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A Strange Calm is Upon Me

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Posted 4/8/2011 8:56 PM (GMT 0)
sephie, we are still planning a NYC trip, perhaps early to mid fall this year, definitely would want to contact you.

ziggy, your idea is truly great, but as a very busy nurse in an understaffed facility, there's no way she's getting another full week vacation any time soon, the next time, we are hoping to do the san francisco trip that is now 37 years overdue

wife and mother, i simply dont get your post, could you say it differently, not sure if you fussing at me or complimenting me, I tend to take all things literally. perhaps you could re-phrase what you said.

david
Posted 4/8/2011 10:34 PM (GMT 0)
David:

You do understand that by "act fast" I am merely talking about consulting with an expert. I am NOT talking about starting HT or even something else.

You need to know your options and not just from your reading and talking to folks here.

Once you know your options, then you can make decisions. If your only option is HT (and that may well be the case), and if the gray area is to start HT now or wait until your PSA gets to 10 or 20 (and that may well be the case), then you can act accordingly and assuming you decide not to start now (which is clearly the case), then you can wait.

Anyway, I understand your reticence and I understand that you are absolutely convinced that ADT will be horrendous as far as SE go. I understand that also, based on your track record. But, again, you also know you can stop ADT. I suspect deep down you are convinced that yes you can stop ADT but will the miserable SE abate. (Am I correct in that?). I know your experience has been that the SE seem to continue forever.

David, good luck to you whatever you do. Perhaps I've been too presumptuous expressing my opinions. Ultimately, your opinion/decision is the only one that counts.

Just a thought: I am on some other PC groups. Would you like me to post your situation (just a real brief summary) pointing out your reluctance to do HT and asking if there is any alternatives? I suspect there are but the SE of those might be at least as bad as HT. But I don't know. Let me know; maybe there will be a new idea generated.

Mel

Posted 4/8/2011 10:42 PM (GMT 0)
Huh?

wifeandmother said...
What are we supposed to do, jump off a cliff?
Be strong for others if not for yourself at this time.
Have courage. The 6 Virtues and Strengths will help alot.

Posted 4/9/2011 1:27 AM (GMT 0)
Sephie, lol, that's what I said, I totally don't understand that post, I hope she meant well, but who knows? Are the 6 Virtues and Strengths some new supplement I don't know about?
Posted 4/9/2011 1:31 AM (GMT 0)
Mel,

I will pass on your kind offer to pass my story to another board. It took me a long time to even post my epic on the Yana site. I would rather it not be somewhere else, I am very faithful to HW.

I am not even inclined to rush to a medical oncologist, I know I need to, but don't feel any burning rush to do it. There's even a lot of factors going into that decision. And no, I am not only getting advice from here at HW, I hope you didn't really believe that.

Your opinions are welcomed and respected, the presumptions you make sometime in my personal thinking aren't, hope that makes sense.

David
Posted 4/9/2011 2:48 AM (GMT 0)
virtues and strengths link

cedars.hku.hk/cope/0708/a/virtues.html

www.pursuit-of-happiness.org/history-of-happiness/martin-seligman/seligman-on-happiness/

Post Edited (tatt2man) : 4/8/2011 8:55:05 PM (GMT-6)

Posted 4/9/2011 2:56 AM (GMT 0)
Interesting links, Bronson, thanks for sharing. Never saw them before spelled out like that
Posted 4/9/2011 3:01 AM (GMT 0)
Hey David, certainly no problem from me.

It's hard enough figuring out what I think sometimes.

Anyway, you probably know the gist of what I'm going to say when you see my name!

I'm sure you'll consider all opinions expressed here and elsewhere and eventually decide on a course of action (I consider no action as a course of action).

Good luck. Thanks for sharing your journey. That is so helpful.

Mel

Posted 4/9/2011 9:45 AM (GMT 0)

David, what a warm exchange between you and Sephie.  She seems to know you well.  What wise words.  My husband and I wish you the best in your calmness and in your decision making.  God bless you.

Jack, sending my blessings for your wife and her continued calmness.  Such strength I can only admire

Susan, your post brought tears to my eyes.  Truly sharing the last year, months, days of our lives with our loved ones is a blessing.  Jane will always have those memories.  How touching her story is. Thank you.

Bronson, thank you for the quote from Rose Kennedy.

