Ten-Percenters

TEN-PERCENTER: 

Yes, I'm a 10 percenter. But before we get all excited thinking I just won the lottery, let me explain: The doctors told us that 90 percent of patients who get a Neo-Bladder will be continent during the day and 80 percent during the night. That leaves 10 percent of patients who will be continent during the day but not at night. (This makes sense if you don't think too hard about the math.) But fortunes change (both financial and otherwise) and even though I have been in this 10 percent group since surgery, I believe I am now becoming a member of the 90 percent.

It's been over two years since my surgery and I believe my body is still adapting to its new internal organization. This has come as a pleasant surprise to me because I really didn't want to go to bed for the rest of my life wearing a maxi-pad (or worse - a diaper). And it is a terrible (helpless, degrading, depressing, maddening, etc.) feeling to go to bed each night not knowing whether you will wake up soaked -- one or more times during the night. Parents of bed-wetters please take note.

My urologist told me before the surgery that some people -- mostly women(?) -- opt for the bag because they can't face this possibility. But I have refused to accept this fate -- that I have seemingly been doomed to endure -- and have been determined to figure out a fix for it; like I fix everything else.

From the beginning I have believed that through modifications to my behavior I can, to some degree at least, gain control over this situation. The surgery has changed the 'hardware' in my body as well as the control 'circuits' (nerves, etc.). Since I really can't do anything about this new configuration I have concentrated on the things I can do - or, at least, try to do.

These are:

1. Be thankful for what I have. 
2. Control fluid intake - drink LOTS of water. 
3. Avoid alcohol. 
4. Purge completely before going to bed (ie. be patient). 
5. Get up. 
6. Don't sleep too soundly. 

First of all, be thankful that I'm not one of the 10% who are incontinent during the day. This has never been a problem for me (thankfulness or continence). It took me a little while to learn how to manage and to gain confidence in the new command and control mechanisms and the success I have had in this has given me more hope of learning the rest.

As far as controlling flow; it was a little surprising to me how number two has worked out. (#2 from the above list - not 'number 2' - yeah, that's a funny sentence.) I can't emphasize enough the importance of drinking LOTS of water during the day. Remember the Neo-bladder is made from intestinal tissue which makes this stuff called mucus (yuck, I know). If this isn't flushed out by lots of fluid it tends to muck up the drainage tubing (that was not designed to handle this stuff) which, in turn, makes purging more difficult. I do pay close attention to when I stop drinking before bed time, however, and try to time things so there will be enough time for what I drink to work it's way through my system in time to be purged before I go to sleep.

A glass of wine, or a beer or two, with dinner doesn't cause too much of a problem but it does have an effect. It seems to dry things up and it's more difficult go before bedtime. It also seems to mess with the body while it's sleeping. Perhaps the organs (kidneys, etc) don't 'rest' the same. So it's possible to enjoy alcohol but realize there will be consequences (so what's changed).

Get up in the morning - usually quite early. The transition from asleep to awake takes a while (for me). And the body seems to roust itself in the morning before the mind becomes fully awake. Or perhaps it's just that the body doesn't need as much rest as the conscious mind. Whatever it is, when I begin to wake up I'd better get up right away so I can control things. The body doesn't have a 'snooze button' and the fluid starts to flow.

You may notice an underlying theme in my approach to this problem. I have come to believe there are two main things that keep me dry at night. My body's ability to control the flow while I'm sleeping,  and the amount of pressure (content of the bladder). The first involves building muscle tone around the area where the urethra passes through the groin. I can feel that these (kegel) muscles are firm while I'm awake and I also sense that they relax during the night (perhaps more and more as the night goes on). I have made an amateurish attempt at self hypnosis sort of thing by trying to hold them tight as I go to sleep. I don't know if it has done any good. I don't feel like I have as much control over this so I am focusing on the second problem which is controlling the contents of the bladder when I go to sleep.

The most direct way to control the contents is by purging completely before going to bed. This takes some time so patience is required. Since the bladder walls have no muscles of their own (please see my blog entry "The Wave") you have to use other muscles to push out the fluid. This is like getting the last of the air out of a sleeping bag, if you push on one place some of the air goes out but a lot of it just moves to another place in sleeping bag. During the day it's okay to get most of the 'air' removed, but before bed it's important to get it all. By now I have learned what muscles (both internal and external) work best at applying this pressure. Peeing requires alternating between applying pressure and relaxing (to let gravity do it's work?). Complete purging requires repeating this cycle until nothing more comes out. This may take a while and involve quite a bit of work - and patience.

You may be thinking of a third thing that's obviously involved here: The ability to feel this pressure before it overwhelms the control mechanism - consciously or subconsciously. This feeling is very subtle and even during the day I have to pay close attention in order to recognize it. So I don't hold out much hope of it being strong enough to wake me. When I do wake up during the night (same as before the surgery) and I try to go to the bathroom - thinking it might have been this sensation that woke me -  there usually isn't much to report. Certainly not enough, I think, to have caused any sensation strong enough to wake me.

Finally, there's the thing about sleeping soundly. You know when you wake up out of a deep sleep and feel totally rested? I used to feel wet as well. But that has become very rare - I can't remember the last time - and I'll take that. Actually this is no longer an issue - thank goodness.

The bottom line is that I've been pretty lucky so far -- and now things are getting even better. I don't know if it's due to the steps that I am taking or if it's just a part of my body's natural 'healing' process. Most likely it's some of both. Either way it feels good and it gives me even more reason to be thankful.

If you're going through this, I hope it gives you hope. 

