The Pad Diaries

lewvino

ejn said:

Very good news Trew, 8/11 is
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.

Ed

8/11 must be a good date.
8/11 must be a good date. Trew has his appointment, ED has his Davinci and a neighbor that lives across the street from me is having his Davinci on that Date. I mentioned this site to him but haven't seen him 'post' yet though he may be lurking.

Good luck to all of you!

Larry

Kongo

lewvino said:

8/11 must be a good date.
8/11 must be a good date. Trew has his appointment, ED has his Davinci and a neighbor that lives across the street from me is having his Davinci on that Date. I mentioned this site to him but haven't seen him 'post' yet though he may be lurking.

Good luck to all of you!

Larry

8/11
I've always thought 8/11 was a great date, too. I turn 60 then.

Trew

Kongo said:

8/11
I've always thought 8/11 was a great date, too. I turn 60 then.

Kongo, I know its early, but
Kongo, I know its early, but happy BD anyway!

May you have many more.

muttsrule

ejn said:

Very good news Trew, 8/11 is
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.

Ed

august 11
The Date
...means nothing to me except it's a big datMy prayers for the best,

Trew

August 2, 2010: Eligard Update
3 weeks after getting the cath removed after surgery I got assualted with a shot of Eligard- the 6-month variety. Its injected into the stomach where it forms a nice neat little ball. It is easy to feel under the skin.

The 2nd shot of eligard was up back in April thihs year- 3 months ago. But for the the last three months I have been palpating the Eligard ball in my stomach trying to help it dissolve faster. I felt it for the last time around July 29. I am beginning August with no noticable Eligard left in me. I can't find any trace of it where it once lived.

Scream of joy!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Now, let what is left of the nasty Eligard work its way out of me completely and lets see if the testicles will start in again. The uro told me it may or may not happen. So-so. I heard so-so before about my long range outcome. So-so is so-so, except, well, I would like to get some male hormone back in the body. Without it its like living with the internal fire out, in mean completely, in lots of areas. I am starting another hot flash right now, but over the next 3- 6 months they should start subsiding and end. Completely. Maybe I might get a small increase in the PSA? Maybe? I don't care. No more Eligard for me.

I am moving on now to the next stage of recovering from PCa. Exciting stuff, indeed.

JR1949

Trew said:

August 2, 2010: Eligard Update
3 weeks after getting the cath removed after surgery I got assualted with a shot of Eligard- the 6-month variety. Its injected into the stomach where it forms a nice neat little ball. It is easy to feel under the skin.

The 2nd shot of eligard was up back in April thihs year- 3 months ago. But for the the last three months I have been palpating the Eligard ball in my stomach trying to help it dissolve faster. I felt it for the last time around July 29. I am beginning August with no noticable Eligard left in me. I can't find any trace of it where it once lived.

Scream of joy!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Now, let what is left of the nasty Eligard work its way out of me completely and lets see if the testicles will start in again. The uro told me it may or may not happen. So-so. I heard so-so before about my long range outcome. So-so is so-so, except, well, I would like to get some male hormone back in the body. Without it its like living with the internal fire out, in mean completely, in lots of areas. I am starting another hot flash right now, but over the next 3- 6 months they should start subsiding and end. Completely. Maybe I might get a small increase in the PSA? Maybe? I don't care. No more Eligard for me.

I am moving on now to the next stage of recovering from PCa. Exciting stuff, indeed.

Glad To Hear Your Good News
Glad to hear your good news that you are moving on now to the next stage of recovering from PCa. August 11 is not far away now. I wish you the best. You are in my thoughts and prayers.

Hang in here and remember, Wag More and Bark Less.

Trew

Trew said:

August 2, 2010: Eligard Update
3 weeks after getting the cath removed after surgery I got assualted with a shot of Eligard- the 6-month variety. Its injected into the stomach where it forms a nice neat little ball. It is easy to feel under the skin.

The 2nd shot of eligard was up back in April thihs year- 3 months ago. But for the the last three months I have been palpating the Eligard ball in my stomach trying to help it dissolve faster. I felt it for the last time around July 29. I am beginning August with no noticable Eligard left in me. I can't find any trace of it where it once lived.

