstein did not qualify me for the study.  As you can guess I expected worse news.  But God gives us another option - Hope.  in fact, it was on this call that I learned that keeping the faith would pay off.  Dr. Vogelzang went on that after extensive study of my pathology, that CoH may have in fact removed the cancer.  I did not qualify for the study since my PSA was now 0.0 AND the cancer was not behaving like the 4+3 but rather 3+4.  All signs indicated that I was more likely less than a 40% of return.  Dr. V reraised the possibility that radiation was prudent.  That now we could hold off on Eligard and Taxotere. 

I hope that one day we can look back on this as a sign of hope for all.  I extend my wishes to all here that you keep believing in the positive side of the fight of this disease.  I know I am not out of the woods, yet, but that rather I am moving on. 

God Bless to all,

Tony & Ruth

44 years old (for another month)

With new hope.

Post Edited (TC-LasVegas) : 5/13/2007 9:30:57 PM (GMT-6)

Posted 5/14/2007 2:22 AM (GMT 0)
Hey Tony and Ruth,

You limitless faith and positive attitude will surely carry you through. No matter what happens you two are my heroes...

Jim
Posted 5/14/2007 3:01 AM (GMT 0)

TonY:

Had been thinking of you and what your decision was.  Hope all continues well with you.  As Biker said - your wonderful positive attitude will take you thru this.

Best wishes.

Dutch

Posted 5/14/2007 3:15 AM (GMT 0)
Tony,
Hello, this is Kitt. I hope this prayer brings you some hope and I am here to support you in whatever you need. Please keep posting so I can get to know you better. I extend to you the hand of friendship.
I Am a Point of Light
I am a point of light within a greater Light.
I am a strand of loving energy within the stream of Love divine.
I am a point of sacrificial fire focused within the fiery Will of God.
And thus I stand.
I am a way by which men may achieve.
I am a source of strength, enabling them to stand.
I am a beam of light, shining upon their way.
And thus I stand.
And standing thus, revolve.
And tread this way the ways of men,
And know the ways of God.
And thus I stand.
~New Age
Posted 5/14/2007 3:16 AM (GMT 0)
Dear Tony & Ruth,   The sharing of your journey has had such a strong impact on so many of us.   Traveling this road with you has given us more knowledge ~ because you’ve shared each stepping-stone with us.   Thank you!!     As you move forward in your journey… we continue to be there with you.    Thank you for taking our hands…..    Here’s a   “ Special ~Special Hug ” for you and Ruth.   It is heartfelt from our hearts to your hearts.   In Friendship ~ Lee & Buddy     Peace, Love & Healing   BodyMind Communication & The Path to Self-Healing:   An Exploration Excerpt from Dr. Bernie S. Siegel   The Power of Hope   Perhaps more powerful than any visualization or other specific technique you can use to alter the inner environment of your body are feelings of hope and love.   I consider it my job as a doctor to give my patients both, because that’s what they need to be able to live.   Since I don’t know what the outcome will be for any individual, no matter what the pathology report says, I can in all honesty give everyone hope.   I offer the doctors in my audiences a standing bet of a year’s salary.   I will read a pathology report, and if they can guess the date of that person’s death within six months they get my salary, but if not I get theirs.   Even though they have a total of twelve months leeway, I’ve yet to find anyone willing to take me up on my offer.   When I challenge them, they say they can’t tell from a pathology report when a person will die.   Then how can they use path reports to sentence people, as so many of them regularly do?   You can’t tell the future from a pathology report, and anyone who says otherwise is wrong.   There are differences between probabilities and possibilities.   I used to sit in my office wondering why I was spending all my hours with people who had diseases they couldn’t get over.   But some of them did get over their diseases, and wrote me letters years later saying “Thank you for giving me the option to survive.   I did.”   So now it’s easy for me to pass that option on to others, people with AIDS, cancer, diabetes, heart disease, lupus, multiple sclerosis and amyotrophic lateral sclerosis.   It doesn’t matter what the disease is.   There’s always room for hope.   I’ m not going to die because of statistics.   I hope you won’t either.     Peace, Love & Healing     by    Dr. Bernie S. Siegel  
Posted 5/14/2007 3:33 AM (GMT 0)

Tony & Ruth,

Keep looking to your horizons.  Continue to both celebrate life and fight the good fight.

