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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/16/2010 9:35 PM (GMT -6)   
In one week, will be exactly 3 months ago that I underwent major surgery for the Urostomy.  I swear, it feels more like 6 months or more.  It's been a slow, exacting recovery.  Makes the 7 previous surgeries seem easy in contrast, including my open RP 25 months ago.  It been a heck of a 2 years, collectively.
 
Still in Physical Therapy Outpatient.  I go twice a week, but as of the  first of the year, will be going 3 times a week.  They still won't predict an end date, as my progress is much slower than either they or myself would like.  With the stoma still healing, ba
there are lots of things I still can't do.  So it kind of makes my exercises and stuff uneven.
 
After 3 months, I can barely lay on my left side for short periods of time, then it hurts too much.  No chance of me lying on my right side where the stoma is located.  So, and I hate this part, I still have to sleep lying flat on my back, something I have never done prior to this surgery.  I have to hook up a standard night catheter bag (lots of practice with that) to the bottom of the valve on the bag and wafer that is attached to the stoma.  At least I never have to get up at night to pee, but it eliminates any chance of changing position once I lay down to sleep.
 
In the morning, I close the valve, disconnect the big bag, and clean and drain it.  This will be my routine for life.  The bag I wear, I end up emptying at least once an hour for every hour I am up.  If you let it get too full, it will try to lift the wafer off your skin, and that's not a good thing, as you can spring a leak.
 
Still have pain, post surgery, but nothing that getting off my feet and taking Advil won't take care of.  Still haven't touched a single script pain pill in over 2 months.  As far as pain in my ex-bladder/bladder neck - pretty well non-existing.  I still have the somewhat painful phantom urgency pains, I swear I am going to explode, but there is no chance as nothing can enter or exit my bladder.  Totally disconnected.
 
Still dealing with the hip pain I described in another thread.  If it keeps up, will deal with it when I see my dr again in Feb.  Still taking a medical and PSA break at this time.
 
Still limited to lifting no more than 10 lbs, but that is hard to abide at times.  If I walk more than 10 minutes or so at the time, or stand up about the same length, still getting deep back aches, but that is still related to the surgery.
 
My mind is ready to go to town, but my body hasn't caught up yet.  Still hoping to make the LA HW Get-Together, but can't make any promises.
 
Doing the best I can, and hoping, despite not taking that last PSA test, that the number isn't creeping upward unawares to me.  I am curious, but not curious enough to break my testing break.  It will still be there in February.
 
David in SC

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3800
   Posted 12/16/2010 9:40 PM (GMT -6)   
>>My mind is ready to go to town, but my body hasn't caught up yet. <<
 
that's progress David!  i'm feeling better too.
 
ed
age: 55
PSA on 12/09: 6.8
no symptoms, no prostate enlargement
12/12 cores positive....gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10

Jazzman1
Veteran Member


Date Joined Sep 2010
Total Posts : 1160
   Posted 12/16/2010 9:54 PM (GMT -6)   
"My mind is ready to go to town, but my body hasn't caught up yet."

That sounds like progress to me too, David. Where the mind goes, the body generally follows. Hang in there. Given that you had the strength of spirit to get this far, I'm betting you'll get a whole lot better before too long.
Age 55
PSA: 8/09 2.69 -- 7/10 4.00 -- 8/10 4.11
--------------------------------------------------
Biopsy 8/10
Three of 14 cores positive: 10%, 60% & 80%
Stage T1C; Gleason 6
---------------------------------------------------------------
open radical prostatectomy at Cleveland Clinic 11/2/10
Post-surgical pathology: Gleason 7 (3+4)
Three positive margins; Stage T2c(+)
12/7/10 PSA: <.03

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 12/16/2010 10:27 PM (GMT -6)   
Hi David,

While progress may be slow --- it's progress, and like Jazzman I take it as another good sign that your mind is ready to go to town. As he so wisely observes, the body generally follows.

Good on you, friend,

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

clocknut
Veteran Member


Date Joined Sep 2010
Total Posts : 2667
   Posted 12/16/2010 10:30 PM (GMT -6)   
You've been through a lot, and you have a lot to deal with and adapt to.I guess it's inevitable that you'll have your share of good days and bad days.  Here's wishing you a new year with many, many more good days and continual healing. 

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/17/2010 12:54 AM (GMT -6)   
I spent 5 hours on Tuesday breaking down a 28 page contract for my ex-boss, closest I have been to working in I don't know how long now. It was good for my head, as I had to take it apart paragraph by paragraph, sentence by sentence, and remark on the small print. I was wore out when done, and couldn't wait to get home, but it felt good to do something useful for once
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 12/17/2010 3:45 AM (GMT -6)   
It's been a real tough journey David that is for sure. Your friends here have seen the highs (too few) and lows (too many) over the last two years and have cheered for you all the way. We all keep watching for each little improvement and are mightily pleased when we read of a step forward------it will be great when you are back in harness.
Bill

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 12/17/2010 4:01 AM (GMT -6)   
David, It does sound like progress, so slow but still progress. As the others have mentioned the mind seems to know that your getting stronger.

As for the GFMPH we are holding you spot and hoping that you will be able to make it. No presure just hoping. So many of the guys want to shake you hand.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
2 year PSA <0.1
Only issue at this time is ED but getting better

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 12/17/2010 5:00 AM (GMT -6)   
David, I was glad to read your update.  Your progress may seem slow but the important point is that there is progress.  As has been said before, your body has been through alot - and so has your mind.  Time is on your side, as are all your friends here at HW.
 
