Friday, October 19, 2012

Repeat of test showed improvement.

The repeat of the blood test for creatinin showed a drop from 2.3 to 2.1 so we're good for now. But I'm scheduled for another test in only 3 months.

Relieved? Yes we are. Thank you.

Sunday, October 14, 2012

Surviving a Neo-Bladder

I just got the results from my blood tests (we had hoped that this was all that was needed for my latest post-surgical checkup).  But the tests show that my creatinine level has risen from where it had been since the surgery to something a little higher. I will re-test in a week to verify and then my surgeon/urologist may want to meet and talk things over.

My friend called again to tell me he is still contending with tubes, nephrostomy bags, stents, fevers, antibiotics, office procedures, and hospital stays while the doctors scramble to solve his declining kidney function.  You will recall that we met when he was in the hospital recovering from this same surgery while I was recovering from mine. A few weeks ago he went in for follow up tests and his creatinine levels had spiked (much more than mine). [See 'Are You Kidney-ing Me?' blog entry]

Now that I have learned that my levels have started to go up - after being steady for 2 years - I am a little scared. I've looked around the Internet for information on kidney problems following Neo-Bladder and found a study which concluded that a rise in creatinine levels is normal after this surgery. [click here to view article] It also found an increase in occurrence of hydronephrosis (ie. problems with the kidneys).
"A relatively large number of patients developed hydronephrosis. Five [out of 31 patients studied ] were related to stricture of the distal ureter and another with suspected upper tract recurrence. Our stricture rate was 17.9%; most authors report a lower stricture rate between 1% to 8.5%..."
This study only followed 31 patients over one year period after surgery. It sites a lack of long-term data. I'll keep looking ...

I've already been treated for this in my left kidney and now I'm afraid I will need the same for my right. Well, we'll just have to wait and see.

Meanwhile, we're getting a great, soaking, two-day rain here in Madison, Wis. We'd have given a lot for one of these this past summer. This will help recover our reserves for next year's growing season.

Tuesday, September 11, 2012

Are You Kidney-ing Me?

I don't remember if the subject of kidneys came up in our discussions with the urologist before this surgery. If it had, I didn't think much about it other than the possibility that the cancer may have spread to them. And I was so relieved, when I heard the news that there was no evidence of cancer beyond the tumor that was my bladder, that I put kidneys out of my mind.

So when my urologist later concluded that my left kidney was no longer functioning due to a callous formation in the ureter following the surgery, I was shocked - to say the least. But both he and my regular doctor seemed to be pretty much unconcerned by this loss saying that I still had one good kidney and that was plenty for a body to live with; "You'll be just fine."

The other day I got a call from my friend; who I met in the hospital recovery ward after our neo-bladder surgeries (he had the same history and procedures as me.) He called to tell me that he had just gotten out of the hospital. It seems that during his regular post-surgery checkup with the urologist, his creatinine counts were way too high (an indicator of poor kidney function). They did tests and determined that his right kidney was swollen and that flow was severely restricted down that ureter. (He has had the same problems with his left kidney as I had and he is depending on his right kidney for nearly all his kidney function - same as me.) They immediately installed a nephrostomy tube and bag in order to drain the kidney.  While he was in recovery his temperature spiked to 102 so they admitted him to the hospital and put him on I-V antibiotics. After a couple days they sent him back home and have scheduled him for a stent from his right kidney to his neo-bladder.

I have talked about my fears in loosing my kidney function in previous blogs. My older sister died of complications from kidney failure so perhaps I am a little more sensitive to this possibility. She had fought rheumatic arthritis for many years and in the end it came down to a choice between pain and kidneys. She never let the pain slow her down and had many joint replacements so she could function as a teacher and a parent. She wasn't a good candidate for transplant because she still needed mega-doses of pain relief and a new kidney wouldn't last very long. (She wouldn't even discuss donation.) And when the kidneys go...

