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My PCa has managed to get my attention once again - DANG IT

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Posted 2/21/2012 12:03 AM (GMT 0)
Most of the time I just plain don’t have time to have cancer. Since my diagnosis 2 plus years ago, just 3 days after my wife went into the hospital for 8 weeks, I have been her consummate care-giver. It has left me alone and I leave it alone. Sure I have a rising PSA, and that is following surgery, SRT and suspected MET radiation.

But my PCa has been slowly invading my thought processes for the last week.

In fact I had a nice conversation with a counselor at MD Anderson a few weeks ago about my dealings with PCa. I feel I have been both blessed and cursed in my dealings with PCa. I have been blessed in that I have never gone through many of the emotions that normally befall men with PCa diagnosis. My cancer just never seemed to be as bad or as involved as my wife’s. Ed was never a concern of mine because of my wife’s condition. My decisions as to how to treat it were flavored with my thoughts of dealing with it by whatever means gave me the least amount of downtime and recovery. My energies were needed elsewhere. And thankfully my PCa has not manifest itself so as to be debilitating or interfere with my role as care-giver.

The counselor and I agree that I HAVE JUST NEVER BEEN AFFORDED THE OPPORTUNITY TO HAVE CANCER. Yes it has been both a blessing and a curse.

But now it may be rearing its ugly head and trying to gain my attention. Tomorrow morning I am flying to DC for the next scan in my diagnostic clinical trial at the National Cancer Institute. The first thing they will do when I get there is take blood for a PSA test. The results will be back before I finish with the scans. This will be my first PSA test since last September, and at that time it was 9.64.

Honestly the thought of where my PSA might be right now scares me just a little. Part of me wants them to find it in some remote area that can be radiated and hopefully deal with it for a while. And part of me doesn’t want them to find any indication of it at all.

As I updated ya’ll earlier, Lynn has run out of treatment options for her cancer. We are just dealing with things on a day by day basis and trying to keep her comfortable and enjoy life to whatever degree we can. The big goal at this time is for she and I to make it to GFMPH Baton Rouge, in April. Any thing beyond that would be icing on the cake.

So it just bugs the hell out of me that right now my PCa is occupying so much of my daily thoughts processes.

So this is just a little vent, a little rant and a little update on where things are right now. I will update you folks on the outcome of the tests and scans when I get back home.

DAG NABBIT BUT PCA IS JUST A FARKIN’ PAIN IN THE ARSE.

Sonny
Posted 2/21/2012 12:26 AM (GMT 0)
Sonny -
- wishing you all the best with the scans and tests and whatever else they throw at you - I am sure if you don't like it, you'll throw it back ( maybe that is where your son's pitching arm came from) -

- the PCa may be taking a front seat for a while - and get you swearing like a good ole fashioned Warner Brothers cartoon - but it also gives you a break from dealing with Lynn's cancer -

- it may be a blessing in disguise when the $%&^#@PCa returns to the background in your life and you can focus again on Lynn -

- as a (former) caregiver, I know you have to have "me time" in order to refresh your batteries and that can come in a variety of forms -

-I know in my heart you will do well on both fronts - and even afford Lynn to be caregiver to you for a bit when you need it.

-wishing you both peace and contentment,
hugs
Bronson and Steve
...........
Posted 2/21/2012 12:27 AM (GMT 0)
my best wishes are with you Sonny - good luck with the scan tomorrow.
Posted 2/21/2012 1:23 AM (GMT 0)
That's a tough place to be in. I've been in treatment for the last few weeks and it really can consume all your mental energy. And I've been a caregiver before and know how much that can take out of you. That you have to deal with both at the same time is just beyond my ability to understand.

Venting/ranting is a good thing. Come here and do that whenever you need to.

Good luck with the scan.
Best,
Andrew
Posted 2/21/2012 1:25 AM (GMT 0)
Keeping my fingers crossed for you on the psa test. You know why.
Roger
Posted 2/21/2012 2:16 AM (GMT 0)
 

  Sonny, you are one tough cookie and have a remarkable "cut of the jib"

Your positive attitude is an inspiration to me.  Wish I had it.  Take care and I wish you "fair winds and following seas" with your journey.  The Old Sailor

Posted 2/21/2012 2:20 AM (GMT 0)
Always good to hear from you Sonny and as always a vent here and there can be helpful. In a lot of ways the PCa is no different than having a toothache, which i do have one at the moment. Everything evolves around that ache and when my daughter visited tonight I could only spend a few minutes talking with her before lying down. So I think at times like having our PSA drawn it can be consuming, especially when your plate is already full. Hope that some good news comes your way and in the meantime blessings to both you and Lynn.

Michael

Posted 2/21/2012 2:21 AM (GMT 0)
Sonny,

I don't consider your post a rant at all, just a reality check now that you are having to think about your PC, with the test ahead anll. Not sure where this number will come in for you. We are in similar situations, I don't think there's any question that you won't be facing another rise, but just like in my case, I hope the rise since the last test won't be too severe. For your sake, I hope I can stay in first place over your number, lol. If I were to make a simple guess, and that is all it is based on your climb, I would be expecting a PSA in the range of 12-14, but hoping I am dead wrong for your sake. For myself, I am expecting to hit or exceed the 20.x range by July at the latest. My doctor's hope is that the rapid climb wil reach a point of tapering off at some point, and hopefully that point will be before there is any evidence of mets.

At some point, and this is only stating the obvious, you will have to face other possible treatment decisions yourself in the near future, ones I already know that neither of us want to deal with. But I feel you are in good hands (doctor wise), and taking all the right steps as you face what lies ahead. It's really all any of us can do.