With Christmas just around the corner (where has the year gone!), I'd like to take this opportunity to wish you and your family - as well as everyone here - a wonderful holiday and a healthy, happy New Year.

TTaylor
Regular Member


Date Joined Nov 2010
Total Posts : 102
   Posted 12/17/2010 9:29 AM (GMT -6)   
David
You hang tuff. You are the Benchmark for this web site that helps wimps like me tolerate a little discomfort. Whether you realize it or not you are an inspiration to those of us that are taking this journey. You will get better and you will go to town.
Stay well and blessed
TTaylor
Age 67. Robotic prostatectomy 10/26/2010, due for RT in Janury 0f 2011. Eight of 12 lobes positive. Gleason Score 4+4=8, Margin envolvement was present with adipose tissue invasion and perineural invasion, glandular and stromal hyperplasia present,pT3 pNO and no evidence of metastatic adenocarcinoma.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/17/2010 10:39 AM (GMT -6)   
billy mac - been some really good friends made here, and you are one of them, been a hard path, but still kicking along

jeff- why dont you email me the specifics of the meet in LA, i cant remember any of it

sephie - thanks, haven't heard from you in a while, least i am not having any backward movements at this time, all forward, however slow. hope you and john have a good season too

taylor, thanks, but we each fight out own unique battles in the war against our collective enemy - PC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 12/17/2010 11:12 AM (GMT -6)   
David,
You are taking small steps forward which is a good thing. There is light at the end of the tunnel. Have a Merry Xmas and a Happy New Year.

wigged-out
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 12/17/2010 12:31 PM (GMT -6)   
David,

Keep on healing. Hopefully you are further along the other side of this. I wish you all the best now and for the holidays.

W-O

proscapt
Veteran Member


Date Joined Aug 2010
Total Posts : 644
   Posted 12/17/2010 2:21 PM (GMT -6)   
David -

Hang in there; it will get better as your body continues to heal. It may be slow but it's moving in the right direction! Your toughness and spirit are an inspiration to us all. Enjoy the holidays, and keep posting about your progress.

David

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/17/2010 4:33 PM (GMT -6)   
thank you guys, appreciate the support always, we are all in this PC thing together, for good or for bad
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 12/17/2010 8:03 PM (GMT -6)   
Happy to know you are making some progress. Reading a long contrat would wear me out. How is your weight? Have you gained back any of the weight you lost post surgery.
 
Age 48 at diagnosis
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
Robotic Surgery May 9, 2008 - houston, tx
Pathology report -gleason 8, clear margins
22 month  PSA <.04
continent at 10 weeks (no pads!)
ED is still an issue

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/17/2010 9:00 PM (GMT -6)   
Had gained back 12 out of 41 lost, but since lost 3-4 back again without trying
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6946
   Posted 12/18/2010 10:34 AM (GMT -6)   
David,
 
As always, progress is progress, so be thankful for every bit.
 
Hang in there. Mom sends her best.

mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 12/18/2010 9:17 PM (GMT -6)   
Hang in there buddy. Thinking of you always.

Mika
age at dx 54 now 58
psa at dx 4.3
got the bad news 1/29/07
open surgery Duke Medical Center 5-29-07
never more than 2 pads
ED is getting better
the shots work great, still can't give them to myself
three years of zero's
Retired again after 36 years February 1, 2010

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/18/2010 9:28 PM (GMT -6)   
thanks, 142, and a big hello to your mom

thanks mika, got to get back up your way soon
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

An38
Veteran Member


Date Joined Mar 2010
Total Posts : 1148
   Posted 12/19/2010 5:56 AM (GMT -6)   
Hi David,

Just the fact that you felt upto looking at contracts is a very positive thing.
Means that your mind is pushing towards recovery and your body will soon follow.

I know that it's felt like a long time but I am so pleased for you that you are no longer having to tolerate those unbearable bladder spasm and catheters getting blocked. It sounds to me that you certainly made the right decision.

Regards,
An

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted 12/19/2010 7:35 AM (GMT -6)   
David,
Sleeping in a fixed position when it's the position you're not used to being in is a real nuisance. Are you flat on your back or have you tried being propped up, either with several pillows or with a frame under the matress? Are you still sharing a bed or have you gone single. Or have you got two single mattresses on a double frame. (My wife's uncle with a stoma sleeps alone in a bed like a hospital bed.) A single bed can make it easier to switch the night bag to the other side if you can change sides even slightly.

Alf - still taking a break but also taking a break from taking a break as it's Sunday and too much snow to go out.
:-)

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/19/2010 9:07 AM (GMT -6)   
An, it was a tough, tough decision to make. Knowing that I would have a disfiguring major operation, that was not reversiable in any sense of the word. But that last year of pain, and knowing that no natural healing was taking place or ever going to take place - if anything - it would get worse, and knowing that due to the extent of the damage, I was no even eligible for any of the advanced (though much riskier) reconstructive surgeries, there was little choice in the end. Go this way, or suffer indefinitely. I was literally near the end of my physical and emotional rope (and that can be taken any way you want) and could not have continued much longer status quo.

Alf - mostly sleeping single by choice. plenty of dual-bed occupancy for recreational purposes. i have so many sleep issues outside of PC. have to sleep on my back, usually have too pillows, and have to worry that the stoma bag isnt getting twisted up from moving about and hoping the catheter bag tube (which runs underneath one of my legs) doesn't get twisted during the night. Its the part of this transformation I hate the most.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10
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