Sunday Afternoon Update

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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/7/2010 2:43 PM (GMT -6)   
Well, I am now 46 days out of my last surgery, that's a little over 6 weeks, hard to believe, seems like months to me.  In the morning, I can legally drive for the first time since Sept 23, longest no driving period of my adult life.  The home nurse came for the last time this past week, she has done great, but no longer need her services.  Also, the "at home" physical therapy" ended too this week.  They are bumping me up the list to get into the "at the hospital PT program", like I was on 10 years ago.  If all goes well, I will be starting a week from tommorw, and it will last a min. of 6 months, going several times a week.
 
I am still under a 5 lb weight limit until I see my uro again on 11/29.  Can pretty well eat what I want, appitite slowly increasing, though no where near pre-surgery levels.  Still not wanting sweets, most unusual, and can't handle the thought of any thing fried, spicy, or fast food.  We are going out of the way to eat lean and healthy.  No longer losing weight, slowly gaining a little back.
 
This has been quite a ride, this recovery, much slower and more intense than I could have imagined.  We placed our first monthly order for appliances, that's the two piece device I have to wear for life over my stoma in order to urinate.  So far, insurance is paying 100% of that too, as  the first order for one months supplies was a bit over $200.  Hard to believe.  But we have found a product that will last for 5 full days before needing to be replaced.  In the world of ostomies, that's a good range.
 
Major pain is no longer an issue.  Any residual pain is easily handled with Advil.  I still have little endurance, still need a cane to walk outdoors, and if I am standing or walking more than 10-15 minutes, it causes deep back aches, that only rest helps.
 
All in all, I am doing well.  Sure beats the world of hurt I was in for so long prior to this surgery.
 
David in SC

Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1211
   Posted 11/7/2010 3:00 PM (GMT -6)   
Hi David,
 
So glad to hear that you're doing well and that you finally have the pain situation under control. I wish you continued improvement as time goes on. I envy you a bit regarding your weight loss......I wish I could loose a few pounds :-).
All the best to you, my friend, in the years yet to come.
 
Mag

Born 1936
PSA 7.9, Gleason Score 3+4=7, 2 of 8 positive
open RP Nov 06, T3a, Gleasons 3+4=7, Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; at SRT Start=0.1, Salvage RT completed (33 days-66Gy) 19 Dec 08
PSA: in Jan 09 =.05, all tests to date (Jul 10) <.04

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/7/2010 3:03 PM (GMT -6)   
Thanks, Mag. It was a tough diet, to lose 41 lbs in about 40 days. Started to worry my doctor and the nurses involved. Was so glad to have turned the corner and now have gained back 3 lbs. Wouldn't reccomend losing weight this way, lol.
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

spottydog10
Regular Member


Date Joined Dec 2009
Total Posts : 348
   Posted 11/7/2010 3:08 PM (GMT -6)   
David,
It must be great to out of that world of constant pain.
I know there's a long way to go but your on that recovery road.
Best of luck
Mike

cooper360
Regular Member


Date Joined Jul 2010
Total Posts : 161
   Posted 11/7/2010 4:37 PM (GMT -6)   
I bet the pain being under control makes a big difference! Makes everything, even bad easier to cope with. No appetite for chocolate yet LOL! Seems like I remember reading that you were a chocoholic!!!!!!!!!! So glad your doing well! .........Cooper

BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 11/7/2010 4:40 PM (GMT -6)   
David it is so good to read you are on the mend. After such a trial to be mostly without pain must be great. As you get better still, and your strength picks up, your overall health will return and you'll get back to your former glory and then "watch out world ----- David is back". I've got plenty of excess weight I can donate if you like smilewinkgrin
Bill

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/7/2010 5:08 PM (GMT -6)   
thanks, guys
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

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3889
   Posted 11/7/2010 5:23 PM (GMT -6)   
That's great news Dave..You have been in Purgatory long enough..

Having been on narcotic pain meds for so long, it will take your body a while to recover and adjust from that withdrawal.. Your appetite slowly returning is a sign that process is well under way..The back pain too..After a long period on narcotics, you become super, super sensitive to pain and it takes a while for nerve responses to return to normal when those meds are removed..

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/7/2010 6:34 PM (GMT -6)   
Most of the appitite problem is because they cut out about a one foot section of my colon in order to make the conduit for the stoma, then, of course, they had to sew the colon back up. That is why I was not allowed to eat anything for nearly the first week after surgery, then only liquids the next 1 1/2 weeks. Then, in the middle of that, I had that terrible fever and a raging post surgery UTI. 2 weeks on strong antibiotics also made me not want to eat. Thus, all the sudden weight loss. I don't honestly think it had anything to do with the previous use of pain killers, but hey, Im not a doctor. The back aches, directly related to having major adombinal surgery, and losing so much muscle mass due to athropy after the surgery. That is what the PT is suppose to be helping me to do, is to build up strength and endurance again. My stomach muscles arent up to supporting all my upper torso weight at this time, thus, my back gives out easily.

