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A Strange Calm is Upon Me

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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 4/12/2011 6:29 AM (GMT -8)
Richard, thanks to taking the time to share your experience. You certainly have been through some tough issues yourself, and you are doing what you feel is right for you. This is how it should be. Don't worry about being "newer" here at HW, my policy to is to treat all PC brothers as my equals.

A point I don't seem to project correctly, is many feel I should jump on HT right now, with a skyrocketing PSA post savlage radiation. Sounds good on paper perhaps. But its not that simple. I have been through physical hell since late 2008, and only had a single 3 months period of time where nothing bad or painful was going on. And that was early in 2009. The rest of it has been terrible and traumatic at best.

I am also told, try HT, and if you don't like it you can quit it, nothing loss. I don't exactly agree to that line of thinking. I have already been badly "burned" twice doing what I was told to do with my failed primary and secondary treatment. I don't want to jump into HT, and have miserable side effects and even more emotional damage.

If I knew it would work, I would be more inclined, but no one can guarantee that. My track record for my entire medical history is that of complications, sensitivities to meds, bad side effects. This has been going on for 30 years of my life, not just my PC journey. This is my 4th bout in 11 years with a dangerous cancer.

This next statement is very personal and subjective, not critising anyone in particular, but I have been here a good while, certainly not an expert on any thing, just a "well tested PC pateint". But I see far more posted by men about wanting to talk about "quantity of life" as opposed to "quality of life".

Again, that part is personal, and it has to account for the sum total of what an individual values and how their lives have played out to that point in time.

As a nurse, my wife is dealing every single day, with patients (or more often, families of patients) fighting for the quantity part, while suffering endlessly with little if any quality of that life they have gained. Again, each person would view this differently.

If I went HT and it failed, then what would people say? Oh well, David did surgery - it failed, and put him through a year of hell, he did SRT - failed, and put him through even a worse year of physical pain and hell, and btw, he lost his bladder in the process, and he did HT - oh it failed, and he took on a new batch of side effects and issues.

This is what my gut tells me. My gut told me that SRT wasn't going to work, and that would produce terrible side effects (based on my previous major radiation treatments 11 years before).

If I were a betting man, you can see where I am coming from.

Thanks for writing, thanks for your support, and thanks for your care. I hope you can continue to hold off the monster in your own life, or at the least, control it.

David in SC
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James C.
Veteran Member
Joined : Aug 2007
Posts : 4464
Posted 4/12/2011 6:38 AM (GMT -8)
Richard, I hate to be the bad guy when you are offering advice, but I must draw your attention to the Forum rule concerning the discussion of , or suggestions to use pot, in any form, here. Sorry, but that's the rules of the owner.

Rule 2. No discussion of medical marijuana use.

www.healingwell.com/community/default.aspx?f=46&m=106997
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An38
Veteran Member
Joined : Mar 2010
Posts : 1170
Posted 4/12/2011 6:42 AM (GMT -8)
Hi David,

You know what you can deal with and what you can't.

I think that a decision on next steps will come naturally to you - some subconcious part of your brain is processing what people are saying to you here and their experiences, what your doctors have and will say to you, your family dynamics, what your body is saying to you, you hopes, your dreams, the interactions with the people you love and all of this will feed into that subconcious part of your brain and you will know what to do.

The day might come soon when you get up in the morning and HT will make sense. Or it may not make sense.

I am sure you will make the right decision for you.

An
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Old Sailor
Regular Member
Joined : Aug 2009
Posts : 214
Posted 4/12/2011 6:47 AM (GMT -8)

David, obviously those of us on HT have many and varied reactions to the HT.  Except for flushes, my journey which started last Nov has been rather uneventful.  PSA is now 0.11 & testosterone is 7. My Mayo doc already feels that if I can maintain those numbers, intermittent HT could begin at the year mark.  I had a bone density test to get a baseline (it was OK) and am going to have my dihydrotesterone tested this month.  Dr. Myers says this is very important for controlling pca.

