Haunted House

I'd finished hanging bed sheets over the windows. I had radios blasting music both upstairs and down. I had all the lights in the house turned on and all the doors and windows locked tight. The car keys were carefully placed to aid in a hasty exit but it was so dark outside I doubt I'd even attempt to make it to the car. I was ready for my first night alone in the old farm house. And, coincidentally, it was Halloween night. I kept thinking; "I hope no kids show up because I don't have any candy." Obviously this was the least of my worries.

I spread my sleeping bag on the old sofa that the former residents had left behind for me to use. I warmed a cup of hot chocolate in the microwave - also left by former residents - and settled in for the night.

After reading a couple magazines and finishing my cocoa, I turned off MOST of the lights; careful not to look around too much - if there were things moving around in the dark I didn't want to see them. I turned the radios down. I didn't turn it off because if there were things moving around I didn't want to hear them either. I removed my shoes and climbed into the sleeping bag fully clothed (again in case of a hasty exit). I had some extra blankets that I pulled up over my head (just like I'd done so many years ago, as a child growing up in this same house). And soon I was asleep.

I woke a couple times in the night to go to the bathroom. As I walked through the house, I kept focused on my destination, careful not to look around, and each time I climbed back into 'bed' I neglected to pull up as many of the extra blankets. It was hot under there and comfort was more important than my fear of the dark - another thing I remember from my childhood.

Sunrise

I woke just before the first light of dawn (according to my watch because it was still pitch dark outside). I put on my shoes, made a cup of instant coffee and waited for the new day.

As light started to show in the east I took the sheets down from the windows brewed another cup of coffee, and found a good seat to watch the sunrise over the lake. What a show that was. I've never noticed it before but when the sun clears the cloud bank on the horizon all the clouds in the sky get pure white tops over their grey bottoms. Anyway, I'd survived my first night in the house and was richly rewarded for my efforts with this beautiful show.

Maybe living in the country wouldn't be so bad. I didn't realize it right away but I was beginning to soften to the idea. I've lived in the city for over 40 years where it's never dark at night; it's never this quiet; and you are always surrounded by people. Almost all of them could care less who you are or what you do but you can never know for sure - so you're always on your guard. You always know they're out there. As I looked out on the yard, and across the surrounding farm land, the only 'living' thing I could see was a red squirrel. Not very dangerous but worthy of my attention just the same. So I brewed another cup and watched him scurry around the yard and up into the tree tops where he hoped from tree to tree and then down again and off somewhere beyond my view.

After breakfast, I began the days' (months') work of painting walls, fixing outlets, replacing fixtures, repairing leaky pipes. Over the past fifteen years - since my parents moved out - we've rented out this house. Our renters have typically been excellent boarders (all but the first) and they have taken very good care of the house. In most cases they have left it in much better condition than they found it. (yes, we've been very lucky.) Even so, there have been many issues that have needed attention (that aren't worth hiring someone to fix but still build up over time in an old house) and as old renters are usually moving out the same weekend the new renters are moving in, it's hard for me to sneak in to fix these things. I don't feel comfortable entering someone's house (even a tenant's) to fuss about fixing things. And things like painting the walls, replacing fixtures, and adding outlets, go a long way towards making the place presentable to potential renters - especially if I'm going to raise the rent.

So this time I have not advertized the house immediately after the renters moved out so that I can spend some time living in the house (camping would be a better word since it's pretty much empty). I can now work on these projects at my leisure and without interruption. Tackling these projects in an old house always seems to evolve into broader issues and it's nice to have the time to follow wherever these problems lead. I have also discovered that if you live in the house it will quickly 'tell' you about other problems that may be too minor for renters to bother telling you but would be nice to fix anyway. Plus I wanted to try out 'living' on the farm again. It's been over 40 years since I virtually ran screaming away from this farm; it's tedium; it's isolation (remember Luke Skywalker as a boy on Tantuine?) Now, I want to move back? After a lifetime (in many respects) of living far away,  I wanted to spend time here to see how much had really changed. Or how much would still have to change before I was willing to move back.

So, I spent the first part of this day gathering my tools and supplies from the truck and from the shed where I base my operations during my visits to the farm when the house is rented. Among these were two big boom boxes which could provide me with company (music and talk) while I worked alone in the house.

The next few days I worked with the radios blasting on all floors of the house.  Every time I left the house I made sure to lock up - even when I was just going out in the woods. I always locked the car at night - by habit - and one day I was getting ready for the night and had to retrieve one more thing from the car. I flipped the lock and closed the door, realizing too late the keys were still in the ignition (why did I do that?). I didn't have to go anywhere so I just left them for the night. I'd deal with this tomorrow. But it didn't help my piece of mind, that night, knowing my escape vehicle was unavailable.

The next day I found someone to help me open the car. They actually kidded me for; ".. locking this old thing." The rest of the week passed pretty much the same (except for locking the car) and I drove 5 hours back to the city. I was reluctant to leave the house empty but my neighbors had agreed to 'keep an eye on it'.

I looked into buying a home security system but the only ones I could find also required purchasing installation along with a 'service'.  I couldn't see paying someone to install such a simple thing OR paying someone to answer the phone when the system called to report a problem. But this is another story.

A few days passed before I made the return trip to the haunted house.  In this brief time away, I discovered that, in my absence,  much had changed.