We of course are all here pulling for you.  Don't hesitate to call on us for support.

I personally look at sufferings I have experienced as a temporary job.  Not a pleasant job.  Not a job I understand.  Not a job I can quit.  However, this perspective helps me hold the crisis, pain, anxiety, depression, you-name-it - at bay  - while I rest in the arms of the God that loves me -personally. 

You will not just persevere.  You will thrive:

From Revelation of St. John,  Chapter 2  (NRSV)

7Let anyone who has an ear listen to what the Spirit is saying to the churches. To everyone who conquers, I will give permission to eat from the tree of life that is in the paradise of God.

17Let anyone who has an ear listen to what the Spirit is saying to the churches. To everyone who conquers I will give some of the hidden manna, and I will give a white stone, and on the white stone is written a new name that no one knows except the one who receives it.

The disease you fight does NOT know your name written in the Book of Life.

We will rise in the Father.  We will rise in the Son.  We will rise in the Spirit.

We will rise as one.

 

CCedar

Posted 5/14/2007 3:33 AM (GMT 0)
Hi Kitt,
Thank you for your faith and well wishes. I will read for your entries and also let you know I am a man of very positive beliefs.

And to you other responders...I missed you while I hibernated. I will stay closer and keep you updated. I will be at the radiologists office this week.

Thanks again to all at this site. You make things happen.

Tony
Posted 5/14/2007 12:35 PM (GMT 0)
That's great news Tony, I'm very happy for you. Looks like that RV of yours has allot more adventures in store

Cheers,
Joe
Posted 5/14/2007 3:21 PM (GMT 0)
Inspiring. Thank you. All the best to you all.

Posted 5/14/2007 4:43 PM (GMT 0)

Tony and Ruth,

It is great to see you back online again :) and with news full of hope and strength.

Look forward to travelling with you starting at this new hopeful point in your recovery.  Please keep us updated on your future treatments (as you are able) and how they go for you.

We will be thinking of you both!

Tanya (and Ken)

Posted 5/15/2007 1:20 AM (GMT 0)
Hi Tony: It's wonderful to hear that your PSA was ZEEEEEERO and that by all indications you are in the 60-percent chance of no-recurrence zone!!!!
Sounds like really good odds to me, my man.
Best to ya, as always.
Posted 5/15/2007 1:57 AM (GMT 0)
Tony,
Congratulations on your wonderful report! If any of us needed more proof that good medical care and a positive attitude can work miracles, you have provided it! Continue to stay well, and keep us updated!
Best,
Mike
Posted 5/15/2007 4:05 AM (GMT 0)
Tony - so happy to see you posting...and with such wonderful news! Sometimes decisions are too hard to make on our own, they just are. Your not deciding turned out to be a good decision, no? Couldn't happen to a nicer guy.

Peace to you & Ruth,
Susan
Posted 5/19/2007 4:44 AM (GMT 0)

First, you are a sweatheart Susan.   Top Notch. Don is a lucky man.

Second.  Unfortunately.

The first post in this thread was mistaken.  The good news is that I am no further distressed than before last Thursday.  Unfortunately when Dr. V called me he was unaware that his nurse had mistakenly posted my post-op PSA in a Pre-op field on the computer.  I am not going to "fire" my team, but, I am still a high risk patient.  My faith is unshaken because my new PSA is ...0.0.   I started my Eligard treatments with Casodex.   Enough is enough with decision making, I chose to dam the torpedoes and fire them.  Still a good attitude, still a positive mind.  My only setback here is mind set.  I grilled my oncologist on how this could happen.  He is P'd and fired the nurse.  In our situations at this site, there is no room for error.  That stated, I am doing well, and I am making progress. 