Making a decision on future therapy is so personal and I support whatever course you choose. I have been asking PP to give you strength and help you to be at peace.

The Old Sailor 

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Sancarlos
Regular Member
Joined : Feb 2010
Posts : 242
Posted 4/12/2011 8:01 AM (GMT -8)
David,

Based on your history it is not hard to understand your fears, and your pessimism about HT. However, the fact of the matter is that you will never known if HT can help you unless you give it a try. And you also won't know how it impacts your quality of life unless you try it. As Old Sailor points out, there are many and varied reactions to HT but for some of us the side effects are not all that serious.

Interestingly, I find myself somewhat fearful of what will happen when I go off HT, which will be later this year. At this point I have no way of knowing whether my low PSA is due to eradication of the PCa or that it is just dormant with HT, so the months and years after going off HT will be very anxious ones for me. However, whatever happens down the line I will know that the decision I made to stay on HT for a couple of years was consistent with the best medical advice out there.

Sancarlos
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compiler
Veteran Member
Joined : Nov 2009
Posts : 7699
Posted 4/12/2011 8:14 AM (GMT -8)
tHE only consistent thing will be our anxiety.

(Upcoming PSA tests, new drugs/tx/SEs).

Mel

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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 4/12/2011 3:40 PM (GMT -8)
AN, you are exactly right.

sailor, thank you my friend, and for PP's help, I believe in him

sancarlos, i always appreciate you input and insight on the subject, consider it under advisement

mel, such is the fun part of any cancer event
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compiler
Veteran Member
Joined : Nov 2009
Posts : 7699
Posted 4/12/2011 6:27 PM (GMT -8)
Yeah, David, are we having FUN yet?

Mel

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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 4/12/2011 7:38 PM (GMT -8)
Cancers have been a steady part of my life since 1997, it is getting a bit old
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Aimzee
Veteran Member
Joined : May 2010
Posts : 1413
Posted 5/7/2011 12:39 AM (GMT -8)
Hello David,  how have you been?  I don't see any recent activity on this thread and I am worried.  I hope you are still having a sense of calm as you wait to make some important decisions.

You are in our thoughts and prayers.

Best wishes,

Aimzee

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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 5/7/2011 6:25 AM (GMT -8)
thanks for asking, aimzee

holding my own.

my next psa test is in 24 days, and i have no anixety about it, or waiting for it. just want to get it over with and meet again with my uro the following monday.

i start my new oncology rehab this coming monday. 2 days a week at first, then they will build me up to 3 times.

will be seeing a higher level oncologist after i meet with my uro, to figure out where i am at, and what to do next.

in the past month, i have had a big downturn (if that is even possible), and my chronic fatigue has become more intense, getting harder and harder to get anything accomplished.

that's about it for now

david in sc
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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 5/7/2011 6:51 AM (GMT -8)
Hope, that is a fair question, never been asked that here before.

Bitter? Never. Disapointed? Yes.

I could explain better if we were allowed to discuss the "R" topic, but we cant. Let's just say, in the big picture view of life, everything is for a reason.

I have been dealing with major medical events since I was 28 years, and like an infatible punching bag, keep bouncing back up. It either means I am stubborn, or I am stupid, lol.

I believe that the major events in my life, good or bad, are out there like fate, or pre-destined. So its best to roll with the punches and try to make the best of it.

With this Prostate Cancer, when it first came up (shows you how dumb I was 2 1/2 years ago), I simply thought ,oh boy, cancer for the 4th time. I would have my surgery, heal up, and that would be that.

Never dreamed that I would still be disabled and have gone through all that I have, and still not able to stop the cancer.

But bitter, nope, not even in my deepest private thoughts. I am living the cards I have been dealt, that's all, nothing magical about that.

It hasn't been easy, and its involved a lot of pain, but I am still here. Being surrounded by a loving and caring family is my greatest weapon, and will always be thankful for that.

Having such a dedicated and caring Uro and GP also helps me through the dark times.

Hope that answers your question.