( to be continued)

The Wave

When faced with new difficulties we have to try resolve them in a way that will fit into the overall model of reality that we hold in our minds; the model which we use to direct our lives.  Often this involves making some hypotheses about the true nature of the problem, inventing some tests to prove or disprove, and then developing a solution that we can live with.  One way to analyze the unknown is to try to relate it to something familiar. Like the wave at a football game.

The Difficulty: 

Nighttime is not my friend. Sleep is not something I look forward to because it is always a venture into the unknown; into the new difficulties in my life; into one of the side effects of bladder surgery. Because I never know, when I go to sleep, whether I will wake up dry or wake up soaked or something in between. For many months after surgery I was plagued with night sweats and I would go through many changes of tee shirts (and blankets, sheets, and pillows) nearly every night. Those eventually stopped and I could finally concentrate on the problem of controlling my new bladder while sleeping. Or at least tuning in to the signals and waking up in time. There seems to be a couple different things going on here:

1. Drainage; controlling and/or sensing leakage (for want of a better word). A few drops here and there, now and then, that the pad can absorb and keep up with for a long time. I have gotten much better at this over the past year. I noticed one night that as I was settling in to bed I was relaxing (down there) in preparation to sleep - compared to how I felt during the day. I decided to try contracting those muscles and holding that feeling until I went to sleep. This seems to have helped a lot - a surprise to me. 
2. Flow; often - early in the morning, and after about 8 hours of sleep, I would wake up suddenly to the sensation of a strong flow. Often this would overwhelm the pad and warm my leg or whatever was down stream. And by the time I could muster enough consciousness to shut things down, well, let's just say it was usually too late. Which leads me, finally, to The Wave.

The Wave: 

My surgeon took a lot of pride in the fact that he performs nerve sparing surgery. Most of what he talks about in this regard is sparing the nerves that passed next to the prostate and on down to the penis to control the erection process (he's a young guy and still believes that sex is important). I have come to believe that he was also able to spare the nerves that feed the piece of intestine that he moved and reformed into the neo-bladder. I think you'd have to.

The surgeon has told me that the new bladder doesn't have muscles like the original bladder that contracted and pushed the urine out when I took a pee. Based on my experiences with this neo-bladder I have come to the conclusion that there are, in fact, muscles in the neo-bladder walls that are capable of contracting and emptying the bladder very effectively. The problem is that these are not voluntary muscles, they are not very strong, and I have no control over when they do their work (more or less).

Evidence the fact that I can sit down to pee and work as hard as I can to empty the bladder - all the tricks I have been taught and have learned. When I think I'm finished there are times when, in the process of pushing, etc. I discover that I also need to take a dump. NOW - once I initiate this process and almost immediately, I get a strong flow of urine. So, I've learned that if I really want to clear out the bladder all I need do is take a dump. What's going on here? It could be that in the process of moving this bowel through the lower colon (which passes next to the bladder) I am squeezing the 'bag' - so to speak - in a way that I cannot do either with my diaphragm muscles or through manual external massage.


But an alternative hypothesis has come to mind based on this and other evidence. I believe these muscles are used in the intestine to move digestive materials through the intestine using peristaltic contractions. The Neo-bladder has retained these muscles and the nerves that control them and the net effect is similar to the 'wave' that the fans do at a football game.

Cheerleaders run - in front of one section and then the next - waiving their hands up in the air to get the fans in each section in turn, to stand and cheer and then sit back down while the next section stands and cheers. And so on, as the wave moves around the stadium.

My surgeon removed one of these sections and made it the neo-bladder and in the process kept the nerves intact so the relocated section still 'thinks' its in it's original place in the 'stadium'. So as the peristaltic contraction moves down the intestines and that 'cheerleader' gets to where that relocated section used to be, the neo-bladder contracts (stands up and cheers) as if it were still in it's original place in the intestinal system.

And so (the test)? 

I can imagine that when we are sleeping our body functions shut down along with our minds ( a concept I became very familiar with after my surgery). When we are fully rested our body begins to wake up and the functions fire up again so the body is prepared for whatever the mind decides to ask it to do when it gets around to waking up. So when my intestines wake up, they begin moving things around again and since my neo-bladder still thinks it's intestine, it takes it's turn when the wave passes.

The solution here seems to be to tune my mind to wake up when my body wakes up. This involves both sensing the fact and then (the hard part) acting on it. When my body wakes up it's time for me to get out of bed because if I'm up and moving then I can easily control the wave when it hits. Otherwise I will snooze (like I've done all these years) and then it becomes too late.

This seems to work - as long as I don't mess with things. As long as I don't stay up and get over tired. As long as I don't party too much or eat too much before bedtime. As long as I don't drink anything when I wake up at night (don't know for sure if this makes a difference) but I drink a lot of water in the daytime to make up for it - gotta keep the new system well flushed out. And as long as if I wake up and it's close to morning, I get up.

Looking back - sort of.

Anniversaries for events of the past year and a half are coming and going. Some are carefully marked and some pass relatively unheeded. Facebook now has a feature that reminds you what you were posting a year ago (how long do they keep that stuff?) A year ago today I was talking about chemo. That's an anniversary that I don't care to think about.  I guess I really am no longer too interested in looking back. That's one thing that has been changed by this experience. Let's create new life events and worry less about the anniversaries of the old. After all, the future is much more precious than the past because it has one thing the past cannot have - it has promise.  Having said that....

Looking 'Back': 

I have made a new friend. John was in St. Mary's Hospital the same time as me - and recovering from the same surgery. It turns out that he and I had had pretty much the same experience over the prevous year and a half (diagnosis, treatment options, chemo, surgery, etc.) What a coincidence.