Thank you to all of you.  Please understand that my stage is not a perfect science.  The fired nurse was trying to help me.  i feel great tonight.  My commitment is unshaken.  Don't let a poor practice by a practitioner waver your convictions.  I am three days into my HT treatment.  Radiation begins next week.  Chemo is still a possibility but we won't seek it until the radiation is complete. 

Time to head to the mountains?

Tony

Posted 5/19/2007 5:25 AM (GMT 0)
Dear Tony

You inspire all of us with your continuing story and we are thankful that you are sharing it with us. It is so important to have faith, hope, courage and a postive spirit like you have, to face the great challenges of an advanced stage of PCa. You are always in my thoughts. I hope and pray that continuing PCa research will find new miracles to help you and others like you. Good luck with your radiation treatments. God Bless!

Dave
Posted 5/19/2007 12:00 PM (GMT 0)
Tony,

Okay - so here you are. Here we are. I have to tell you this - there are many here who look for you on this board, even though they may never post - they "view".
Here's why - you give us hope and really, what is this life worth if we don't have that? Your strong & determined mindset is a gift and thank God you choose to share that. It may sound simplistic but that mindset (actually, in your case it should be heartset) helps each and every one of us here. We come here for many reasons - some of us are lonely or maybe afraid. Some to learn or to impart what they know. Whatever the reasons, we need this place and you are a part of that. You & Ruth. I wish you weren't.

So in all selfishness, I thank you.

And yes, the mountains await you.

Susan
Posted 5/21/2007 3:46 AM (GMT 0)
Dear Tony,
The mountains are a wonderful place and I wish you peace and well being while you are there.
You are an inspiration to everyone and very much appreciated.
Gentle Hugs to you and Ruth.
Posted 5/21/2007 7:13 AM (GMT 0)
about the mountains...Er deserts.
I rode my dirt bike over 30 miles this morning in Death Valley National Monument. Uh, Yes I was there at 58 degrees 6:00am. And out at 9:30am at the ripe temp of 91. Any questions on how this place gets its name? Hurt my wrist by being stupid. LOL, I ache more than that tonight but let's leave that for a discussion about aging. Wonderful day. My friend and I rode through dry lakes, mountain terrain, and stupid sand strips...thus my sore wrist. I couldn't even play my guitars at full speed tonight. I love this part of living. Discovering new things in Life. I bought this motorcycle to better enjoy the places I like to go to. Well mission is being accomplished. Next week is Memorial Day weekend, and I will be in beautiful southern Utah at Duck Creek with the RV, Rhino, motorcycle, and sore wrist. I said it before...God's country! Limitless sites and a feeling of freedon I cannot compare to anything my travels have presented.

about the HT therapy,
Still no symptoms or side effects. I know I have to "maintain" this new way of life but I am not slowed after one week. This coming Friday I begin radiation. With a PSA of 0.0 I am looking forward to screwing up the other wrist...lol. I have read the other experienced HT kids threads and I am fully aware this will have an effect on my future mind set. All I can say is that mind set better like the outdoors.

about Kitt,
Thank you for being a willing party as moderator in a tough scenario. Your family's losses are tragic. For you to be willing to join us and guide us is truly remarkable. My preferred salvage in this experience is that I can provide hope to others. You have taken a stronger, more pro-active step to doing that. I don't have the time to do that for these great people at this site. I must rely on my doctors, my luck, and my faith for me be healthy and express my experience.