Mirrors

A commenter on this blog was telling me about 'mirrors'. She used this term when talking about the interactions with other people as we deal with the tough things we face in our lives, including sickness and death.  She also talked about the "disclosure/support dance" and how some people try to hide their problems and barricade themselves away from everyone. I've never heard it described like this before and it started me to think. 

Reflections in glass and water:  

When I look in a normal mirror I expect the reflection to be accurate; an honest, impartial, unedited representation of who I am. If it's a cheap mirror (or a reflection in water or a carnival mirror) I can  'adjust' my appearance by moving around. But basically the reflection  represents what I look like to others. But it also represents much of what I look like to myself.

Self Image:
All this is true only if  I am truly honest and impartial about the image I see looking back at me; completely isolated from vanity, ego, and my perception of what is attractive and what is not. For instance, I am nearly completely grey (I have been for many years) but when I look in the mirror I see salt-and-pepper. At my 40th class reunion I was surprised to win the greyest hair award when I was sure that many of my classmates were greyer.  But later, when I saw a photograph of the group of us, I realized that the vote was correct - there wasn't much pepper remaining. Although my mirror may accurately reflect how I appear to others it hasn't done a very good job of 'reflecting' how I appear to myself. For that we need to add some 'magic'.

Magic mirrors:
The wicked queen in "Snow White" needed a magic mirror to tell her the truth -- to tell her that she was no longer ".. the fairest in all the land." And I need my classmates (and others) to act as my magic mirror because, even now, when I look in my mirror I 'see' salt and pepper. Glass mirrors reflect who I am on the surface (sort of). The reflection I get from other people's eyes can go much deeper - it is 'magic' that way. Depending on how much they care, and/or love, it can go to the very roots of my soul. But, of course, the accuracy of the reflection depends on the quality of the glass; the depth of the love and 'the magic'.  It also depends. like with the carnival mirror, on where I stand, and to what degree I am able exercise control over this reflection.

Tuning the magic:
I control how other people see me by controlling how much they see and how much they know. The wicked queen could have chosen to never use the magic mirror and rely completely on her ordinary mirror. Likewise, I can choose to keep myself hidden and to keep my condition secret. I could hide the magic mirror away so I never have to look at it.

So what?
When I look in the mirror and see salt-and-pepper hair it is because, in many ways, it is important for me to see that. It helps me to feel better about myself. It makes me feel young (not old) and that gets me out and doing the sorts of things people who are 'not old' do. I ride bike and keep fit, tackle new projects, study new ideas and develop skills in areas I've never before tried. If I was honest and impartial about  my image in the mirror, with it's thinning grey hair and wrinkled saggy skin, I might be tempted to lay down and wait for death to take me and put me out of my misery.

May I have this dance?
So this reflection is very important to me - whether it's a direct reflection in a mirror or indirect through another person's eyes. If I am looking into an imperfect glass or carnival mirror, I move around until I get the most favorable reflection - I can't help it. But do I do the same thing with other people? My blog commenter calls it "the disclosure/support dance". We can control the reflection we get from other people by controlling what we tell them about our situation (where we 'stand'). When you meet someone on the street and they say; "Hi, how ya doin?", you generally just say; "Fine", or "Great" - right? It doesn't matter how you're really 'doin'. Most of the time you figure they could care less so you don't go into it. They say; "Cool" and go on their way. That was a nice dance for both of you. It made them feel a little better and it made you feel a little better - for the moment. But that won't get you through the night.

But this dance isn't only about me. After all, it takes two to tango. I've stood in funeral reception lines - on both sides - and I know how much it hurts. I hate to pass my burdens on to others and many times the mourners spend most of their time comforting their friends. So wouldn't it be so much easier to just dance around the whole thing (like those two folks meeting on the street) -- hide the mirror away and go on with my life believing that I am "the fairest in the land"?

But seriously now:
Being diagnosed with cancer is a whole lot different than salt and pepper hair - and it's a lot more personal than someone elses' funeral (let's be honest). So the question I faced after the diagnosis of cancer was; "Who do I tell?" And then; "How much do I say?". My wife and I discussed this. She was with me at the meetings with the doctors so she already knew as much as I did. She knows the depth of my soul and her mirror is polished smooth but since we have grown to share much of this mirror, in some ways it lacks the proper magic.  So we decided to call our brothers and sisters (even before we stopped shaking.) What to tell them? We both look up to our siblings and we respect and trust their wisdom and experience, and we desperately needed their help and advice. We needed a clear reflection of our reality that we could use to help us make the difficult decisions that faced us. We told them everything we knew. And the reflections we got back were clear -- and they were magical.

The magic: 
Ease the worries: I asked one brother (retired surgeon) about the procedure. He said they've been doing this for a long time and the procedure is well developed. I asked another brother (retired minister) if I should put it out to my Facebook friends. He said YES definitely. Tell everyone you know. They all want to know - they deserve to know - and they will give you support and encouragement that  you desperately need in order to successfully get through this.  I asked another brother if I should do the surgery now or wait. He said; "Get in there and get it done so you can get on with your life." Everyone we talked to projected the same image, and it built up our trust in the reflection. And we acted accordingly.

I have done all of this. I have looked in the magic mirror and I have seen what it had to show me. And I have acted on that knowledge.  I have danced the dance (and continue to do so) and I hold every dance partner as closely as possible. This may not be the best thing for all people but for me it has made, and continues to make, all the difference.

And thanks to all who have commented on this blog (both in public and in private). You are part of the magic.