The Pad Diaries
Comments
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Hang in thereTrew said:The Gap Widens
July 18, 2010
I can go all day long with no urge to urinate. Only at night when I am laying do do i get an urge that wakes me up 1- 6 times a night. 4- 5 is about average.
Sunday afternoon.
I am moving closer to my Ann Arbor/UM appointment. I have a sense again that my life is agian changing, moving me furthr and further from my pre-cancer days.
Today for the first time I reseached penile implants- what they look like, type of devises available and acutal video of what the effects of one inside a man.
I think I am on my way to another crash and burn evening. I am not handling all the changes that have come since a simple PSA test in late November or 2008.
I think I am just going to go take a Xanax and go to my room and see if I can sleep this off.
Before surgery everything worked so well. Its enough to make a grown man cry.
The 18th seemed like a better day for you so hang onto that one and better days are coming, try to realize that things are going to move forward when you get to your appointment. You have waited so long now and handled everything that came along. Only a few more days, I know you can do it. I can only hope that if I encounter setbacks, that I will be half as strong as you. Hang in there man.
Ed0 -
the gap widensTrew said:The Gap Widens
July 18, 2010
I can go all day long with no urge to urinate. Only at night when I am laying do do i get an urge that wakes me up 1- 6 times a night. 4- 5 is about average.
Sunday afternoon.
I am moving closer to my Ann Arbor/UM appointment. I have a sense again that my life is agian changing, moving me furthr and further from my pre-cancer days.
Today for the first time I reseached penile implants- what they look like, type of devises available and acutal video of what the effects of one inside a man.
I think I am on my way to another crash and burn evening. I am not handling all the changes that have come since a simple PSA test in late November or 2008.
I think I am just going to go take a Xanax and go to my room and see if I can sleep this off.
Before surgery everything worked so well. Its enough to make a grown man cry.
Go, guy!! Have a good cry if you need it. That's what it's for. John in Seattle0 -
the gap widensTrew said:The Gap Widens
July 18, 2010
I can go all day long with no urge to urinate. Only at night when I am laying do do i get an urge that wakes me up 1- 6 times a night. 4- 5 is about average.
Sunday afternoon.
I am moving closer to my Ann Arbor/UM appointment. I have a sense again that my life is agian changing, moving me furthr and further from my pre-cancer days.
Today for the first time I reseached penile implants- what they look like, type of devises available and acutal video of what the effects of one inside a man.
I think I am on my way to another crash and burn evening. I am not handling all the changes that have come since a simple PSA test in late November or 2008.
I think I am just going to go take a Xanax and go to my room and see if I can sleep this off.
Before surgery everything worked so well. Its enough to make a grown man cry.
Go, guy!! Have a good cry if you need it. That's what it's for. John in Seattle0 -
Hey Trew: I'm back!Trew said:The Gap Widens
July 18, 2010
I can go all day long with no urge to urinate. Only at night when I am laying do do i get an urge that wakes me up 1- 6 times a night. 4- 5 is about average.
Sunday afternoon.
I am moving closer to my Ann Arbor/UM appointment. I have a sense again that my life is agian changing, moving me furthr and further from my pre-cancer days.
Today for the first time I reseached penile implants- what they look like, type of devises available and acutal video of what the effects of one inside a man.
I think I am on my way to another crash and burn evening. I am not handling all the changes that have come since a simple PSA test in late November or 2008.
I think I am just going to go take a Xanax and go to my room and see if I can sleep this off.
Before surgery everything worked so well. Its enough to make a grown man cry.
Trew: I'm back! Back from my 8,000+ mile motorcycle trip across the country. I got along fine with my AUS. The AUS took me along Route 66, the Grand Canyon, Zion NP, the 120 degree heat of Death Valley, Yosemite, Redwoods NP, the snow at Crater Lake NP, through Gawd-awful construction zones that beat up on my bike's suspension, and made it possible for me to climb a volcano's cinder cone at Craters of the Moon NP, visit a railroad museum with my son in California and so on. When I started this fight with cancer (both prostate and then bladder), I knew I was fighting for my life. I felt all along I would win, but I knew I would be injured badly. The incontinence and ED are the prices I paid for victory over death. Thankfully, my AUS has helped me resolve about 98% of the incontinence issue. I still struggle with the ED. I (we) have had to make certain adaptations, but my wife has been wonderful. Levitra has been of some help, but not much. I'm going to try MUSE in a few days and may work up the courage next week to ask my doctor about injections. The ED is more important to me than it is my wife.0 -
tomSkid Row Tom said:Hey Trew: I'm back!