I am told that I would not be a candidate for transplant until I am some number of years cancer-free. This applies to my friend as well. So I pray for my friend's success with the stent.

I am about due for my next check-up and look forward to better news from my tests.

Friday, August 31, 2012



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. 

Tuesday, August 14, 2012


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. 

Thursday, July 19, 2012

Bicycle races

Whenever I see an adult on a bicycle, I have hope for the human race. - H.G. Wells

I try to ride my bike into campus at least three times a week. Campus is about 4 miles from my house and I can extend this another mile or two by riding the long way around a golf course. This gets me off the sidewalk on the busy street that leads to our house the short way around, and on to the quiet residential streets where the rich folks live (for part of the trip, at least).

I ride in the hot weather (the last few weeks have been sweltering in Madison) which is another reason to get up early.  And I ride in cold weather as long as it's above 30 degrees and the way is clear (last winter was mild and very good for riding.) I believe this keeps my body loose and my muscles tight. Not only is this good exercise but whenever I get a crick or cramp, or some other malady, it seems like a few miles on the bike puts everything back in order.

The destination of most of these rides is at the UW- Memorial Student Union.  I buy a small cup of coffee at "Peet's Coffee & Tea" and work on this blog or on my Treenut web site until the coffee runs out. By then I've either cooled off or warmed up sufficiently to climb back onto my bike for the ride home.

They say that the key to a good exercise program is to make it part of your routine. I have managed to do this mainly because I enjoy both the ride and the destination. Of course I can drink coffee and work on  my web site at home but why not do something a little different. Every ride is an adventure - some more - some less. The other day I was riding around some folks on the sidewalk. My attention must have been on these folks so I didn't see the small hole in the ground. It got me by surprise and I went down immediately. Luckily it happened so fast that I didn't have time to put out an arm to break my fall. Basically, I rode the bike into the ground. This was harder on the bike but allowed me to roll with the fall and not jam any joints or pull any muscles. Just a couple scrapes and bruises and my helmet saved my head once again.  I don't always go down so safely. Shortly after my surgery I dumped my bike while going around a corner and this time I did have time to put out my arm to break my fall. My arm, shoulder, and ribs were sore for over six months after that fall. 'Old guys' heal slowly.

This isn't the only 'adventure' that comes with riding. Other people are doing things. People working on their yards. Things are getting built, fixed, remodeled; neighborhoods are changing. Other people are going places; walking, running, riding. We exchange smiles and/or waves as we pass. It's not much but it does make you feel good. It builds your spirit. It's amazing how little it takes.

I think Madison is a relatively bike friendly city but my usual route doesn't take advantage of any of the numerous bike trails. Most of my route is on busy streets that have a bike lanes that run next to the parked cars. The rest of it is on sidewalks next to busy streets without bike lanes. Most people (drivers and pedestrians) do a good job of 'seeing' bicycles - with the campus and all the student bicycle traffic. But one quickly learns to ride defensively and to watch drivers' eyes. I haven't been hit by a car for about 20 years - knock on wood.  Riding in the city is dangerous, I guess, but I think I prefer it to riding in the country with it's miles and miles of just miles and miles. And I certainly prefer it to riding on a stationary bike in some fitness center or basement. Good god, talk about mind numbing.

For many years before I retired I rode to work every day. This is when I learned that having a destination made it easy to exercise.  I have tried nurture this idea of maintaining a destination in order to maintain this habit. And I believe that this regular exercise has been a great help to my recovery and continued good health.

Tuesday, May 22, 2012

Haunted House (part 2)

On change:
A couple months ago I overheard my wife talking to a neighbor about how devastating it was to watch me go through all this: the cancer, the chemo, and then the surgery (I haven't written much about this but I know it's true). She said that what saved her was the 'sudden' realization - after it was all over - that nothing had changed. I had been cured and all was right with the world once again. And this is true.
Around the same time I was visiting with our grand-kids' other grand-father (the first time we'd talked since my surgery). Many years ago he had barely survived a serious accident, and he said; "Everything has changed, hasn't it?" I said; "Yes, it has."


