Jefnef's Page ~ Update: 1st PSA GOOSE EGG!!!!!

Hi Bluebird,

My personal journey has been unremarkable, I think. I agonized for a long time about what type of treatment to have, and did not discover the healingwell forum until after my surgery unfortunately. I think that whole period would have been a lot easier for me had I known about all of the kindred souls here available for advice and consolation.

So, I travelled that road more or less alone, and just decided one day that surgery was the option I wanted. I still am not sure why I picked that route, but I am glad that I did. I am confident that my PSA test in August will be near zero, and that this whole episode is just one more step in life's journey-- one more "adventure" that I'll move past.

It's interesting how my attitude about cancer has changed now that I am a survivor. The thought of cancer before was intimidating, foreboding and dreadful. Now that I have been through it, I realize it is just one more challenge to living an aware and full life. And I have increased confidence that I'll weather any other challenges that come up down the road. None of the events I had to go through, including this current incontinence challenge, seem like they are overwhelming, thanks to the support of friends, family and this forum community.

I can recall thinking about incontinence years ago, and not being able to fathom how I would deal with it. In actual fact, it's quite mundane, and we do deal with it. It's depressing, if you let it be, and it's not fun. But like everyone here says, Stay Positive and don't get discouraged. Hopefully it will resolve in time. I have noticed not too many folks posting about problems more than a year down the road. I can only assume that they have resolved their issues and moved on. Good for them. I guess I'm next in line.

Thanks again.

Hi ~ Jefnef... I forgot to add this one...... (Direct Link ~ just click on the title below and a new window will open!   Reminder … click on the REFRESH icon once you get there)   Cedar Chopper's Page & Updates ~ Radical Prostatectomy ~ Feb '07   Started by bluebird :)   In Friendship ~ Lee & Buddy     edited to add link below!!!!   Also ~  You can't go wrong with the postings in this thread... There's bound to be something that will work specifically for you!!!   Kegel Help?  started by KW   Post Edited (bluebird) : 6/24/2007 6:16:09 PM (GMT-6)

Hello all,

Just a quick update. I got the results of my PSA test on Aug. 10 and it was "less than zero." I'm relieved but I am not exactly celebrating. Unfortunately, incontinence is still an issue.

I do not seem to have improved at all since I got the cath out about three months ago. Unless I am sitting down or laying down and completely relaxed, I am leaking. If I am working outdoors in the hot sun, and drinking liquids to keep hydrated, I can go through a pad every hour and a half or so. It's a real disincentive to physical activity. Sitting in front of the computer and cruising the internet is a nice low stress and dry entertainment these days. I found out about a product called "Afex" on the healing well forum and have been using that when I need to be active and standing up. It's basically a urine collection system instead of an absorption system. It relieves me of having to change pads every so often, but it's not perfect, and just like pads, I'll end up getting a wet spot on my clothing if I am not careful... or sometimes even if I am careful. It's very frustrating.

I am trying to take it one day at a time. When occasionally I wonder if this will ever get better, it's pretty depressing, so I try to keep it positive.

At my PSA follow up, I was meeting with the nurse practiceoner, not the surgeon. I asked a lot of questions about my continence, and she was not very helpful. She said that most patients are doing better by this stage, but could not articulate what might be causing my problems. She suggested that I let the surgeon do a cystoscopy on me, but I am not eager to have a camera on a tube inserted up my penis-- I guess you are awake for the procedure. Especially since she could not explain exactly what types of conditions they would be looking for or how they might be corrected. Since the facility where my surgery was done is more than an hour from my home, I am planning to go back to the urologist that diagnosed me and see what he recommends.

Erections have been infrequent and about a 5 on a scale of 10. I am doing the viagra therapy, 50 mg three times a week, and my insurance refuses to pay for it.

I'll be out of sick leave soon, but luckily I am eligible for disability. I hope that I can improve to the point where I can return to work soon.

Anybody ever have the cystoscopy? And if so, can you tell me why you had it and what they found? I had something right before they took the catheter out that injected dye into my plumbing, but as I understand it, this is a little different, using a camera.

Thanks

Jefnef,

Excecpt for your incontinence, I'm glad to hear you are otherwise feeling well and not letting this annoyance cloud your mood.

I would offer that on the one hand, you are way ahead of the curve on conquering E.D. - while on the other, you are just a little behind most in beating incontinence. 
Three months is just about two weeks behind where MANY suddenly see rapid improvement!

My personal experience suggests you might benefit from a bio-feedback therapist.

One of the things I was doing at weeks 10 through 14 (when I became pad-free) was sitting/walking around the house nude with an old t-shirt to collect drips - exerting as much kegel control when moving around - & finessing as much urine retention  - as possible.

It is the control (at first conscious - later somewhat automatic) it is the control that you learn to exert when walking around (especially on stairs) that demostrates that the goal of kegel exercises is not a vice-grip - but rather a muscle tone of a group of muscles that share the load.  (The last third cycle of the "elevator kegel exercise" best develops this "tone.")

The developed kegel (pelvic floor) muscles are "couching" that valve that works for you while you sit still.  Your movements and gravity pull on that valve. The pelvic floor muscle bundle must work like your bicep does when you hold a weight  in an extended arm while walking.

One other observation and encouragement:  Any type of pad or physical urine control will delay your improvement. Your mind and sub-conscious will slowly-if-ever make this extraordinary effort (Women are amazing!) if it knows the pad or bucket or whatever will catch the drips.

Personally, I found drinking any alcohol was a real challenge for this learning process.  Some become continent while drinking.  A very few never become continent whether they drink or not.  Others find they are challenged by caffeine or spice. 

Perhaps it is too soon to throw in the towel - just walk around nude with an old one instead.

Respectfully,

C^Cedar
ICTHUS!

Hi Jefnef,

Nice to hear of your great PSA results.  I'll have my first post-surgery PSA in September.

There was a real nice post on bio-feedback for incontinence on the "healthboards" forum by a user with the handle "mauryfromplano."  The link is here: http://www.healthboards.com/boards/showthread.php?t=526270&page=2

I think you can read threads at healthboards (Cancer: Prostate) w/o joining up if you're not a member.  If you do join that forum (it's pretty insightful as well), beware that there are many restrictions on what you can post (i.e. no e-mail addresses, no web sites or links, no contact information, etc.).

Anyway, maury did a good job explaining his first bio-feedback session with a physical therapist for incontinence. 

I hope that helps!

All the best,

Idaho

You're right Jefnef,

I think for the benefit of others we should stick around.  Many here have stayed, but some have moved on.  Like you, I hope moving on is a good sign!  Statistics say it should be a good sign.

In addition, I hope you and bluebird kick me in the pants if I stray away.

All the best,

Idaho

Puget,

Thanks for the response, and the explanation.

If you were able to find humor in a situation like that, how bad could it be? I gotta admit, that was pretty funny... "whale sounds"??? ;-)