David in SC
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davidg
Veteran Member
Joined : Feb 2011
Posts : 4093
Posted 5/7/2011 10:20 AM (GMT -8)
How about sad? That's what I think this disease is, sadness. What we all go through is sad. It doesn't have to define us, but it is heart breaking.
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Aimzee
Veteran Member
Joined : May 2010
Posts : 1413
Posted 5/20/2011 3:07 AM (GMT -8)
David, some people start to feel just a little bit better when the weather is warmer and the sun is shining.  Over here, we have had rain 36 out of 49 days.  No, not the bad stuff like in the South, but bad enough to interfer with some walking plans.

My husband has some sad days like DavidG mentions, but it passes.  He would like to go back to 2009 when cancer was not known and life seemed a bit better.  He did not go with the pump purchase yet.  There are other problems to deal with first.

Religion may not be an allowed topic of discussion, but your spirituality is apparent to all.  We wish you the best with your PSA test.

Best wishes always,

Aimzee

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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 5/20/2011 5:11 AM (GMT -8)
Aimzee,

By nature, I come unglue if there are even more than 2 completely cloudy days in a row. Couldn't handle what you described, lol.

But I was that way pre-cancer.

As an update, still calm about my situation. Be content in whatever state you are in. I have tried to live my life to that "verse". I run pretty even most all of the time. I don't generally have "highs" or "lows", and I adjust quickly to any new realities in my life, and I think that helps keep me on an even keel.

Still hoping for the best, for your husband, and you.

David


Yes, I am a person of deep faith, but I am very tolerant to all religions and to those that choose none.
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ejc
New Member
Joined : May 2011
Posts : 11
Posted 5/20/2011 6:48 AM (GMT -8)
Although I am new to this I have read many of the prior postings to try to gain some insight as to what to expect.
You have provided much help to aid & 'calm' many others.
I find it inspiring that you have found some measure of peace.

As for me, it has not even been a full year that I have been dealing with this but at the advice of my spouse I have
found some measure of calmness with her advice - You have no control over this situation for better or worse
so why make your life worse as you proceed. Make your best decision at the time and wait to see how it turns out.
You did not do this to yourself & you can not fix it.
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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 5/20/2011 9:41 AM (GMT -8)
good advice, ejc, thanks
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mvesr
Veteran Member
Joined : Apr 2007
Posts : 823
Posted 5/21/2011 11:18 AM (GMT -8)

David

We are all with you.  Hang in there.  Sorry we did not make it to Pickens last weekend.  My wife and I were both under the weather.  We will try it again.

Mika

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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 5/21/2011 2:40 PM (GMT -8)
thanks, mika,

it happened that last weekend i was in a lot of pain and not doing that great, perhaps next time
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compiler
Veteran Member
Joined : Nov 2009
Posts : 7699
Posted 5/21/2011 2:58 PM (GMT -8)
David:

When is the big consultation day?

Is it a one-day general consultation and then they make a follow-up appointment with someone or will you see a specialist at the first consultation?

By the way, regarding the subject title, perhaps it is something you ate?

Mel

P.S.: <G>

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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 5/21/2011 3:47 PM (GMT -8)
It's a 3 hour consultation and evaluation, then will be assigned the best qualified of there oncology staff, then of course, a follow up visit with that oncologist. It's next Thursday. Then my PSA on May 31, then my Uro on June 5th.

Ate what?

David
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compiler
Veteran Member
Joined : Nov 2009
Posts : 7699
Posted 5/21/2011 5:50 PM (GMT -8)
Good luck.

Sounds like the second meeting will be the big one (you'll then have your PSA, I imagine).

I'll be interested in hearing what you learn!!

Ate what? Oh... valium?

Mel

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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 5/21/2011 6:35 PM (GMT -8)
never had valium
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compiler
Veteran Member
Joined : Nov 2009
Posts : 7699
Posted 5/21/2011 8:22 PM (GMT -8)
Never mind, David. Just one of my weird jokes.

Sigh.....

Mel

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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 5/22/2011 6:30 AM (GMT -8)
sorry mel, you cant get anywhere with anyone that takes things literal all the time.
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