After a couple days at home in the city I once again made the journey to the Haunted House in the country. There were many more things to fix and I was anxious to finish. Having it sit vacant in the winter was both risky to the property and hard on our cash flow. But this story isn't only about fixing things (or cash flow). In the days I was away from the farm, I realized that I actually missed the place. I was glad to be heading back and I was looking forward to 'camping out' again, even for a short time.

I pulled in the driveway and everything was just as I'd left it. I unlocked the house and walked in to find the radio was still playing (my son lives in Chicago and he says it's considered a good idea to leave the radio on loud when you are gone to discourage burglars). The furnace had kept things at a chilly 55 degrees (it had not failed and nothing had frozen) and all my 'camping gear' was just as I'd left it.  (What did I expect?). So I turned up the thermostat and drove into town for lunch while the house warmed up.

While in town, I wanted to do some scouting; have a look around. It's been 40 years since I've really looked at this town and during that time many of the businesses have closed - driven out of business by big-box sores and national franchise restaurants. I have my farm account at the bank that is still in town (now a branch of a regional bank).   There is a nice restaurant where we usually eat when working on the farm. But what else is there? Two bars, a bowling center, convenience store/gas station, and the same churches we had when I was growing up. And there was a library where I could hook up to Wi-Fi  If we are going to move here we need to know what and where things are and one of the reasons I had for doing this was to get a feel for living here -  an immersion technique. While at the library I got myself a library card. What better way to connect to a community.

Sensory Deprivation: 

In the city we have access to Cable TV, Internet, and a telephone in every room of the house. We all have laptops and PDA's and are connected to Facebook, e-mail, web, etc. at all times of the day and night. The TV is turned on first thing when we wake up (or arrive at home) and turned off last when we leave (or go to bed). If I can't sleep at night, I turn on the TV and watch an old movie or old episode of a sitcom to put me back to sleep. This is the background to our lives; someone is always talking, singing, or playing music for us. We never need to be alone. We never need to be bored.

The Haunted House has none of these. No 'access' at all to the outside world - not even a newspaper. (I do have my cell phone but only marginal service in this area.) All I have in this house is a boom box  that sounds terrible in this empty house with the high ceilings and the bare wood floors. So after a day or two I just didn't bother to turn it on anymore. Better to have quiet than to listen to that cacophony of echos from speakers that were tinny in the best of acoustics.  Since the music sounded so crappy I tried listening to talk but I just found it annoying that they were intruding in my thoughts - and in my life. So the house was now quiet.

Well actually - not really. Because now that I'd shut off all this noise I could hear the sounds of the house, itself. Not haunted sounds but normal things like the sound of the furnace - it made a certain sound when it came on that was different from the sound it made while it was running, and then it made a shudder sound as it turned itself off. And the house had creaks and other little noises that I could barely hear (I wear two hearing aids that do only a fair job of making me hear) but pretty soon I got used to these sounds and even found them comforting. The house was 'talking' to me and now and, finally, I was listening.


One of the first things this house "told" me was that the refrigerator was running all the time. I put some water in the freezer to see if it would freeze. It didn't freeze so now I had to find an appliance shop and buy a new fridge. I thought about Craigslist (I've had good results with this for buying and selling in the past) but I wanted to use this excuse to shop around the area's stores (more immersion). First I checked out the local ReStore but they only had one, it seemed expensive, and it was already sold. We'd bought this refrigerator second hand. It had only cost a few hundred dollars but now it has failed after only a couple years. Maybe a new one would be a better bet. A fellow we used to  kind of  hang out with owns a small appliance store in the next town. He and I only kind of remembered each other but he did have a sale on some basic new models that were only a couple hundred more than the used. He said that maybe the Menard's could under cut his price but he offered personalized service after the sale. I like Menard's but I believe in supporting small business if I can. He delivered it the next day and took the old one away - easy-peasy.