Wishing you the best, and hoping that somehow Lynn has at least stablized a bit since your last report on her condition. It's a tough ride with no easy answer, not on either of your seperate cancer fronts.

David in SC
Posted 2/21/2012 3:50 AM (GMT 0)
Yep, it doesn't go away.

This is a most wonderful lace to vent.

Good luck with the upcoming results!

Mel

Posted 2/21/2012 4:09 AM (GMT 0)
Sonny,

There's not much anyone can say at this point, but I wish you peace and all the power of that good grace that you seem to have that makes you steady in the midst of turmoil.

Best of luck with your tests in D.C. Keep looking forward to GFMPH and we'll look forward to seeing you there.

Best,

Jonathan
Posted 2/21/2012 10:53 AM (GMT 0)
Well it's 6am my time and I am off to the airport. Going to be a long day for sure. Plane leaves for DC at 7:30am and I arrive back here in Orlando at 10:30pm this evening.

Lynn's sister is due here any minute to stay with her until I get home. Sure is great to have a very supportive family.

Thank you all for your support and best wishes. Whatever the outcome of the day's tests, I still think "Every Day is A Bonus".

Ya'll have a great day,

Sonny
Posted 2/21/2012 2:04 PM (GMT 0)
Sonny,

Your PC journey and Lynne's battles are inspirations for the rest of us guys and gals and I do not take your OP as any kind of a rant as it is what it is.  Both of you are in my thoughts and prayers all the time and I as all the other guys and gals going to GFMPH in BR can not wait to meet your lovely Lynne.

Terry TWG

Posted 2/21/2012 4:53 PM (GMT 0)
All the best to you Sonny if that was a vent with what is on your table to deal with, you are a super gentlemen of epic purportion. Best to the new scanning method.
Posted 2/21/2012 8:38 PM (GMT 0)
I wish you the best Sonny. I've been following your case because I also have been dealing with my wife's condition as well as my PCa which seems to have come back.
Posted 2/21/2012 10:27 PM (GMT 0)
Well I am sitting here in the Baltimore airport waiting for my 8:15pm flight back to Orlando.

It has been a busy/long day so far. Plane to BWI then 1 hour shuttle to NIH. Got there just in time to have labs drawn and then run down to get the injection for the scan. Had to wait 1.5 hours for the injection to run its course then the scan. Time was kinda crunched because I needed to catch the 3:30pm shuttle back to the airport. The 6pm shuttle was not an option because I would have never made my reutrn flight on time.

The folks at NIH was most accomdating and did everything they could to make the timing work.

So I finished the scan with 15 minutes to get dressed and make it to the front door to catch the shuttle.

I said quick goodbyes, grabbed the letter that will get my radioactive butt through security and grabbed the PSA results.

YEEHAW!!! Read the results, and took the young lady giving them to me by the shoulders and planted a big kiss on her cheek.

I WAS MOST PLEASED TO SEE THAT MY PSA HAD ONLY RISEN TO 13.33.

I was fully expecting much higher, somewhere in the 15 - 20 range based on my trends.

Yea, I know 13.33 is high but to me, in my world, it is room to breathe until the scan results come back in a few days.

If the scan comes back clean it should be an interesting conversation with my ONCO. We may still be in the "If it ain't broke don't fix it" mentality. Just using some quick math it looks like my doubling time is slowing down and may be approaching a year or more.

"EVERY DAY IS A BONUS" and I mark today as a really good one so far.

Sonny
Posted 2/22/2012 1:00 AM (GMT 0)
Sonny,

Too bad there wasn't a prize on your PSA score, shucks, my guess was right in there with your number. One thing my onologist is hoping for, and perhaps you are seeing this in your own number, is that despite our rapid climbs to the high altitudes, that at some point the PSA will start to level off from the steep climbs. This is what he is hoping for me on my next reading in April.

We talked a lot about micromets on my last visit. He is still of the opinion, that once the cancer has escaped the prostate bed, the remaining cells could be in 1 location, or 5, or 50, or a hundred. He feels that the PSA readings are showing a cumlative total of course, but no one site is biggest enough to detect with any of the scans that are out there.

This is why he's not paritcually concerned about my exact number, which was 14.0 last time, because if its the results of mutiple sites, then no one of them will get picked up with the scan. This is why he told me, that he had men with post secondary treatment BCR PSA's as high as 100 with no evidence of mets. Why, and no some are tired of the expression, he doesn't treat a "number", he treats the overall condition of the patient. It is also why he's not eager to start me on HT or chemo at this point, though neither are ruled off the table if reality changes at some point.

That way, he says, I can preserve a better QOL for as long as possible, and hold off on any future advanced treatments until they are really needed.

Hope you get home safe. Sounds like Lynn was in safe hands while you were gone.

David in SC

P.S. This why in the end, my last special PET scan was canceled, and also why my doctor was not eager for me to undergo the tests that you have been doing in D.C. He just felt that at this time, it wouldnt show him anything useful, or change any treatment issues for me right now.
Posted 2/22/2012 1:28 AM (GMT 0)
Sonny - very pleased you like the numbers that came back
- here's to a safe trip home and being back with your Lynn.

knowing you two is a bonus,
gentle hugs to you both,
Bronson and Steve
Posted 2/22/2012 3:59 AM (GMT 0)
Sonny, you'll be landing at home right now, and soon back to your lovely Lynn. What a bonus to your day!

I share your joy with your PSA and look forward to hearing about the scan and what your onco has to say.

If anything could pry me out of God's Country here and down to GFMPH it would be the chance to meet you, Lynn, and so many of the wonderful people who will be there.

Sheldon AKA Sleepless
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