Scream of joy!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Now, let what is left of the nasty Eligard work its way out of me completely and lets see if the testicles will start in again. The uro told me it may or may not happen. So-so. I heard so-so before about my long range outcome. So-so is so-so, except, well, I would like to get some male hormone back in the body. Without it its like living with the internal fire out, in mean completely, in lots of areas. I am starting another hot flash right now, but over the next 3- 6 months they should start subsiding and end. Completely. Maybe I might get a small increase in the PSA? Maybe? I don't care. No more Eligard for me.

I am moving on now to the next stage of recovering from PCa. Exciting stuff, indeed.

Rats!! Aug 3 Update
There is still something there in the spot where the last Eligard shot was given. It is now 3 months plus 14 days since the last 6 month shot period was up. Maybe scar tissue? Will this stuff never go away?

This is a real humbug for sure.

Trew

Trew said:

August 2, 2010: Eligard Update
3 weeks after getting the cath removed after surgery I got assualted with a shot of Eligard- the 6-month variety. Its injected into the stomach where it forms a nice neat little ball. It is easy to feel under the skin.

The 2nd shot of eligard was up back in April thihs year- 3 months ago. But for the the last three months I have been palpating the Eligard ball in my stomach trying to help it dissolve faster. I felt it for the last time around July 29. I am beginning August with no noticable Eligard left in me. I can't find any trace of it where it once lived.

Scream of joy!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Now, let what is left of the nasty Eligard work its way out of me completely and lets see if the testicles will start in again. The uro told me it may or may not happen. So-so. I heard so-so before about my long range outcome. So-so is so-so, except, well, I would like to get some male hormone back in the body. Without it its like living with the internal fire out, in mean completely, in lots of areas. I am starting another hot flash right now, but over the next 3- 6 months they should start subsiding and end. Completely. Maybe I might get a small increase in the PSA? Maybe? I don't care. No more Eligard for me.

I am moving on now to the next stage of recovering from PCa. Exciting stuff, indeed.

Rats!! Aug 3 Update
There is still something there in the spot where the last Eligard shot was given. It is now 3 months plus 14 days since the last 6 month shot period was up. Maybe scar tissue? Will this stuff never go away?

This is a real humbug for sure.

Trew

Trew said:

August 2, 2010: Eligard Update
3 weeks after getting the cath removed after surgery I got assualted with a shot of Eligard- the 6-month variety. Its injected into the stomach where it forms a nice neat little ball. It is easy to feel under the skin.

The 2nd shot of eligard was up back in April thihs year- 3 months ago. But for the the last three months I have been palpating the Eligard ball in my stomach trying to help it dissolve faster. I felt it for the last time around July 29. I am beginning August with no noticable Eligard left in me. I can't find any trace of it where it once lived.

Scream of joy!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Now, let what is left of the nasty Eligard work its way out of me completely and lets see if the testicles will start in again. The uro told me it may or may not happen. So-so. I heard so-so before about my long range outcome. So-so is so-so, except, well, I would like to get some male hormone back in the body. Without it its like living with the internal fire out, in mean completely, in lots of areas. I am starting another hot flash right now, but over the next 3- 6 months they should start subsiding and end. Completely. Maybe I might get a small increase in the PSA? Maybe? I don't care. No more Eligard for me.

I am moving on now to the next stage of recovering from PCa. Exciting stuff, indeed.

Rats!! Aug 3 Update
There is still something there in the spot where the last Eligard shot was given. It is now 3 months plus 14 days since the last 6 month shot period was up. Maybe scar tissue? Will this stuff never go away?

This is a real humbug for sure.

muttsrule

JR1949 said:

Glad To Hear Your Good News
Glad to hear your good news that you are moving on now to the next stage of recovering from PCa. August 11 is not far away now. I wish you the best. You are in my thoughts and prayers.

Hang in here and remember, Wag More and Bark Less.

Trew & August 11
August 11 is today and it's 1 p.m. in Trew-land I think, and my prayers go up and out and eastward. Persevere! John in Seattle.