Another thing that I noticed - that I wouldn't have known without living here - was that the yard light didn't come on automatically at night (it gets REALLY dark in the country.) In fact it didn't come on at all. Somehow when we had the wires moved off the old barn, the yard light had been disconnected.  I  was able to track down the wiring problem and reconnect the circuit so that it was once again controlled by a switch in the kitchen. From then on I kept the light on all night. I noticed that all the farms and most of the houses in the area had yard lights that stay on all night. And I know that they are controlled by a photo-cell to turn off during daylight. My photocell was apparently broken and to fix it I'd have to climb the pole and work ABOVE the power lines. This was NOT an option for me so instead I installed a timer in the basement to turn off the light if the kitchen switch is left on (like when I go back to the city).

Even now that I had a yard light, I still hung the sheets over the windows at night and left a couple lights turned on inside the house when I went to bed. I kept all the doors locked - day and night - and locked them every time I went out. One day my brother came to help me and he laughed at all my locks, my lights, and my sheets. He said; "Stuart, there's nobody out here." That night I didn't bother to hang the sheets and when I turned off the lights inside the house I realized that it wasn't really as dark outside as I had thought. With the lights off inside the house I could see OUT through the windows very well. And since it was actually lighter outside if there was anything (or anybody) out there they would have a hard time seeing in. Once my eyes grew accustomed to the dark I could see to get around inside the house just fine.  And since I was now used to the normal sounds of this house I was quite comfortable in this quiet (quote - unquote) darkness.

Free Time:
In all I spent the better part of the month of November in this Haunted House; alone and in a form of sensory deprivation (relative to normal). I tackled one project after another from my original 'list' along with the added things that the house told me about. 
Morning Walks

Because I was there all the time, I was able to take breaks from the work; during which I had time to do things like take walks up and down the road; picking up trash and 'checking out' the neighborhood.

New Snow
There were a couple mornings of new snow so I walked in the woods and studied the tracks (deer, coyotes, various birds, rabbits, squirrels, etc.) and looked at (marveled) the trees we have been planting for the past 15 years (in what used to be corn fields). I quickly got used to this 'time off' from working. It is a luxury I haven't had in the past because my time at the farm has always been measured in hours - not days - and I have had to work as hard and as fast as I can to get as much done as possible before I have to head back to -- well -- my life.

By the last week in November I could see the end of my projects and I was ready to put the house up for rent again. I took out an ad in the regional 'advertiser' paper - where I'd found renters in the past. And this time I posted it in Craigslist with a couple pictures. I'd planned to head back to the city while I did the initial screening of prospective renters. I never know whether I'll get any takers, I was starting to miss my wife, and I value her instincts when it comes to people.

But the morning I had planned to head back to the city I woke up to find the house was colder than normal. As I lay there, under the warm covers, I could hear the furnace doing it's startup sound but after a minute it would go quiet again. Something was wrong. I checked the thermostat and went down to take a closer look (and listen) at the furnace. I double checked the fuel tank. There was something wrong with the furnace.

It was Saturday morning so I expected all the service departments to be closed for the weekend. I called the number on the sticker on the side of the furnace and got a recording that, yes, the service department is closed and I can leave a message and someone will contact me ASAP. The house was cold and I was worried about it freezing up so I called my former renter to ask he they had ever had this problem. He said; 'No', but he knew a guy who was very good at furnaces and did this kind of work-on-the-side. He'd give him a call and have him come out if he could. About an hour later - as I was driving to get lunch - I got a reply (from the recording) from the technician who was currently sitting in a deer stand with his son. I apologized for the interruption and described the problem. He proceeded to describe what was wrong and very carefully 'walked' me through the process of fixing it - for when I got back home. No charge. When I got back to the house I opened up the furnace and but it was not the configuration that he had described. I was just closing it up when the second guy (called by my former renters) walked down the basement stairs. After checking the furnace he said the basic problem was what the first guy had said but this was a little different model. He didn't have the part but I could a generic version it at the hardware store in the next town. He was on his way to another job so he couldn't run for the part but he was fine with me replacing this myself and left me his number in case I had any problems. Again, no charge.