We were introduced in the hospital because we were 'unique' and perhaps we could help each other through our respective recoveries. It worked. We had this whole experience in common. Both of us - and our wives and our families - had been pretty much beaten down lately and none of us really knew what was in store. We had no reference upon which to base optimism (in the immediate sense), so we 'referenced' each other. The doctors and nurses were great and very supportive but they were limited to generalities. They'd say things like; "You can't go home until you pass gas." We understood that this was a milestone in our recovery but what did it really mean to someone who has had two feet of their intestine 'relocated'. And what about this new bladder - fabricated from that intestine - how the heck does that work? This is why we were unique and why we all, I think, felt a little lost.

Another reason was that we had been told - before the surgery - that we may need 3 - 5 days to recover enough to go home. It took me a week and John had already been there 2 weeks before me. How depressing was that. I had insisted that my wife stay with me - she slept on a cot next to my bed - because I was afraid. Would she have to sleep there for two more weeks?

Misery loves company and we were able to find humor in our shared experiences. My spirits were raised because I wasn't having the same complications that were keeping John down. I think John's spirits were raised because I was proof that you could 'really' recover from this and go home.

John and I have stayed in touch and have continued to compare notes during regular phone conversations.  We are finding that one of the things we now share is the craftsmanship of our surgeon - impressive so far - but we have both had some minor problems.  The connection of the ureter from the left kidney into the neo-bladder became plugged with scar tissue. Neither of us has had pain associated with this (an expected symptom of kidney problems according to our urologist/surgeon). Both of us have recovered from the nephrostomy experience and, hopefully, our left kidney's are recovering as well. We are awaiting our follow-up visit with another ultrasound scan and blood test results.

We compare notes and that still helps. These are not things learned during office calls or by browsing the internet.  We are still unique in that even though this surgery is fairly common, relatively few share the particular craftsmanship that went into ours.

Can you say Nephrostomy?

Minor surgery to remove blockage in uriter going into neo-bladder that may be causing left kidney to swell and begine to lose function. This is done by placing a nephrostomy in my back, inserting a small baloon and using this to break up the scar tissue in my uriter (like an angioplast? ) A stent is then placed from my kidney into the neo-bladder to hold the uriter open. the nephrostomy tube is left coming out of my back but it's capped off and non-functional. 

Surgery.
May 11, 2011 I had above procedure. I was barely put under in the Radiology Operating Room at St. Mary's Hospital. I didn't feel a thing and remember kind of being there but not so much until they said it was all over and time to get up. It's the same sedatives they use for colonoscopy (Fentanyl and Versed). Good stuff. The surgeon said everything went fine. There was almost no flow when he first looked. He 'blew out' the scar tissue blockage and now there is great flow from that kidney. The kidney stent has been placed and a small tube remains in my back. The nurse gave me some extra dressing and it was back to the room to get dressed and leave.

Back to work.
I was scheduled to umpire that night but it was rained out. I was thankful for that as I was still pretty sore. I did umpire the next night and it went fine. I worked the plate so I wouldn't have to run too much. Running seemed to agrivate the nephrostomy - bouncing up and down. I had the weekend off but was back at it every night the next week.

Pain and ...
The first weekend after surgery the Nephrostomy was causing quite a bit of pain. Of course I wasn't taking it easy but they said I could resume normal activities. I called the doctor on Saturday (nurses on call) and they assured me that what I was feeling was normal reaction to having this thing in my body. Like a sliver it agrivates the skin.

The following Tuesday we went to urgent care because when we changed the dressing it seemed like an awful lot of green puss. The doctor said this was probably normal but took a culture to make sure there wasn't something dangerous in the mix of normal skin bacteria. The culture came back normal.

Friday night I came home from my ball game, ate dinner, and noticed that my shirt was wet in back. I looked at my hand and it was full of blood. My wife but a big hunk of gauze and we headed for the ER. The doctor called in a Urologist who took a look at it and put her finger on it - HARD!! She applied pressure for about a minute and the bleeding stopped. She decided to place one stitch to insure it didn't open again. I was thankful for this since I had a double header the next day. She said the blood vessels in the skin can bleed profusely and I must have done something to break this one. I did umpire on the bases that evening which caused me to run a lot - but I didn't feel any pain other than the normal soreness from jostling the tube. 


Follow up with Urologist.
Blood tests showed my numbers are improving slightly. My chlorine is a little high and my CO2 is a little low which may mean a slight acidosis (not uncommon to Neo-bladder). Not worried yet.

He showed us the images from the installation of the stent showing how it had opened up the tubes (with a balloon) and how the die began to flow into the bladder.

He want's to leave stent in for 4-6 weeks to insure the healing doesn't re-close the tube - callous doesn't reform.

Removing the stent.
Back to the Radiology O. R. but this time just a quick check with injected dye - pulling the stent - injecting more dye - pull the nephrostomy tube. All this with no anesthetic and no pain!!
Surgeon said dye is flowing like gangbusters. They just put on a little dressing to cover the wound and send me on my way.

Dr. 'Popeye'

Sometimes doctors talk like Popeye; they have a normal voice that they use to describe your condition, etc. But they sometimes use a voice that's kind of under their breath for little parenthetical bits of information (alternatives to treatment, possible side effects, consequences...) You must pay very close attention and listen to both voices (to know whether Popeye really expects to be repaid next Tuesday for a hamburger today.)