Trew

Aug 11: U of Mich Visit Today
I think I might want to just go away for awhile. Dr. Latini at UM is such a nice person, and very sympathic. And probbly no urethroplasty for me. The scar tissue is in the wrong place in an area that has been heavily hit by radiation and only a few doctors in the country might take on such a case.

The option would be to open up the stricture with a knife and then cath for 5 days or so and then back to self cath to see if that will contain the stricture/scar tissue. I am a mim of 6 months from an AUS, but maybe up to two years depending on how the strictues respond to the knifing. She is going to schedule that as soon as possible, maybe this coming week. The opening that is left is very narrow- her scope today could not even get close to my bladder but she did get a good X-ray with dye.

Worst case senario is I end up by-passing the urethra altogether and get an external bag- remote possibilty but she just wanted to mention it, in case.....

I was hoping for a straightforward urethroplasty and then on to the AUS. At this time the AUS is not even a certainity. Depends on how well the knifing works and few other factors. Somewhat sobbering day. So, looks like I will be back to being attached to a cath bag soon for a few days.

I am very tired. I don't know if I want to respond much more. This just goes on and on....

Everyone- thanks again for your support and well wishes. i know someday I will get a break for the better in all this.

-hiker

Trew

Friday, Aug 13.
I got a call
Friday, Aug 13.

I got a call from the U of MI today with a surgery date for Friday, Aug 27. The plan is to go in and cut the scar tissue building in the urethra- from the X-ray it can be seen there is a lot of. Perhaps this way the scar tissue's growth and recurrance may be checked. Dr. Latini mentined this may have to be done two or three times over the next 12- 18 months. When the scarring is checked- then I can go on to the AUS procedure.

I am now trying to settle into the idea of a much longer wait for the AUS then previously considered.

I had PC- then I had treatment- then I had scarring- and then I end up looking at a series of OR appointments to correct the scarring- and then an AUS. I certainly am getting my money's worth. some of you guys only get one surgery and your done. Well, I have been selected....

OK- I CAN do this!! Maybe by the end of 2011, early 2012 I can be past all this an on into my next new reality and normal. There is always a new normal to adjust to.

Trew

Friday, Aug 13.
I got a call
Friday, Aug 13.

I got a call from the U of MI today with a surgery date for Friday, Aug 27. The plan is to go in and cut the scar tissue building in the urethra- from the X-ray it can be seen there is a lot of. Perhaps this way the scar tissue's growth and recurrance may be checked. Dr. Latini mentined this may have to be done two or three times over the next 12- 18 months. When the scarring is checked- then I can go on to the AUS procedure.

I am now trying to settle into the idea of a much longer wait for the AUS then previously considered.

I had PC- then I had treatment- then I had scarring- and then I end up looking at a series of OR appointments to correct the scarring- and then an AUS. I certainly am getting my money's worth. some of you guys only get one surgery and you're done. Well, I have been selected for more!!!

OK- I CAN do this!! Maybe by the end of 2011, early 2012 I can be past all this an on into my next new reality and normal. There is always a new normal to adjust to.

BRONX52

Trew said:

Friday, Aug 13.
I got a call
Friday, Aug 13.

I got a call from the U of MI today with a surgery date for Friday, Aug 27. The plan is to go in and cut the scar tissue building in the urethra- from the X-ray it can be seen there is a lot of. Perhaps this way the scar tissue's growth and recurrance may be checked. Dr. Latini mentined this may have to be done two or three times over the next 12- 18 months. When the scarring is checked- then I can go on to the AUS procedure.

I am now trying to settle into the idea of a much longer wait for the AUS then previously considered.

I had PC- then I had treatment- then I had scarring- and then I end up looking at a series of OR appointments to correct the scarring- and then an AUS. I certainly am getting my money's worth. some of you guys only get one surgery and you're done. Well, I have been selected for more!!!

OK- I CAN do this!! Maybe by the end of 2011, early 2012 I can be past all this an on into my next new reality and normal. There is always a new normal to adjust to.