So after a short drive for a $45.00 part, I put in the new part and the furnace fired up perfectly. It's amazing how good that warmth makes you feel. Even thought the generic part worked, it didn't fit exactly the same as the original. This made me nervous so I used this as an excuse to stay a couple more days - just to assure everything was okay. On Monday morning I drove to the HVAC store - from the sticker on the furnace - and showed the service guy what I'd done. He said the new generic part was actually much better (more reliable) than the original and everything should be just fine. So the whole furnace failure on a weekend only cost me $45.00 to fix. How lucky it was that I was there when this happened; nothing froze and no pipes burst. And even if there would have been renters, would they have had to pay full price (time and a half?) for a service call on a weekend? Most likely.

I was starting to feel a real attachment growing - both to this house and to this area. It was hard to show the house to perspective renters because I knew it meant that I would have to leave. I had only lived there for a few weeks but I have more of a stake - more attachment - than ever before.

This house will still haunt me but I am no longer afraid. The prospect of moving to this area will haunt me more now that I've spent some serious time here. And I'm no longer afraid of that either. This is a subtle change but, like a tree seed planted in fertile soil, it will grow into larger changes to come. And it is now the season for this tree and for this change. This is a beautiful season and it is time to stop being afraid of haunted houses.

Monday, April 16, 2012

This old house

One of the things that is nice about living in an old(er) house: it gives you projects...

It's important to me to feel needed, serve some useful function, and have a reason to get up each morning - a reason to live. I own an older house, and I am of the 'handyman' persuasion, so this isn't a problem.

Our older house has an addition that was built over a crawl space using a wood post foundation. This spring we noticed a small crack in drywall that looked like it might be caused by the settling of a corner post. (I had previously replaced the center post, that had started to degrade, before adding a deck because it would be hard to replace later.)

I called diggers hot line, got out my shovel and wheel barrow and dug in. As soon as I pulled away the top layer of dirt I could see how much of the outer part of the post had been worn off by decay. It seemed like only a 4 X 4 left holding up that whole corner - if that.

It took me three days of digging to get down to the concrete footing. I worked slowly to save my back. The ground was plenty wet and if it wasn't for all the stone in the mix they used for back fill, it would have been easy digging. As it was it took a lot of patience and shovel wiggling.

Soon the hole was large enough to fit a sister post with a house jack. A couple turns on the jack and the weight was off the post and it was easily removed. Half a turn more to make clearance for the new post and then a "pop". Debi came running out of the house. "What are you doing!" She exclaimed; "The house sounded like it was breaking." Not to worry, I assured her, it's just un-settling a bit.

The new post was carefully cut and wiggled into it's spot (I added a rubber piece between the concrete footing and the post to prevent any water wicking in from the concrete. ) A couple back turns on the jack and everything is solid and tight once more.

It took far less time to back fill the dirt. I had some left over but this will be added as things settle in. I'll wait till then to replace the skirting.

During these projects my wife keeps saying things like; "Are you sure you know what you're doing?" And; "We could hire someone to do that." But maybe she doesn't understand how important it is for me to have these projects.  Yes we could hire someone to do it faster but what I lack in speed I make up for in quality and attention to detail. (insert rant on lack of quality workmanship now-a-days.) I have a stake in the outcome - I have to live with it.

I'm an old(er) guy with an old(er) house and this arrangement works out fine for both me and the house. For thirty years I had a career in Technical Support. Feeling needed wasn't a problem then and - since I retired - this old(er) house helps it not be a problem now.

Friday, March 9, 2012

Another Six Months

It's only a routine six-month checkup; ultrasound the kidneys and x-ray the chest; check the blood and urine; then meet with the surgeon/urologist to discuss the results. Why am I so nervous? Why am I scared?