Results of Renal Scan:
Split function is 81% Right kidney and only 19% left kidney. This indicates a poorly functioning (or non-functioning) left kidney.

My urologist/surgeon says this is probably due to blockage where ureter is attached to the neo-bladder. Probably a side effect of the surgery since function was normal before surgery and reduced after. This is commonly caused by scar tissue forming around the area where the ureter was stitched onto the neo-bladder but he is surprised that this blockage hasn't caused me more discomfort and, was his primary reason for discounting it prior to now. He said that this usually causes severe back pain similar to the pain and cramping caused by kidney stones. I have had no pain above some mild aches that could be attributed to stiffness in my back muscles.

Urologist/surgeon gives two options:
1. We do nothing and wait and see. Continued blockage will probably cause left kidney to shut down completely and 'go away'. This would be okay (people typically do very well with just one kidney) except that neo-bladder may put too much stress on one remaining kidney and may need to be removed to save the right kidney.

2. Schedule radiology surgery to place a stint in through back and down through left kidney and ureter and then into neo-bladder. During this procedure they would insert a balloon-like device into the area where the blockage is and inflate this to break up any scar tissue. The Stent is then left in place for 4-6 weeks to maintain the passageway while the connection re-heals. Stint should have no effect on my activities.

Up until now it seems that a Creatinine count of 1.7 was a 'concern' but not serious. Now he said it indicates only one kidney is active.  Again, the lack of pain normally associated with this sort of problem with the kidney complicated this diagnosis.

Of course I chose #2. I asked; "Why wouldn't I?" He couldn't give me any reason not to. So he started the process of scheduling a radiologist to perform the surgery. It would be the same drill as a colonoscopy (without the yucky drink): a local anesthetic and an IV for pain medication - up and out the same day. No biggie, except for the tube hanging out my back but that shouldn't be a problem.The procedure is called a uritic stent with a nephrostomy [more information on this procedure]
They will be inserting an 'antigrade stent' which goes in through the nephrostomy tube - in my back - which is then capped off until the stent is removed.

It's all a surprise to me too:
I have been feeling great - up until now - and I'm just getting used to using this new NEO-BLADDER. Now, for the first time, I am told that I MIGHT have to give it up? This is sobering news. I have become rather attached to this thing and even though it can still be a problem, I would really hate to lose it. And I would really hate to be forced to get a bag after all this!! I don't believe this and I have complete confidence that once the plug is removed my left kidney will recover completely.

Creatinin 1.7

At our 'six-month meeting with my surgeon/urologist he expressed concern over my high-ish creatinin levels ~1.7 ( normal range of 0.7 to 1.3). These have been high since my surgery in November but he hasn't been concerned because some elevation is 'normal' following this surgery. But after 5 months the doctors start using words like 'cronic' and my surgeon wanted to take a closer look at my kidney function. 

Kidney Function: 

The Creatinine test measures the level of the waste product creatinine in your blood and urine. This test tells how well your kidneys are working. The substance creatine is formed when food is changed into energy through a process called metabolism. Creatine is broken down into another substance called creatinine, which is taken out of your blood by the kidneys and then passed out of your body in urine. 

Creatinine is made at a steady rate and is not affected by diet or by normal physical activities. If your kidneys are damaged and cannot work normally, the amount of creatinine in your urine goes down while its level in your blood goes up. [Read more on Web MD]

Since my Creatinine levels have remained high since my surgery (and both x-rays and cat scans of my kidneys have indicated a swelling of the left kidney) I was scheduled for a "NM Renal Scan w/ Lasix" test where they injected a radioactive dye into my blood which would be filtered by the kidneys and moved to the bladder. They watched the progress of this dye, with some sort of scanner, for 60 minutes, and from this they could tell what percentage of the dye was processed by each kidney. [Read more about NM Renal Scans].  I was instructed to lay as still as possible during the scan and once the techician was satisfied that I was lined up properly and all systems were good, she turned the monitor so I could watch the progress (pass the time). I could tell right away that the left kidney was quite different than the right. One glowed much brighter than the other (I think it was the left). The Lasix is injected to stimulate the kidneys and since I had been instructed to drink up to 36 oz. of liquids prior to the scan I was a little concerned with holding it for an hour (with the neo bladder). I could see the bladder filling with the dye but I had no problem lasting the hour.

I will have to wait until my appointment with the surgeon (next week) to learn the official results. From what I saw, and from what little I know, I don't think the results will be good ...

Play Ball !!

First Baseball Game After Recovery (It's so great to be back).
Shortly after I learned that I had cancer I went back to umpiring Little League baseball. At my first game back (behind the plate), I realized that doing this was one of the things that made me happy and it had become an important part of my life. So I decided not to worry so much about the cancer or about the future. I was happy doing this and whether I was allowed just a few more games, or if I get many years of games to come, I will enjoy each and every one and be thankful for the health and strength to continue.

 New Season:

Last fall, as soon as I received the treatment and recovery details from my doctors,  I began signing umpire contracts for the spring highschool baseball/softball season. Now that season has begun and last night I worked my first game; freshman boys baseball at Sun Prairie, Wisconsin (vs. DeForest). I've worked with these coaches before and some players I recognized (from Jr. leagues perhaps) so it was a friendly atmosphere and everyone was excited about the new season and as happy as I was to be there. I quickly settled in behind the plate and even thought it was a bit chilly, I felt very comfortable and happy to be back.