When I compare this surgery to my open RP surgery of nearly two years ago, the prostate surgery was a breeze in the park in comparisom. I knew what I was getting into with this surgery, and it was really the only practical solution to the problem, but boy, did I ever grossly underestimate the recovery process. And like the docs and nurses have said, I had such a major surgery at a time when my body was so weak from all the former pain and the previous 7 surgeries. I am sure being 58 years old didnt help either, dont quite bounch back like I use too, lol
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

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 11/7/2010 6:35 PM (GMT -6)   
David: Just Great to know your are getting better. What a journey you have been on. Time to start gettting strong enough for a Louisiana visit in Arpil. Just keep thinking GFMPH :)

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
Only issue at this time is ED

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/7/2010 7:41 PM (GMT -6)   
thanks jeff, good talking to you the other day. still hoping to make your event in april, too far away to be positive, but should be plenty well before then. i know it will be a great event in advance

david
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

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 419
   Posted 11/7/2010 8:09 PM (GMT -6)   
David,
Perhaps time to change your HW name to Purgatory, Been There, Done That. tongue
 
Compared to where you where it must feel like heaven.
 
Carl

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 11/7/2010 8:17 PM (GMT -6)   
David,
All I will say is that was it was wonderful reading your Sunday update.
Michael

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/7/2010 8:22 PM (GMT -6)   
Carl,

No way to truly explain how it feels to be free of so much lingering, daily pain, to the levels I felt prior to this surgery. It's even hard mentally to switch from one mind set to the new one. I keep expecting something bad to happen, pain wise, but it doesn't. Make take a while to get some confidence back.

The purgatory names will stay, lol, as it has been used by me for years and years, and honestly never had anything to do with PC or my health

I still feel good about postponing my November PSA until February. I still want to fully recover the rest of my health, and to be able to enjoy the upcoming holidays without any extra worries. Whatever my PSA is doing in between, it will still be doing it, and it will still be there in February. Who knows, I may even be pleasantly surprised, and that 2011 will be a good year for me.

Hope you are still doing well on your end.

David in SC
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 : 7082
   Posted 11/7/2010 8:25 PM (GMT -6)   
David,
Remember that I am committed 110% to being at Jeff's for GFMPH weekend - if we can co-ordinate anything to make the trip work for you, I'm in.
My vacation time is already booked.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/7/2010 8:34 PM (GMT -6)   
thanks, michael, appreciate your thoughts. its great to report positive news, after nearly 2 years of reporting bad news all the time

142 - my daughter is a travel agent, and can hook me up big time, i would have to fly, as i dont do long road trips anymore. i would love to be there. told jeff, that my only consideration needed, is that i have to have a/c to sleep in that climate, even if i have to have a motel room at my expense. i can fly there in a little over an hour. hope i can make it, to meet some more brothers and to show my appreciation and support
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

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 419
   Posted 11/7/2010 8:34 PM (GMT -6)   
David,
Thanks, I am doing fine. It's interesting how we keep discovering new little things. I have been trying to get used to going into a stall to urinate when at work or traveling. Thought I had to drop trowl to use two hands activate the AUS and point Buford so he didn't blast all over everything....lol. Just this week I figured out that I can take him out just by unzipping normally at a urinal. Then, I push my hand down inside my pants and can grab my scrotum through the underware and activate the AUS. Gets me really back to normal.......LITTLE THINGS MEAN A LOT.
Probably more than you needed to know. But, since you have been on HW so long I am wondering if something this mundane and simple would be worth putting on a thread. Surely other guys have already figured this out. What do you think.
 
Of course, I was just kidding about the Purgatory thing......you must be Catholic! I have been praying for you but not with beads....Presbyterian tongue regardless, a name really sticks and we would have trouble knowing you by any other moniker.
Keep smiling!
 

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/7/2010 8:46 PM (GMT -6)   
tallguy,

IMO, the little things, the mundane, the details, are all important here at HW. The practical tips, the daily struggles, etc, mean more to me than the straight up "medical advice". I got good doctors for that part, though I love hearing what other people's doctors say and suggest.

For me, with an Urostomy (Stoma), I am having to learn all over. There is no sensation of urinating. The ureters from the kidneys empty constantly into the conduit (pipe) that was made from a piece of my colon, and the conduit brings it to the surface to the stoma. The stoma has no pain nerves, so you never feel anything. The urine goes into a plastic bag of sorts. When it gets 1/3 to 1/2 full, I go to the can. All I have to do is stand over the toliet as usual, and reach down and release the valve on the bag, and it empties fast. Sounds just like a normal guy peeing to be honest. When empty, you do have to remember to close the valve!