I'll admit it; I'm neurotic. The x-ray tech keeps me for a second set of chest x-rays and when I leave she says; "Good Luck." What does she know? What did she see? The ultrasound takes about 20 minutes with full bladder and another 10 minutes with empty. Did she also see something? I've seen the results of my blood tests and my kidney function indicators are still out of spec. I've had some pain in my back on the left side - the side of the kidney that was having problems a year ago. This could be muscle strain from a recent fall or an after effect of the train trip we just took to Arizona and back. But it is a pain where that kidney is located (I've learned this location from past surgical procedures. )

Good News!

So my wife and I wait in the doctor's office for him to come in and give us the results. She thinks I'm silly to be worried. The surgeon enters with a big smile and he says; "Everything looks good." I was silly to be worried. I'm doing just fine and there's nothing to worry about. There is no sign of cancer cells in the urine and no sign of cancer anywhere else. Oh, what a relief!!


But I don't let him off that easily. What about the back pain? What about the elevated creatinin? What about my left kidney? So he sits down at the computer and says; "let me show you what's going on." We look at the scan of the right kidney (normal) and then the left kidney (which shows a large dark spot that he says is the swelling that is still present). He then brings up the scan from 6 months ago which looks pretty much the same - and the same as the scan from after the stent and the breaking of the scar tissue that was blocking flow from the left kidney at the ureter connection to the neo-bladder. This is evidence that damage has been done to that kidney and, even after flow was restored, the kidney has not been able to recover. He says that kidneys don't like having their flow blocked (either this way or by kidney stones lodging in the ureter) and the damage can be permanent.

He went on to say that my blood tests have shown no significant changes in kidney function since this blockage was removed. This means the right kidney is working just fine and is probably doing all the work - which it is perfectly capable of doing and many people live long and healthy lives with only one kidney.

"Could this damage have been caused by chemo?" I know chemo can be hard on kidneys and I have been thinking about whether it was the wisest decision to opt for chemo when it wasn't absolutely necessary (this is called prophylactic chemo). He said; "No, this was definitely caused by an undiagnosed blockage from the formation of scar tissue after the surgery." And this isn't the first time he has told us this but, you know, it takes a while to accept. But it's starting to sink in to my thick skull. I only have one kidney. Live with it.

"Could the scar tissue have re-formed and that blockage still causing problems?" That's certainly possible but not likely since the levels (kidney function indicators) in your blood did not change when we had the stent in place and there was maximum flow from that kidney (they used a die marker to check for flow both before and after the stent which showed the flow was blocked before and full flow was restored by the procedure). And the levels have not changed since the stent was removed. If the pain persists they may try the stent again and if that relieves the pain they may remove that kidney.

"So what happens if the other kidney fails?" He assures me that I'm in very good shape and the right kidney is functioning just fine and there's no reason to believe it will not continue to do so. My current levels have been constant and they should be considered to be my new normal.

"Can I keep the neo-bladder with only one functioning kidney?" I remember him hinting - in past discussions - that they don't like to have a neo-bladder where there is only one kidney. He said if we start seeing problems with the remaining kidney they may want to try a catheter for a while to remove any restrictions to flow.  And if that works, they will probably want to remove the neo-bladder.

"What about transplants?" They won't transplant when you have one functioning kidney. They also require a certain number of years cancer-free before transplant. Again, he says, this is such a remote possibility and so far down the road that I shouldn't be worried about it now. I am doing great and all indications are that I will continue to do fine.

He asks me how I am managing with the neo-bladder. Am I still having trouble at night? How am I during the day? I have always been fine in the daytime and I am constantly getting better at night. Still a little leakage but not more than a "maxi-pad" can handle. I get up a couple times at night but usually there's not much to go.  

"Is it alright to really bear down - will this cause reflux up into the kidneys?"