Best regards and peace,

Aimzee

Posted 4/9/2011 1:56 PM (GMT 0)
Aimzee,

Sephie has a special place in my heart. She was the first woman poster at HW that I ever met, and I feel like I know her and her husband John at the personal level, though we haven't yet met in person.

She has a loving, caring heart, and very balanced views on PC subjects, and is always fair. That goes a long way with me.

David in SC

Post Edited (Purgatory) : 4/9/2011 2:49:33 PM (GMT-6)

Posted 4/9/2011 4:14 PM (GMT 0)
David,

I believe your calmness comes from you knowing how hard you have fought the battle and knowing, at this point, exactly where you stand. Only you can judge how much there is left "in reserve" to continue. After having read a lot of your posts for over a year, I believe you will make the right decision after careful thought and I support you either way.

And just to be clear, if you decide to do nothing, that is in NO WAY "giving up"...it is having the courage to face the reality as you know it.

Regards,

Joe
Posted 4/9/2011 8:54 PM (GMT 0)
Thank you, Joe, that was a pretty good understanding of where I am at, and how I feel.

David
Posted 4/10/2011 4:42 AM (GMT 0)
Hi David,

I have not posted much in the last couple of weeks and I am so sorry to hear of your PSA numbers. It is simply not right that you have had to go through so much and then you get a runaway PSA.

I am happy that you are finding this sense of calm, it will help you make good decisions about what to do next.

I wish you the very best, I will keep you in my thoughts.

Regards,
An
Posted 4/10/2011 5:50 AM (GMT 0)
Thank you, An

It's a strange sense of calm. It is not denialism in any shape or form as some might suppose. It's not foolishness on my part, I am all too aware of the potentially dangerous situation I am finding myself in. I have always had the ability to adapt and adjust to new realities in short order. My sense of logic, though flawed in other people's eyes sometimes, is pretty black and white to me.

When I had the original surgery, there was all the suspense after, watching a rising PSA score until my BCR was reached, the SRT decision was stressful, the complications terrible and its aftermath, and then after a tiny break, just a few months, the suspense of watching it climb was upon me.

Even though my last 2 readings have been drastic and shocking, there's no more supsense to any of this journey. My curative cards are gone, they didn't work. It's only logical and fitting that my PSA will continue to rise and rise, until and if I submit to a non-curative approach to slow down things.

This is where the calmness comes in. Since there is no more hope of a cure for me, the suspense part is over with. I only wish my two curative attempts hadn't come with such a high price of side effects, suffering and pain. That is the part that I am not happy with.

Without bringing my personal religion into the equation, out of respect for forum rules, in the bigger picture of the events in my life, including my future, I am ok with things, and that's another aspect of my calmness.

I am not one that has ever been a panic person, I tend to take things in stride, and as mentioned above, I adapt fast to changing situations. When I was able to work, I had complex jobs, with lots of variables, lots of fiscal responsibility, and had to make rapid large money decisions on a daily basis without the luxury of having loads of time to make decisions. This is also a factor in how I feel and think.

This may be hard for some to believe, and its not an idle boast on my part, not at all, but I no longer fear what is happening to me. Its obviously meant to be, and I will continue to accept this reality for me ,as I have all other things in my life.

Thanks for your care and support, hope things are well on your end.

David in SC
Posted 4/10/2011 8:40 AM (GMT 0)
you are fighting the good fight- my prayers go with you.
Posted 4/10/2011 9:51 AM (GMT 0)
David,
I can accept your feeling of calmness as I feel the same way. My last curative card is gone too, and my next step is HT. PSA rises sharply or even mets -- no problem, I just start HT sooner.

I know and accept my ultimate fate -- the only uncertainties are when and how, and this is little different from the way it has always been. In the meantime, I will have fun :-)
Posted 4/10/2011 2:13 PM (GMT 0)
thank you, anxiety

piano, you said that very well, its exactly how i feel.
Posted 4/10/2011 9:31 PM (GMT 0)
You are going to love NYC, I was raised in R.I. and visited a n uncle in Queens a lot. Didn't realy like it then. We were there in oct of 2010 stayed in upper west side had such a great time we are doing it again this jun after visiting son in Chapel Hill. Go to paley tv musuem. you get a computer station and look up clips from all the early tv shows . I really like the Gene Autry show, quite the gentleman that one,. Good luck.. Ps do the HT but wait for awhile. Im with you othr than clinical trial, what else do you have and by that I still feel you can live a long time with Qol getting better as you adapt to the new reality. It s not over David, now if I could only get you to believe that. It aint easy , just build up on that calm , use the unused part of your brain. Dont ask me how. I was hoping you will tell me. Good luck, renew your mind, my Bruddah , you know how, that I know.
Posted 4/11/2011 12:35 AM (GMT 0)
Aimzee, thanks for the kind words for my wife.   Much appreciated.