At night, since the bag can fill so fast, I simply hook up a standard catheter night bag, it snaps right on to the tap on the bag, and open the valve. Then the urine goes from the bag to the big bag, and I dont have to worry about the smaller bag overfilling and backing up.

It's all a learning process. The only trade off, I will never be able to wear brief style underwear again, as I need boxers to hold the device and bag in place. Not a big deal.

Your "device" sounds like a learning process too. But sounds like its a good solution for you.
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

Ger42
Regular Member


Date Joined Apr 2010
Total Posts : 189
   Posted 11/7/2010 8:48 PM (GMT -6)   
David good to read that you are doing better. I hope every one of your weekly reports is better than the last one.
Gerry
Age 68 weight 185 height 6'
Samples taken 4/19/2010 sent to Bostwick
3 out of 12 samples cancer
1) gleason score 3+3 involving 65%
2) gleason score 3+3 involving 65%
3) gleason score 3+3 involving 10%
PSA 3.5 Mar 19
PSA 2.5 Apr 4
Bone scan clean CT scan clean
Da Vinci 10/12/2010 DR Paul Kahn all nerves spared
Home 10/19/20
Cath out 10/22/2010
Prostate 56 gm. Gleason grade 3+4 = 7

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 419
   Posted 11/7/2010 8:52 PM (GMT -6)   
Interesting to hear your details. I remember back to when I had my "bed bag" that first week following RP. Best nights sleep I had in weeks since there was nothing to wake me up to urinate.
Good advice, I will post it to see if anyone else has tips and tricks with AUS.
66 year old male
PSA jumped 3 to 8 Jan 2008
pt2b NO Mx with a Gleason score 3+3=6.
DaVinci RP, 7/23/08. Tumor type: Acinar
size 5.5 cm x 5.7 cm weight: 77 gm.
Incontinence & ED. Dry nights , no control during day.
FUDS and cystourethroscopy testing 10/09.
24 hr pad wt. 219gm. AUA sympton index 13/35=moderate
Virtue sling surgery 2/3/10 NYU med center
Appeared to help but gradually returned to pre surgery condition.
Back to 3-4 pads/day.
Latest PSA 4/1/10 negative.
AMS 800 artificial urinary sphincter implanted 7/8/10 at U of MI.
AMS 800 activated 8/25/10 Dry for first time in 2 years.
Links to my journey posts:
http://www.healingwell.com/community/default.aspx?f=35&m=1847812
http://www.healingwell.com/community/default.aspx?f=35&m=1710681

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/7/2010 9:00 PM (GMT -6)   
thanks, gerry

yeah, tall guy, one plus, is i never ever have to worry about getting up at night to pee, not for the rest of my life. if i were ever on a long trip without good access to bathrooms, like a crowded air flight, etc, i would have to use a catheter leg bag, to connect my device bag to it so that it couldnt back up, but again, i was well use to wearing one of those for so long too. depending on how much liquid i drink, i usually have to empty every hour to hour and a half, but again, not going to complain about that part either
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

Jazzman1
Veteran Member


Date Joined Sep 2010
Total Posts : 1162
   Posted 11/7/2010 9:19 PM (GMT -6)   
Best post of the month, David. It's good to hear you're doing so well.

You seem to have a great perspective on where you are in your recovery vs. where you've been. Very healthy. Makes it hard for me to whine about my little puny aches and pains. You're my hero!
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

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/7/2010 10:27 PM (GMT -6)   
thanks, jazz, but each of us has their own battles, their own victories and losses, and even their own demons to fight
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 : 2461
   Posted 11/7/2010 11:08 PM (GMT -6)   
David,
I'm glad to hear that you are doing well without much pain. I've followed your journey from the time I joined HW and it has been a long journey indeed. I hope that finally you can concentrate on living your life without any more pain and surgeries.
Age: 67 at Dx on 12/30/08 PSA 3.8
2 cores out of 12 were positive Gleason (4+4)
Davinci surgery 2/9/09 Gleason 4+4 EPE,
Margins clear, nerve bundles removed
Prostate weighed 57 grams 10-20% involved
all PSA tests since (2, 5, 8, 11, 15, 18 months) undetectable
Latest PSA test (21 months) .005

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 11/8/2010 7:02 AM (GMT -6)   
David - just dropped in to say - congrats on feeling better and the wonderful postings - there is a lightness in the text and feeling in your words.
-we are so pleased for you -
-wishing you and Peggy all the best
hugs
BRONSON
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