So, he says he will be contacting me in another six months to come in for tests. Then they will probably just call me with the results.  I'm doing just great and keep up the good work - or something like that.

It's all good.

On feedback.

I've been doing this blog for a year and a half. It's the first blog I have ever done so it's been a learning experience for me; in and of itself.  I have looked at blogging as a tool to help me work out issues and organize thoughts. When I sit down to write I don't think of any particular audience to whom I may be writing - I'm not writing to anyone in particular. When you write to someone in a letter, email, or Facebook message, you have to temper your words and thoughts so that they don't offend, or confuse, or make them think you've gone crazy (or off the deep end.)  So, in this Blog, I write to (and for) myself.

Well, if that were true I'd just keep a journal and not publish this blog. So, yes I do think of other people reading this (at least in some point in the process). I don't really believe anyone would read it, however, because there are just so many words being written these days that I can't imagine anyone having the time or the interest in reading mine. Everyone, it seems, has something important to say. I do, in fact,  temper my words in case someone who knows me stumbles across this. And there are some subjects I don't talk about in case my nieces or nephews (or grand kids) may read it. I know, at this point in my life, why should I care what other people think about me? But I do.

This troubles me a little because I think it detracts from the value of the blog. I am getting better and I continue to strive to improve. I no longer worry about turning off prospective employers or alienating prospective constituencies (I am growing more comfortable with retirement and have never aspired to public office). So to these I say; "really, what's it to ya".

Actually, the closest analogy I can think of is that, in blogging, we feel as an actor on a proscenium stage with the audience behind the Fourth wall. This works on my head in a couple ways: The audience is 'hidden' - at least from my consciousness - which is freeing (but I still know that there is an audience and that it's my job to keep them interested - give them they're 'money's worth'. But it also means that I have no way of knowing if the theater is empty and I'm just writing to hear my own voice. This also plays with my head ( I have to admit).

Enter the 'comment'. Up until now I have pretty much ignored the comment field in this blog. I have received feedback both by phone and by email (and in person) and most of it has been very positive and supportive. Many people have told me that they find the process of posting a comment both confusing and non-intuitive and most have just given up. My curiosity has finally gotten the best of me and I tried to comment (actually post a comment to respond to a comment to one of my blogs). I couldn't make it work at first and after a couple days of trying, and looking at other sites, I changed the settings to open a pop-up window for the entry of the comment. Now if you have a Gmail account (at least) you can post a comment as someone other than 'anonymous'.

I like comments and other feedback to my site. So far I don't think it's affected my primary mission in keeping this blog. When and if you decide to comment please know that my ego is rather fragile so please be kind.

Also, I do have this blog configured to send me all comments so that I can screen them before posting (via email). So if you want to contact me without posting just write a comment and note that it is private and you don't want it posted to the blog.


Wednesday, January 11, 2012

Exercise- The Latest Wonder Drug for Cancer Patients

I just received the following from a reader.  I think it fits right in to what I've been talking about so I've included it here.

Exercise- The Latest Wonder Drug for Cancer Patients. by David Haas

The leading UK charity, Macmillan Cancer Support, recently released a report echoing previous data linking the benefits of exercise to cancer patients. Early studies involved patients. Since then, additional studies have expanded to include patients undergoing treatment for just about every major form of cancer. A similar study by the UCLA Department of Integrative Biology and Physiology found that any type of physical activity may be beneficial for patients at any stage of cancer, from initial diagnosis through remission and recovery. The latest wonder drug for cancer patients may be exercise.

Recommendations on the exact amount of exercise necessary to be beneficial vary. One recommendation is 150 per week. However, most medical experts cited in the studies, note that any amount of regular exercise can help cancer patients be more receptive to treatment. A study involving prostate cancer patients found that the risk of dying dropped 30 percent among patients exercising on a regular basis. Breast cancer studies found a 40 percent reduction in recurrence. Studies show exercise can also reduce the risk of developing some forms of cancer, such as colon cancer. Exercise is also helpful in reducing some side effects of cancer treatment, including fatigue and depression. Exercise has a positive effect for patients undergoing treatment for rare forms of cancer as well, such as mesothelioma. Some patients experience a reduction in symptoms when mesothelioma treatment includes regular forms of exercise.