TREW
TREW--SORRY TO HEAR OF MORE SURGERY IN YOUR FUTURE. IT SEEMS THAT YOU HAVE HIT ROADBLOCKS EACH AND EVERY STEP ON YOUR ROAD TO RECOVERY!! SOUNDS LIKE THE PEOPLE AT U OF MI HAVE PINPOINTED THE PROBLEM AND HAVE A PLAN TO RESOLVE THIS ISSUE. ALTHOUGH IT PROLONGS YOUR RECOVERY AND RETURN TO NORMALCY, I BELIEVE YOU WILL WEATHER THIS STORM JUST AS YOU HAVE DONE IN THE PAST. ALTHOUGH YOU HAVE YOUR GOOD AND BAD DAYS, I KNOW THAT YOUR POSITIVE ATTITUDE AND SOMETIMES HUMOROUS TAKE ON THIS ISSUE CAN ONLY RESULT IN A GOOD OUTCOME. HANG IN THERE !!! YOU HAVE ALOT OF PEOPLE ROOTING FOR YOU FROM THE SIDELINES AND WE WILL BE PRAYING FOR A SUCCESSFUL CONCLUSION TO YOUR PC JOURNEY. REGARDS--DAN

JR1949

BRONX52 said:

TREW
TREW--SORRY TO HEAR OF MORE SURGERY IN YOUR FUTURE. IT SEEMS THAT YOU HAVE HIT ROADBLOCKS EACH AND EVERY STEP ON YOUR ROAD TO RECOVERY!! SOUNDS LIKE THE PEOPLE AT U OF MI HAVE PINPOINTED THE PROBLEM AND HAVE A PLAN TO RESOLVE THIS ISSUE. ALTHOUGH IT PROLONGS YOUR RECOVERY AND RETURN TO NORMALCY, I BELIEVE YOU WILL WEATHER THIS STORM JUST AS YOU HAVE DONE IN THE PAST. ALTHOUGH YOU HAVE YOUR GOOD AND BAD DAYS, I KNOW THAT YOUR POSITIVE ATTITUDE AND SOMETIMES HUMOROUS TAKE ON THIS ISSUE CAN ONLY RESULT IN A GOOD OUTCOME. HANG IN THERE !!! YOU HAVE ALOT OF PEOPLE ROOTING FOR YOU FROM THE SIDELINES AND WE WILL BE PRAYING FOR A SUCCESSFUL CONCLUSION TO YOUR PC JOURNEY. REGARDS--DAN

Trew
Trew,
I am so sorry to hear about more surgery in the future for you. As Dan said it does sound like that doctors at U of MI have a got a plan to resolve this issue for you. I too believe, and I know that you can and will weather the storm. Hang in there and keep a positive attitude.

You are in my thoughts and prayers.
JR

Trew

JR1949 said:

Trew
Trew,
I am so sorry to hear about more surgery in the future for you. As Dan said it does sound like that doctors at U of MI have a got a plan to resolve this issue for you. I too believe, and I know that you can and will weather the storm. Hang in there and keep a positive attitude.

You are in my thoughts and prayers.
JR

Tuesday, August 17: Waiting
I had the EKG done yesterday at my family doc here in Battle Creek. I am on stand-by if a cancelation comes up, but otherwise I can make it to Friday, Aug. 27. I think. Its sort of a race to see if I make surgery first or the strictures close the urethra off. I"m betting on the surgery to win for personal reasons.

What really has me worried abut this surgery is I leak a lot and the pre-surgery stuff, where they tuck you into a nice hospital bed after removing your clothes and giving you a nice hospital gown is, well, I leak. Even pre-surgery is so complicated any more.

And it seems, embrassing. Probably just me.

Skid Row Tom

Trew said:

Tuesday, August 17: Waiting
I had the EKG done yesterday at my family doc here in Battle Creek. I am on stand-by if a cancelation comes up, but otherwise I can make it to Friday, Aug. 27. I think. Its sort of a race to see if I make surgery first or the strictures close the urethra off. I"m betting on the surgery to win for personal reasons.

What really has me worried abut this surgery is I leak a lot and the pre-surgery stuff, where they tuck you into a nice hospital bed after removing your clothes and giving you a nice hospital gown is, well, I leak. Even pre-surgery is so complicated any more.

And it seems, embrassing. Probably just me.