Trew: I'm back! Back from my 8,000+ mile motorcycle trip across the country. I got along fine with my AUS. The AUS took me along Route 66, the Grand Canyon, Zion NP, the 120 degree heat of Death Valley, Yosemite, Redwoods NP, the snow at Crater Lake NP, through Gawd-awful construction zones that beat up on my bike's suspension, and made it possible for me to climb a volcano's cinder cone at Craters of the Moon NP, visit a railroad museum with my son in California and so on. When I started this fight with cancer (both prostate and then bladder), I knew I was fighting for my life. I felt all along I would win, but I knew I would be injured badly. The incontinence and ED are the prices I paid for victory over death. Thankfully, my AUS has helped me resolve about 98% of the incontinence issue. I still struggle with the ED. I (we) have had to make certain adaptations, but my wife has been wonderful. Levitra has been of some help, but not much. I'm going to try MUSE in a few days and may work up the courage next week to ask my doctor about injections. The ED is more important to me than it is my wife.
man that trip sounds wonderful, i am glad for you its nice to get away. what rr museum did you go to, i am a rr buff and love those places. goodluck griff0 -
Traveling with my AUSgriff 1 said:tom
man that trip sounds wonderful, i am glad for you its nice to get away. what rr museum did you go to, i am a rr buff and love those places. goodluck griff
I went to the California State Railroad Museum in Sacramento. After 10 days on the road, I took the day off (Saturday) in Tracy, CA. My son lives in Palo Alto, so he drove over, picked me up, and we drove 50 miles north to Sacramento. The day gave my butt a chance to rest. Without the AUS, even the trip to the museum would have been problematic. I would have had to bring several pads (not liners), changed at least two times during the day, worry about whether I had enough pads to go out to eat, hoping I wouldn't leak through (no change of clothes), and all the time with a grimace on my face. With the AUS, I did the whole day with a thin liner and no worries at all -- not even a "back-up" liner. My urologist is distressed that I even need a liner, but compared to what it was (i.e., absolutely no bladder control), I am extremely thankful. I don't need a liner at night when stress incontinence is at a minimum.0 -
PSA Update
Friday, July 23, 2010
I had my blood drawn yesterday for my 1st PSA since stopping the Eligard in April.
The news from the Doc's offic ethis morning is that my PSA is zero.
That is good new. I can hardly feel the bead of Eligard in my stomach- now 3 months after the last 6 month shot was due. I hope I never never never have to go back on the nasty Eligard.
The PSA is holding.
I just need to get UM behind me now and perhaps life may return to something like normal again.
RE: strictures
Noticiable signs of strictures is a narrowing of the urine stream. My stream is getting very thin, again. I tried the self cath yesterday using a 14 fr cath but could not get in.
So it is now a race to see if the stricture closes off the urethra or if I get to UM and surgery before that happens. Exciting- I love races!! I am hoping UM wins this one.
Treatment expected at UM is a urethroplasty. And then I can get the AUS. Perhaps, just perhaps,the doctor can do both procedures at the same time, but it was told to me by my uro that is not very commonly done. So probably two surgeries coming this fall.
PC can get quite expensive.
I am more hopeful today.
Everyone: May you all win the fight!0 -
Was great to hear your PSATrew said:PSA Update
Friday, July 23, 2010
I had my blood drawn yesterday for my 1st PSA since stopping the Eligard in April.
The news from the Doc's offic ethis morning is that my PSA is zero.
That is good new. I can hardly feel the bead of Eligard in my stomach- now 3 months after the last 6 month shot was due. I hope I never never never have to go back on the nasty Eligard.
The PSA is holding.
I just need to get UM behind me now and perhaps life may return to something like normal again.
RE: strictures
Noticiable signs of strictures is a narrowing of the urine stream. My stream is getting very thin, again. I tried the self cath yesterday using a 14 fr cath but could not get in.
So it is now a race to see if the stricture closes off the urethra or if I get to UM and surgery before that happens. Exciting- I love races!! I am hoping UM wins this one.
Treatment expected at UM is a urethroplasty. And then I can get the AUS. Perhaps, just perhaps,the doctor can do both procedures at the same time, but it was told to me by my uro that is not very commonly done. So probably two surgeries coming this fall.
PC can get quite expensive.
I am more hopeful today.
Everyone: May you all win the fight!
Was great to hear your PSA News! Now just beat all the other stuff going on.
Go TREW!!!!
Larry0 -
Agree with you, Larry.lewvino said:Was great to hear your PSA
Was great to hear your PSA News! Now just beat all the other stuff going on.
Go TREW!!!!
Larry
I agree with you, Larry, that is great news for Trew.
Trew. We're all pulling for you. Hang in there !!0 -
With Good men Behind meProfWagstaff said:Agree with you, Larry.
I agree with you, Larry, that is great news for Trew.
Trew. We're all pulling for you. Hang in there !!
I will be to UofM soon enough and things will be better.
I do appreciated the support.