The game went very well. There was good pitching on both sides and we easily got the game in before dark (my strike zone may have encouraged hitters to swing the bat but that's common this early in the season).


New concerns:

Willy Makit (remember that joke? - Betty Wont)

It's a matter of time. I have to be at the ball park at least 1/2 hour before the game starts (some require a whole hour). Many schools I work for are around 1/2 hour from my house. A typical 7-inning baseball game lasts around 2 hours - but can run longer. Three hours between trips to the bathroom pushes my limits at this point in my recovery. My new bladder isn't nearly as large as the old (and much harder to hold when it suddenly gets full). So I was a little nervous about this game. It was my first test to see how long I could go under a game situation (all those ups and downs behind the plate or running around the infield).

The first thing I noticed upon my arrival at the ball park was that the porta-potty (usual for this this field since it's some distance from the school) was nowhere in sight. So I drove up to the school and talked a janitor into letting me in so I could go before suiting up for the game. This gave me another 1/2 hour. All went well through the game and about half way through the 6th inning I began getting the signals that my bladder was full.  I really had no problem holding till the game was over. Squatting behind the plate didn't help and probably made these signals come before they normally would because once the game was over I had no problem getting back home with no more signals at all. This game lasted 2 hours and 15 minutes. So with time before and the ride home I was easily able to make over 3 1/2 hours.

I feel good about this and expect it will improve with time and conditioning. Bring on the double headers.....

Help me make it through the night

First and foremost, I'm not whining! If I sounds like I'm whining please slap me. I'm posting the following for information only and in no way am I less than completely thankful for what I have. 

Going to bed used to be the reward for making it through another day. It was a welcome escape from the work and worry where I could shed all the aches and pains during the night and awake refreshed and renewed. It was something to look forward to. Now it is something to dread. What will happen when I close my eyes and drift out of consciousness? Will I wake up in an hour drenched with sweat? Will my pads and underwear be heavy and soaked with urine. Will I need to struggle, half asleep, and change the sheets. And how many times during the night? I remember these nights when our kids were little. I remember trying not to be mad and trying to be supportive because I could imagine how embarrassing it was for them. I don't need to imagine any longer. I now know this embarrassment first hand. No, I don't look forward sleep - not like I used to.

Night sweats: 
These lasted for about four months from the time of surgery. I believe they are psychological residuals of the sedatives given during the surgery. Perhaps my subconscious reliving the pain it 'felt' during the surgery - even when my conscious mind was asleep and oblivious to the traumatic pain. These sweats were very frustrating because I would wake up, shortly after going to sleep, completely drenched with sweat. Sheets, blankets, pillows, and any night clothes were also soaked with sweat. It didn't seem to matter whether I had covers on or just a thin sheet. These night sweats only lasted about four months and I was very glad when they finally stopped.

Bed wetting: 
(Copied from Calendar/Journal for April 2, 2011)

"Nights are still hard. I'm not getting the night sweats anymore but I still have to wake up every two hours or so to pee. The hard part is not so much the waking up - I'm used to waking during the night - the hard part is getting up. Don't roll over and go back to sleep. It's amazing how easy it is to rationalize laziness when you just want to get back to sleep.

"And once I do get up and go to the bathroom, it's harder to pee. There doesn't seem to be anything there unless I really push (sort of like standing up). And If I give up and don't go, I seem to just go when I get back to sleep and then I wake up with a wet pad. More fuel for the rationalization process.

"If I do go, the stream is not very full so it's hard to feel it. I usually don't have my hearing aids in so I can't hear it. So it's hard to tell if I'm going AND it's hard to tell when I'm done. With this new bladder the act of peeing is a process of alternating between pushing (bearing down with diaphragm muscles) and relaxing (either sitting up or leaning forward) until no more comes. So you can see where this might be a problem.

"Also I think gravity plays a larger role in this whole process than it used to with the old bladder. When I'm laying down, things don't work as well as when I'm upright or sitting. The Neo-bladder doesn't fill up in the 'normal' way so it may not respond to attempts to drain it. Or maybe it falls under the whole continence issue. Maybe whatever my body does to "close the drain" while I'm awake doesn't work when I'm sleeping so the bladder never fills.

Working on it: 

I take heart in the fact that the night sweats have stopped. I believe that the problems I'm having with contenence will improve with work. And my body may 'learn' how to control some of these things with time. There are a lot of 'new' things going on in there, and my mind (concious and subconcious) has to resolve these changes and continue with the healing process. Our kids had new things going on and they're minds and bodies figured it out. It just took a little time, and a little patience.

Just Happy

Sometimes, lately, I get this happy feeling - just out of the blue, you know? For no particular reason and without anything else going on. I can just be standing and looking out the window. Or walking in the yard.

It's not even 'happy'. No, that word doesn't do it justice at all.

Satisfied, content, at peace? No, not those either - but they could be part of it.

Ecstatic, thrilled, overjoyed, euphoric?  Those are other words that may be in there too, but they don't fully define it either.

It's a little like the feeling that I just aced an exam or wrote a paper that was dead on the point and now I'm just waiting to get it back so I can see the superlatives written by the grader (I will be so disappointed if there is merely an 'A+' grade). My triumph requires a response in kind. (but I digress).

This feeling seems to sit just under the surface of my consciousness and I only notice it at random times when it just pops up and says; "hey". 

There's no rhyme or reason. But it's nice when it happens and I just kind of think - wow!

Finally feeling fine.