God Bless,

Tony
Posted 5/22/2007 3:47 AM (GMT 0)
Dear Tony
Thank you. I am a biker too but ride a street bike. My granddaughter ( 13 years old) and I are attending the Rolling Thunder Rally - ride for MIA and POWS of Vietnam which I now believe is in honor of all Vets. We are flying to Wahington DC Friday and the thunder will be loud as 1,000,000 bikers are expected.
I am in awe of your courage and you have my admiration and respect.........you go biker and enjoy your rides.
Ride free. Bless you and keep you safe from everything.
Posted 5/22/2007 4:15 AM (GMT 0)
Got my RV parked  with the price of gas over $3.00 and 100 gallons to fill up, but one of these days I'm going to chuck it and head across country.  For now I can live through you guys so go for it and let us hear about it. 

Post Edited (gtmriviera) : 5/22/2007 5:03:32 AM (GMT-6)

Posted 5/22/2007 3:51 PM (GMT 0)
Hi gtm, Kitt,
Being a member of this site is a good reason to get out and enjoy life. For me I stay positive and healthy. As far as the price of gas goes, pardon the pun, I didn't think I would see the day deisel was cheaper than regular. But its still under three bucks in Utah where I like to refill. Not a long jump from Vegas, just about two hours. Here in Vegas, the new East Los Angeles, the price is over 3.20 and climing like a homesick angel.

Kitt,
you sound like a Harley person. And that DC event sounds like a great ride. I was there with my wife and son in '99. We went to the Smithsonian. They have an awesome display of bikes there you should check out.

Tony
Posted 5/22/2007 4:47 PM (GMT 0)
Thanks Tony,
Yes I am a Harley person, an old Harley Mama............ I plan on taking Amy to as much as we can squeeze in.
You are so right, gas prices keep going up and up. Well gas rises..........so do the darn prices.
I love your positive attitude................hang on to it. I am here to support you.
Posted 5/22/2007 9:02 PM (GMT 0)
Tony, we have missed you too. You are doing an amazing job at fighting this ugly disease. You remind me alot of my dad. He, like you and Kurt, was diagnosised in his 40's. He didn't have the option for surgery because it had already spread to the lymph nodes throughout his body. He was told to go home and get his affairs in order. He was given 6 months to live. That was in 1992. He chose to fight. He gathered the best team of doctors in OK, and started hormones. 6 months came and passed. His doctors nurse used to joke with him that he was "the healthiest, sickest man she had ever met". He chose to live!! Like you! He read the book by Dr. Bernie Segal, "Peace, Love and Healing" as well as "Love, Medicine and Miracles". You would have never guessed that he was sick, minus the loss of hair with chemo. His doctors told him and us constantly that the goal was to keep him alive until a cure was found. He lived that belief. Unfortunately he didn't live until a cure could be found, but he did surpass all the statistics and lived 4 and a half years. I think he would have lived even longer had he not broken a hip in a freak accident. He gave up then. He quit answering calls from friends and stopped allowing visitors. He stopped going to the office. He lost the hope that he had had from the start, and nothing had changed about his cancer. No organs, just lymph nodes. If I knew then, what I know now, maybe something could have been done about that loss of hope. If he could have come here, and heard from people like you, who knows.
I am not trying to make you feel guilty about your absence, I have been absent for the most part also. I just wanted to let you know that I know you can beat this. You have what it takes! You have the love of a wonderful wife as well as the numerous friends you have made here. Keep the faith. You both are in our thoughts and prayers. Courtney
Posted 5/22/2007 11:47 PM (GMT 0)
Kitt, I think that I remember what you said your age was and you are an inspiration.  I have mentioned my secretary who had a double radical on 4/10.  She is 50 and a "biker chic".  Look out Big C, she's gonna kick your a**.  I guess that I'm a wimp.  I want my head inside of two tons of air conditioned steel, but I love the styling of bikes.  Bumper sticker-I brake for cruise-ins.
Posted 5/23/2007 12:40 AM (GMT 0)
  Courtney, Beautiful ~ Heartfelt posting to Tony & Ruth...  Your words are felt deeply.... by us..... :) Lee & Buddy Post edited to delete our signature line only (helping to save space on the server!) Post Edited (bluebird) : 7/19/2007 8:22:52 AM (GMT-6)
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