Instead of this forum, though, I have been thinking of getting a new shotgun and take up blasting cans. Nay, probably not- shells are too expensive.0 -
Glad To Hear Your Good PSA NewsTrew said:With Good men Behind me
I will be to UofM soon enough and things will be better.
I do appreciated the support.
Instead of this forum, though, I have been thinking of getting a new shotgun and take up blasting cans. Nay, probably not- shells are too expensive.
Trew,
I've been out of the discussion board this week due to personal business, etc....nothing bad, just stuff. Anyhow I am so glad to hear your good PSA news. Wow that means you are a member of the Zero Club, a good organization to be affiliated with. :-)
Keep us posted re. the AUS. You Hang In There, I believe everything is going to work out for you. As the bumper sticker I saw today "said" Wag More, Bark Less.
This forum is great, with a wonderful bunch of guys who can relate and understand what you are going through. As some of them said, have a good cry if you have to. All of us have had our ups and downs in varying degrees with this prostrate monster.
You are in my thoughts and prayers.
JR0 -
ZEE-ROW!JR1949 said:Glad To Hear Your Good PSA News
Trew,
I've been out of the discussion board this week due to personal business, etc....nothing bad, just stuff. Anyhow I am so glad to hear your good PSA news. Wow that means you are a member of the Zero Club, a good organization to be affiliated with. :-)
Keep us posted re. the AUS. You Hang In There, I believe everything is going to work out for you. As the bumper sticker I saw today "said" Wag More, Bark Less.
This forum is great, with a wonderful bunch of guys who can relate and understand what you are going through. As some of them said, have a good cry if you have to. All of us have had our ups and downs in varying degrees with this prostrate monster.
You are in my thoughts and prayers.
JR
Congratulations, Trew. You're way overdue for some good news. A small request: what's an AUS? I can't figure it out from my 2 reference books and ream of printouts. You get a P for Perseverance! As for JR1949: What He Said! John in Seattle0 -
ZEE-ROW!JR1949 said:Glad To Hear Your Good PSA News
Trew,
I've been out of the discussion board this week due to personal business, etc....nothing bad, just stuff. Anyhow I am so glad to hear your good PSA news. Wow that means you are a member of the Zero Club, a good organization to be affiliated with. :-)
Keep us posted re. the AUS. You Hang In There, I believe everything is going to work out for you. As the bumper sticker I saw today "said" Wag More, Bark Less.
This forum is great, with a wonderful bunch of guys who can relate and understand what you are going through. As some of them said, have a good cry if you have to. All of us have had our ups and downs in varying degrees with this prostrate monster.
You are in my thoughts and prayers.
JR
Sorry. A dup. Too impatient with the internet. J in S0 -
Good NewsTrew said:PSA Update
Friday, July 23, 2010
I had my blood drawn yesterday for my 1st PSA since stopping the Eligard in April.
The news from the Doc's offic ethis morning is that my PSA is zero.
That is good new. I can hardly feel the bead of Eligard in my stomach- now 3 months after the last 6 month shot was due. I hope I never never never have to go back on the nasty Eligard.
The PSA is holding.
I just need to get UM behind me now and perhaps life may return to something like normal again.
RE: strictures
Noticiable signs of strictures is a narrowing of the urine stream. My stream is getting very thin, again. I tried the self cath yesterday using a 14 fr cath but could not get in.
So it is now a race to see if the stricture closes off the urethra or if I get to UM and surgery before that happens. Exciting- I love races!! I am hoping UM wins this one.
Treatment expected at UM is a urethroplasty. And then I can get the AUS. Perhaps, just perhaps,the doctor can do both procedures at the same time, but it was told to me by my uro that is not very commonly done. So probably two surgeries coming this fall.
PC can get quite expensive.
I am more hopeful today.
Everyone: May you all win the fight!
Great news on the PSA front. I have been on Vaca for a week and got away from all of this but I am very glad to hear your news. UM will be another source of good news for you. Keep up the good fight, you deserve good results.0 -
AUSmuttsrule said:ZEE-ROW!
Congratulations, Trew. You're way overdue for some good news. A small request: what's an AUS? I can't figure it out from my 2 reference books and ream of printouts. You get a P for Perseverance! As for JR1949: What He Said! John in Seattle
I'll answer for Trew. An AUS is an artificial urinary sphincter. My urologist referred to it as "the gold standard" when it comes to resolving incontinence. I've got one -- the surgery is brutal, but I can live my life as normal now (at least 95% of it). There are several on the market, but the main one is the AMS 800.
Tom0 -
An AUS is WHAT!!?muttsrule said:ZEE-ROW!
Sorry. A dup. Too impatient with the internet. J in S
Yep, that's what an AUS is. skidrow nailed it- which he should since he has one. I will soon be a mechanical man. I can hardly wait. I do not think I looked forward to Xmas as much as I am now looking forward to my Aug 30 date at UM.