Pre-surgery leaking
There were times when I removed my clothes except my underwear (with pad), put the gown on and slipped under the sheets. When the nurse said, "Did you take everything off?", I told her I still had my underwear on and I would take it off just before they wheeled me down for surgery. Leakage was minimal when I was on my back, but I still leaked when I squirmed around. Even with the underwear off, I had a paper towel that I held down there for "protection". I'm sure they're used to it, but it's just more humiliation compliments of PC. Thank goodness for my AUS now.

Trew

Skid Row Tom said:

Pre-surgery leaking
There were times when I removed my clothes except my underwear (with pad), put the gown on and slipped under the sheets. When the nurse said, "Did you take everything off?", I told her I still had my underwear on and I would take it off just before they wheeled me down for surgery. Leakage was minimal when I was on my back, but I still leaked when I squirmed around. Even with the underwear off, I had a paper towel that I held down there for "protection". I'm sure they're used to it, but it's just more humiliation compliments of PC. Thank goodness for my AUS now.

Good Advice
Skid Row, very practical advice. I think I'll wear a depends in with a pad inside and then just get rid of the pad and they/me can get rid of the depends when the time is right.

So many complicatons any more.

I am looking forward to my AUS. Just wish it was easier for me to get one installed.

hightide

Trew said:

Good Advice
Skid Row, very practical advice. I think I'll wear a depends in with a pad inside and then just get rid of the pad and they/me can get rid of the depends when the time is right.

So many complicatons any more.

I am looking forward to my AUS. Just wish it was easier for me to get one installed.

Good luck and then Bad luck !!!!
Hey Trew; have not been able to get on the board for a few days. As you know I went to get my toys activated on Aug 11 when you went for your evaluation. I got a virus in my computer and was not able to see how your appt. went on the 11th. Sorry to hear what you found out. Hang in there and it has got to get better soon. I got half good news and half not so good. My 3 piece implant worked fine but my local urologist was not able to get the AUS to activate!!! He tried three or four times and said this is the first time he had not been able to activate one of these. He went and got one of his partners to come in and he also could not get it to work. He said he had a patient that has one put in at the Mayo Clinic in Jacksonville that he could not activate so he sent the guy back over to the Mayo and it worked the first time they tried. My doctor said lets give it tow more weeks so he is going to try again Aug 26 and if that does not work I may have to go back to Austin, Tx where I had mine installed. If it were not for bad luck, you and I would have no luck at All!!! We are boun to start getting a break SOON !!!!!!Regards,hightide

Skid Row Tom

hightide said:

Good luck and then Bad luck !!!!
Hey Trew; have not been able to get on the board for a few days. As you know I went to get my toys activated on Aug 11 when you went for your evaluation. I got a virus in my computer and was not able to see how your appt. went on the 11th. Sorry to hear what you found out. Hang in there and it has got to get better soon. I got half good news and half not so good. My 3 piece implant worked fine but my local urologist was not able to get the AUS to activate!!! He tried three or four times and said this is the first time he had not been able to activate one of these. He went and got one of his partners to come in and he also could not get it to work. He said he had a patient that has one put in at the Mayo Clinic in Jacksonville that he could not activate so he sent the guy back over to the Mayo and it worked the first time they tried. My doctor said lets give it tow more weeks so he is going to try again Aug 26 and if that does not work I may have to go back to Austin, Tx where I had mine installed. If it were not for bad luck, you and I would have no luck at All!!! We are boun to start getting a break SOON !!!!!!Regards,hightide

Activating the AUS
Do you have the "owner's manual" for this? The instructions tell you how to activate it. In fact, it's not unusual for a wearer to turn it off at night (some feel turning it off gives the tissues a chance to rest and lessens the chance of tissue erosion). I keep mine activated at all times. Unless the button is stuck, you should be able to do it yourself. The directions say, "Push deactivation button a few times to lossen poppet. Then give the pump bulb a quick, forceful squeeze." There are three optional methods if the "normal" method doesn't work. Call 952-930-6261 for the Patient Liaison and they'll FAX or mail you the "Patient Information and Instructions for the AMS Sphincter 800 Urinary Control System".

Geez, it just doesn't let up with PC, does it?