Feeling fine!
I've met with my doctor again for another series of blood tests and follow up on my condition. I have now completed a 10-day course of Cyproflaxin antibiotic to treat a slight swelling in my left kidney and to knock down these fevers which I've been having. The fevers stopped two days into this treatment and my blood counts were slightly better. I am to continue taking Iron Sulfide tablets for anemia (low red blood count) and one-a-day multi-vitamins to help build up my energy levels. We are very happy with all this and will meet again in a month for another check. 

Looking up: 

It no longer hurts me to travel in the car (jostling of my gut from the cracks in the road ), my fevers are gone, and the night sweats are either much milder or completely gone (on any given night). 

I have been walking for exercise nearly every day (even these really cold days) and I have worked myself up to being able to do a mile with no difficulty. This is a huge boost to my spirits as I only have a month to get ready for my  highschool baseball season. I am now anxious for the snow to melt so I can begin riding my bike again.

Depressed?
During the meeting with my doctor - at the end, after covering all the physical progress - he asked me if I was having any spells of depression. I said; "No, none at all" Quite the oposite, actually. I am very happy and content with the overall success of this treatment and feel that the challenges I am facing are an incredibly small price to pay. And when taken in context with all that has happened to me - all that has been accomplished in order to save my life - quite insignificant.

Three Months After Surgery

Surgery Plus Three Months
Everything is healed now. The new bladder seems to be working. I have good control during the day (one of the 90% according to my surgeon). I am really not sure about the nights because the night sweats have been waking me up so often and I just go while I'm up.
Basically, I'm feeling good and I've started walking to build up my endurance and strength. I still don't feel back to normal and it hurts to ride in the car (bumps and cracks in the road).

I have seen my doctor - and he has seen me. 

After my Oncologist gave me a clean bill of health (cancer-wise), I returned to my regular doctor's office to talk about my remaining problems: night sweats, fevers, and fatigue.

He is very concerned about the fevers which are now spiking (between 99 and 102) every day around dinner time. He walked into the exam room and the first thing he said - after 'hello' - was 'you look anemic'. We then proceded to talk about the blood tests (including blood culture) and the CT scan results. He said there was a slight swelling in one kidney and this was a good candidate for causing the fever. All the blood tests were negative except for a borderline hemoglobin and slightly reduced kidney function.

He put me on a 10 - day course of Cipro antibiotic and started me on Iron pills and One-a-day vitamins. Hopefully this will knock out the fevers and give me some more pep.

He's not so concerned about the night sweats and says that they can be caused by just about anything. I assume he means, let's clear up this infection and then worry about the lesser problems.

You give me fever.

Last night's fever of 100.0 doesn't seem like much but I'd already taken two ibuprofen for a headache (crick in the neck) that I seem to be getting more often now too. 


For the past two weeks I have been geting a low grade fever (99 - 102) every evening around supper time. I take two ibuprofen and it goes away in about 15 minutes, not to recure again until the next evening.  I've learned that two aspirine have no effect (because I tried it one night and I had to wait four hours - with the fever - to take two ibuprofen.)

My doctors are a bit more concerned about this than they are about the night sweats but they still don't seem to know what to do with it. They keep taking blood cultures (that come back negative) and the latest was to send me back to my Oncologist (who just sent me back to my doctors saying my cancer was cured and the fever must be a blood infection).

I had thought the fever may follow agititation of my lower abdomen (riding in cars or walking tends to irritate whatever is down there). Now that I'm trying to walk at least a mile a day (to get back in shape for baseball) I figured the fever would start spiking every day as well. And it has. But now it even spikes on the days I don't walk.

Oh, for a dry night (not what you think).

Last night I woke up about an hour after I went to bed and I was soaked with sweat. My shirt and pajama pants were soaked as were my sheets and blankets. My hair was dripping wet and there was water running off my face. This was a night sweat and it's been happening to me at least once every night since I had my surgery (there have been a few dry exceptions). Most are not this bad. Most only wet my shirt, the sheets, and the pillow and I can change them and get back into a fairly dry bed.

But this is getting pretty old now and I can't imagine that it's normal post-surgery. For a while I thought it was my subconscious re-living the surgery or some residual effect of the anesthesia, but it's going on three months and nobody I've talked to has had this coming out of surgery.

I've seen (and been seen by ) a lot of different doctors since the surgery and I've told every one of them about these sweats. They type it in their notes and go on with the examination (listen to my lungs and heart and press around my abdomen and ask if it hurts). Then they send me on my way.

This never happens when I take a nap during the day (some are 2-3 hours these days). Nor does it happen when I get up at night and fall asleep on the couch (because the bed's too wet).

It doesn't matter whether I'm warm or cold. I can be under all our blankets (we keep our bedroom cold) or just a single sheet.

I'm told it sounds a lot like hot flashes - but this doesn't have the 'hot'. I don't get hot - I just sweat.

Something's happening here...

... What it is, ain't exactly clear.

Things have been going along pretty smoothly with the recovery but a couple weeks ago I was having more problems with endurance and energy. I could go for a few hours but then it was like hitting a wall and I had to stop for a nap. I brought this up at my two-month meeting with my surgeon and he said I should see my regular doctor about this one. My doctor was booked up so I got appointment with the on-call doctor. One thing lead to another and before I new it I was headed for the ER to check for blood clot or heart attack.