The first order of buisness is to take care of a persistant stricture that keeps growing back. Once that is resolved I should be able to get the AUS installed. I think both surgeries are pretty intense. I care not about such things any more. I just want to get this part of my life as far behind me as possible.0 -
Pads
Hi,
I went thru the diapers, pads etc. In fact, my teenage granddaughter took me pad shopping so I'd know what I was looking at lol.
After 4 yrs. I rarely use them, mostly during heavy activity or if I'm going out and don't want drops on my slacks.
I find wine makes me leak but beer doesn't go figure!
In all they are a small part of life, and don't stop me from anything I want to do.
Put on a sense of humor with your pads and make light of it. It will eventually get better, remeber to kegel especially before you get out of an easy chair!
Good luck from a 4 year member of the group. jj0 -
Padsshipjim said:Pads
Hi,
I went thru the diapers, pads etc. In fact, my teenage granddaughter took me pad shopping so I'd know what I was looking at lol.
After 4 yrs. I rarely use them, mostly during heavy activity or if I'm going out and don't want drops on my slacks.
I find wine makes me leak but beer doesn't go figure!
In all they are a small part of life, and don't stop me from anything I want to do.
Put on a sense of humor with your pads and make light of it. It will eventually get better, remeber to kegel especially before you get out of an easy chair!
Good luck from a 4 year member of the group. jj
You say after 4 years you rarely use pads. This gives me hope. So during the previous 3 years did your daily pad usage slowly diminish? I am currently 16 months since radical prostatectomy in March 2009 and my daily usage has gone down from 5-6 per day to 3-4. Let me state that I have had good days and bad days, but the 5-6 previous and 3-4 are averages.
I am doing my kegels daily now most of the time. I have started wearing briefs instead of Depends diaper with the pads starting last Friday and so far so good. Just have to be diligant to check pads and not let them get too full or Uh Oh!
I have found that I have to not drink anything with caffeine. I drink decaf tea, caffeine free soft drinks, decaf coffee, no wine or beer. I still have stress inconinence when I cough or sneeze, when I sit down on the commode seat, when I strain picking up something.
I agree with you, you have to put a sense of humor with your pads and make light of it.0 -
July 29, 2010
RE uro visit this morning- what I learned, etc....
1. The use of Cialis and muse before and after surgery is not known to benefit sexual rcovery or function. My doctor perfers shots when the time comes, but for now he is waiting to see if the testosorine will kick in as the eligard wears off before addressing any ED issues.
2. And he encouraged me to contact UofM to see if I could get an earlier date than the Aug 30 date. I called this afternoon and was able to get an August 11 date in their off-campus office!! this is like Christmas for me! Imagine- feeling that way about a doctor appointment where they will do "interesting" things to me. I don't care any more. I just want this over with.
3. And RE my question about how much time between a urethroplasty and getting an AUS installed- he said usually 4- 6 months.
Well, I will wait now for two weeks to pass and then get the final word from Dr. Latini who is very good at these things. That is 19 days sooner. I was concerned that perhaps my urine flow might be stopped by August 30 from the stricture. I think I can make the Aug 11 date. And if surgery is needed- I understand that UofM moves pretty quickly with scheduling surgery so I anticipate getting the urethra repaired shortly there after.
Good news today!
The saga continues.0 -
Very good news Trew, 8/11 isTrew said:July 29, 2010
RE uro visit this morning- what I learned, etc....
1. The use of Cialis and muse before and after surgery is not known to benefit sexual rcovery or function. My doctor perfers shots when the time comes, but for now he is waiting to see if the testosorine will kick in as the eligard wears off before addressing any ED issues.
2. And he encouraged me to contact UofM to see if I could get an earlier date than the Aug 30 date. I called this afternoon and was able to get an August 11 date in their off-campus office!! this is like Christmas for me! Imagine- feeling that way about a doctor appointment where they will do "interesting" things to me. I don't care any more. I just want this over with.
3. And RE my question about how much time between a urethroplasty and getting an AUS installed- he said usually 4- 6 months.
Well, I will wait now for two weeks to pass and then get the final word from Dr. Latini who is very good at these things. That is 19 days sooner. I was concerned that perhaps my urine flow might be stopped by August 30 from the stricture. I think I can make the Aug 11 date. And if surgery is needed- I understand that UofM moves pretty quickly with scheduling surgery so I anticipate getting the urethra repaired shortly there after.
Good news today!
The saga continues.
Very good news Trew, 8/11 is actually my DaVinci date also. It seems like things are improving for you and luck is changing. 19 days is a long time but the 11th is right around the corner. Im looking forward to seeing you write something positive about the appointment. Maybe the 4-6 months can be decreased as well. All the best to you.
Ed0
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