David, I admire your calm.   I still think it is the right time to consult with Snuffy Meyers.   A visit would make a nice day trip and he may have some great methods that would not add to the problems.   I think of Dr Fred Lee and all he has contributed since he was given a terminal dx many years ago.   He has been on emcyt for much of that time.     My med-onc says that emcyt can be very effective as it has with Dr Lee.   While you are calm would be a great time to go kick the tires with a great oncologist.

Best regards

Posted 4/11/2011 2:00 AM (GMT 0)
JNF-- that's good advice, to see a medical oncologist when you're calm.

David -- are you going to NYC?? I grew up there (Brooklyn). We enjoy it much more when we visit. Growing up we were poor and I never got to do much. Now we go every 3-5 years and see some Broadway shows and enjoy some wonderful restaurants. If you have any questions, just send me an email.

Mel

Posted 4/11/2011 2:25 AM (GMT 0)
Mel, I lived in NYC from 3 months to 6 months old, other than driving through it, we've never been there as adults. Sephie has kindly offered on many occasions to host us if my wife and I get to come visit the Big Apple.

If we go, it wouldn't be medical related, it would be a vacation type trip. So right now, its wishful thinking on my end, but possibly we might be able to pull it off this fall. We can fly non-stop from GSP, and if I were a glutton for punishment, could even take the Amtrak and wake up there in the morning.

David
Posted 4/11/2011 2:46 AM (GMT 0)

Good. Hope you get a chance to do it.

Hey, maybe you're team will be playing the Yankees or the Mets!!

I can recommend a few restaurants, but I guess Sephie will have all of that covered.

If you are ever in Michigan...

Mel

Posted 4/11/2011 4:22 AM (GMT 0)
as far as michigan, only been to there once, on biz to detroit of course. remember having some amazing cherry pie once from some rare orchard in far northern part of your state.
Posted 4/11/2011 12:34 PM (GMT 0)
Probably Traverse City, a fantastic resort area and the "cherry capitol."

Mel

Posted 4/12/2011 6:54 AM (GMT 0)
David
As a relative newcomer to this forum I can't help but notice what you have given to all of us and now you face a most difficult decision. First of all I want to thank you for being there for us. Secondly I have no idea what is best for another human to do in their lives. I can only offer my small experience and my hope for you and all of us. I have been on ADT not knowing if the disease was outside the prostate. I just got seeds so I am very early in this process. There was some suffering for me about 6 weeks into Lupron as I had crying spells and extreme oversensitivity to people but I also found ways to mitigate that-- exercise which made me feel much better for several hours afterwards. I could of used more support from people but by the time I couldnt explain to people what was happening and how to help. Overall because there was no sign of PC outside the prostate I made the decision to stop Lupron because it was not worth the potential benefit (Strum thought I could stay on for a year and have no other treatment possibly) and I had the option of seeds.

But if I had to do ADT again I would (1) line up an intense support system around me from people in my family and city who knew what I might be going through and would be there to support me (2) begin a 6 days a week exercise program that my support system of people would help me stick with (3) use thc in chocolate at very low doses to stop the malaise and help with sleep. I figure I would do that for a year with psa down below .05 and then possibly try super high dose testosterone a la Leibowicz and then cycle back on ADT if I had to. i would feel fabulous on the testosterone for as long as PSA holds which for 30% of guys is long term but most will at some point go back on ADT. The testosterone would also protect me from some of the long term side effects of ADT bone loss, etc. In the meantime years have gone by and there has been more time for treatments to show up.

But then that is me and I am not you. I have not suffered as you have and I do not have your experience with the disease.

So let me end by again saying thank you and know that you will be supported in whatever decision you make.
Richard


Gl 7 3+4 ADT 4 months PSA after ADT .04 Prostate volume fell from 48 cc to 19 cc Pal 103 Seeds Grimm Seattle March 30, 2011
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