The ER doctor couldn't find any evidence of heart attack or blood clot from either the EKG, x-ray, CT scan or blood tests - but he wanted to admit me anyway.  I should have said, "NO". But I didn't and I spent the next three days in the cardio ward of the hospital; feeling totally silly and very, VERY healthy.

While I was there, they ran every test they could think of: Stress test with pre and post scans. Heart ultrasound. It seemed like everyone on the hospital listened to my chest and heart. They kept a heart monitor on me 24/7 and every now and then brought in stacks of printout showing; ".. nothing unusual". They brought in specialists and scheduled consults and in the end all they had was something called a Sed Rate (ESR) that was too high. So they reluctantly sent me home. The good part is that now I know my heart and lungs are in tip top shape. Not a bad thing to know.

A high Sed Rate is a non-specific indication of inflamation somewhere in the body. Antibodies attach to the red blood cells causing them to clump and when the blood is placed in a tube, these clumps of blood cells  settle out faster than individuals.

I have seen my regular doctor again and been tested again. The ESR has come down but is still above normal. I have also been having occasional bouts with chills and fever (99 - 101 range) that worries him and has led to more blood and urine tests along with a full abdomal CT scan (first since surgery). AND a follow-up visit with my Oncologist (this was supposed to happen about now anyway so I'm not too worried by it).

MY concern is still almost nightly night sweats - sometimes 3 or 4 times a night. These are really a pain but they don't seem to concern the doctors. Another one of my theories that hasn't gotten much traction with doctors is that all these problems seemed to follow the removal of that second catheter. I worked as a microbiology tech for many years and think I understand sterile technique. Removing that catheter amounted to pulling a rubber tube that had been inside my bladder, through my gut space and out the hole in my side. Who knows what intestinal organisms might have stuck to it from those still lurking around in my neo-bladder. Who knows what it might have inoculated as it passed through.  Well, I'm not a doctor.

But I really can't worry too much about this. I've decided that my job is to get myself back in shape by starting to do the things I would normally do. Like splitting wood, clearing snow, walking, bowling, and exercising. Maybe umping a game or two at our indoor baseball park. After all, I have less than two months before I need to be in shape to outrun a 14 year-old from first to third base on a tripple.

How it works (Part ll).

Progress with Training Myself to Use This 'New' Body. (Part II)

It's been a month since the removal of the first (Foley) catheter (December 6, 2010) and since I first had to take control of things. I retained the second (backup) catheter for another TWO weeks so I could sleep through the night without having to get up every hour and push.

More than just a Neo-Bladder.
The Neo-bladder tends to steal the show because, although it is quite common in medicine, it is not very widely known about in society. Because of this, and differences in operation that I have mentioned before, I have concentrated mostly on peeing - and the problems (and triumphs) related to learning how to pee all over again. I had a bad week between Christmas and New Years where my kidneys and my intestines reminded me that they have been profoundly affected as well. This surgery effected my bladder, yes, but it also took a chunk out of my intestine and relocated - and drastically reshaped - that piece with all it's blood supply, nerves, connective tissue. Moved it down in my abdomen about a foot. Then they had to reconnect the two ends of my intestine, which must have involved some re-routing and repositioning nerves, blood supply, and connective tissue (and possibly reorienting things in my abdomen so I may need to use different muscles to 'push'. )

This surgery removed my prostrate with it's blood supply and nerves along with some lymph nodes (who can't spare a couple nodes). Even though the surgeon practiced minimal invasive techniques and nerve sparing procedures, there is a small probability that my sex organs have been effected.

There's a reason this surgery took five hours.

Be that as it may....

Since the art of peeing is what has changed the most let's talk about that. (we've all had bouts with diarrhea so there's nothing new there)

NOTE: I have never worn - nor do I intend to wear - a diaper/depends. For this I am extremely thankful.

After the first week without the Foley catheter I stopped using maxi-pads during the day. I was comfortable in my continence and had no problem getting to a bathroom before that little leak fealing tells me my bladder is probably full. I do wear a couple folds of TP or tissue as insurance. As far as I can tell the exercises (Kegels) have been building up the muscle tone of that sphincter muscle so that I don't have to conciously 'hold it' as my bladder fills.  As the bladder fills the pressure builds to a point where the sphincter allows a brief leak - which I feel imediately (somehow) and I can now hold it by contracting some muscles down there with plenty of time to make it to a bathroom (usually counted in minutes). This is great progress because for the first few days when I would feel this leak I had to get to a toilet and was lucky if I could hold it till I was seated all the way. Exercises work!


How to Pee:

From the very beginning I haven't 'needed' to use the hand pressure on the outside of my abdomen. Most of the work is done by gravity - after sitting down, on the pot, I just lean forward a little, relax, and let go. I am rewarded with pretty good flow. I have found that I can use abdominal muscles to apply pressure forward to squeeze the bladder, thereby providing all the help needed to help the flow and complete the drainage. I think George Burns said that to an old person, a good pee is better than sex. I'll hold off judgement on that one but I have to say, at this point, a good pee is very nice.

I get the feeling my new bladder has multiple "chambers" because I can relax and push until nothing more comes but then after I stop pushing for a few seconds I can relax and push again and get out a bunch more. Like the top chamber is using gravity to drain into the lower chamber which in turn is in front of this muscle ( or something like that). If I don't get a good second push I will try the manual pushing down with my hand and that usually gets a little more. Usually after 3 or 4 pushes I have it all.

Where do I stand on sitting:
I have been told all along that from now on I will have to sit to pee. Sitting is certainly fine with me - it's a very common thing to do - but in the back of my mind I think about how much time I spend tending my developing woodland (farm) and how it's a lot easier to pee on a tree (standing) than to drop trow and squat (especially in the winter). So the other day I was taking a measurement to see how much larger my neo-bladder had become and I thought I'd try standing. It worked just fine. I got nearly 300 cc's (big increase from the 100cc's the first week). But it did take a very large effort - pressing with those abdominal muscles - so I'm not sure I'll do that again for a while.

So the sitting requirement is not strictly true. But it is far easier to pee sitting down. The difference is when sitting, gravity takes care of most of the work, the muscles just help out a little. Standing; it's all muscle, no help from gravity.  Maybe that will be easier as I heal and get stronger, but for now it pretty much just makes things hurt.

Help me make it through the night: 

When I was first rid of the Foley Catheter and had to control things on my own, I began the pushing and the kegeling in ernest. By the end of the day I was very tired and sore down there so it was a welcome relief to just plug the Supra Pelvic Catheter (SPC) into a bag and sleep through the night. This Catheter ran from somewhere in my neo-bladder to a hole in my side next to my belly button. It apparently created a low pressure alternative path for the urine to move out of my bladder and I never had to go the normal way (unless the SPC plugged in the night).

I kept the SPC for two weeks after the Foley was removed and after two weeks I was more than ready for it to go. It was beginning to hurt (where it was stitched in place to my skin). My muscles were no longer sore, and I was ready to start taking control of my future.

The SBC was removed on Tuesday, December 21, 2011in a quick office call where a nurse deflated the balloon (holding it in my bladder),  cut the string that was holding it to my skin and pulled it out. Nothing to it. A small dressing over the hole in my stomach (it will heal surprisingly fast) and call us if there are any problems. 

The first night I had quite a bit of trouble getting my usual good flow and I went through a couple maxi-pads (nothing serious). It seemed like I couldn't get any pressure to push out the pee, I thought maybe the hole from the catheter hadn't healed shut yet.

The next day was pretty much normal and that night seemed to go much better. I was setting an alarm for every 2 hours in order to try to match my daytime 'range' but it didn't work very well. I couldn't hear the alarm and everyone else in the house could. The other problem with alarms is that they tend to go off just when I'm getting to deap sleep. After a couple days I was suffering from sleep deprivation so I decided to quit the alarms and rely on my normal insomnia to wake me up. This seems to work just fine and I'm not so tired all day.

So, nights aren't really much diferent than days. I wear a pad just to be safe but I'm waking up more than often enough. Some people say to not drink as much at night but I don't see that this makes much diference (day or night).

Now if I can just get rid of these night sweats....

A Trip Too Far

Six plus hours in a car may have been too much for my Neo.


Every year we make a pilgrimage to spend Christmas with family in North-Western Wisconsin. It's a tradition. And this year is special because we were joined by our Son and Grand Kids from Chicago. Most of our family hasn't even seen our youngest grand-daughter so we're all excited about the trip.



Fever and Chills:

This hit on Christmas day and took me right down. I was fine during the afternoon and enjoyed the fabulous Christmas feast. I shared the excitement of opening presents and just when people were starting to have fun I was hit by chills and uncontrolable shakes. I begged out of the rest of the evening and drove the short distance to my Sister-in-laws where we were staying. I took a couple tylenol and tucked myself in to the very comfy, warm bed. The shaking soon stopped and I went to sleep.

Emergency:

Maybe this 6 hour trip was more than I bargained for. I've overdone before and I do pay for it. Sunday afternoon Debi convinced me to go to the ER at St Croix Falls (~ 25 miles away) - not a hard sell since I was running a fever something close to 104 and feeling pretty bad.

They took me right in to the ER when we got there and began probing and testing. They took blood and I managed to pee - I learned that I needed to be on a toilet for this to work - no chairs or beds. I took this as good news.  They wanted to admit me over night for IV Antibiotics and fluids. I told them I wasn't a normal human and they should take the lab results (at least the urology results) with a grain of salt. I gave them the number of my health provider's 24 hr On-call service so the doctor could talk to someone on my urology team. He came back and said I could leave if I promised to see my doctor on Tuesday. They gave me a big pill to take right there, and a prescription for a weeks worth of antibiotics ( Cypro). This whole process took over four hours but we watched the whole Packer game right there in the ER room, on a nice HD-TV, so we didn't mind.


Back home in Madison:

I slept most of the way home while my wife and son drove. We made an appointment to see my urologist (team) for Tuesday (day after we got back). All the doctors were most worried about my Kidney function. My Creatinin was 2.1 (above normal range ~1.3) so they did an ultrasound Wednesday. No word so I'm assuming either there's nothing wrong or there's nothing they can do till I've finished my current course of antibiotic (Ciproflaxen).

Night Sweats: 
The peeing is going fine - over two hours during the day with no leakage - but I can't tell how long I can go at night because I wake up every hour soaking with sweat. So I Pee while I'm changing PJ's or bed cloths. This is so frustrating. I can lay under only a sheet and I'm still soaked. I believe my subconscious is remembering the surgery.  Or it could be my body fighting off the infection. For now it means I don't have a fever so I'll take that.

Meanwhile I'm trying to catch up on my writing and sleeping. My appetite is better and I have no fever. My stomach is sorer than it's been for many weeks and Debi says I look like a great-grandpa getting around. I told her; "yes, I am pretty great" .

So I think things are going in the right direction once again.