The exercise a patient gets doesn't have to be anything too strenuous. Even tasks such as working in the garden, going for a brisk walk, yoga or swimming can count as exercise and be equally beneficial. The Macmillan report found that more than half of health care professionals, including nurses, doctors and general practitioners, fail to inform patients of the potential benefits of some form of physical exercise during the treatment and recovery process. Those endorsing exercise for cancer patients point out that an exercise routine can be modified during different stages of treatment to fit a patient's needs. Some hospitals and medical facilities organize exercise groups specifically for patients. This provides added support along with the health benefits of regular physical activity in comfortable setting.

It is important to understand that exercise is not meant as a replacement for a patient's existing course of treatment, nor is it implied that exercise can cure any form of cancer. Patients should check with their doctor prior to starting any regular exercise routine. According to the American Cancer Society, more than 11 million Americans have some form of cancer. The American Cancer Society also advocates an active lifestyle to help reduce the risk of cancer and during treatment to lessen the physical strain during the recovery process.

David Haas is a cancer patient advocate and the awareness program advocate for the Mesothelioma Cancer Alliance. He researches and writes to help people going through cancer. You can find more of his writing at

Monday, January 9, 2012

Cold and the Frozen Tundra

In 2012, I welcomed in the New Year with a head cold and/or sinus infection. Normally I can beat these in a day or so by basically going to bed and sleeping until I'm better (I hate walking around dripping.)  But this time it hung on for nearly a week. No, I didn't stay in bed after the first day or so - it wasn't working so I gave up. I'm fine now and back to my normal routine but this brings to mind something I've been thinking about.

At my last checkup I was talking to my doctor about the problems I've had with my kidney function and with this anemia.  I asked him if loosing an organ like the bladder - even replacing it with something that functions the same - doesn't make the rest of the body more prone to problems. He answered; "Yes,  definitely." I asked this because I don't like things that don't work properly - including my body. I have always come away from physicals with an absolutely clean bill of health (even my draft physical where I might have welcomed something less). I am now 62 and I don't take any pills and I never have. Is this pure luck? Maybe, but ten years ago my doctor told me my blood pressure was too high and I'd have to start taking pills. I immediately changed my life style. I changed how and what I ate (and drank) and I started riding bike to work every day.  In the first month I lost 30 pounds (and I've kept it off). My next check up was normal once again and I've heard no more threats about pills from my doctor.

So at this latest physical, my doctor went on to say that I should continue to do as much as I can to keep healthy and to stay physically fit. This is important to everyone but it is critical to someone like me who has had cancer treatment (and this sort of surgery).

Since my surgery I have learned that my Neo-Bladder is very good at performing the main function of my original bladder  (storage and delivery of urine).  But it doesn't have all the bells and whistles of the original. How can it? Who knows for sure what all it did to contribute to the overall functioning of the body as a system. One example I've learned about are the one-way valves in the bladder where the tubes from the kidneys connected. These prevented the back flow from the bladder to the kidneys as the bladder filled and pressure increased. The kidneys apparently don't 'like' this back-flow and it can interfere with their function of removing waste from the blood. This puts more stress on the kidneys and who-knows-what other systems in the body. So it's important for me to think about my kidneys when I decide what to eat and drink. Like drinking at least 8 glasses of water a day. And maybe not waiting so long between trips to the bathroom although this is hard because there's really no sensation of fullness, in the neo-bladder, until it gets really full (and starts pressing on things around it ??)

I think of this body as being like a football team (timely being a Packers fan). The team is made up of all it's individual players. Each player must be designed for their particular function in the system (physique, talent,  training, and experience).  To succeed as a team, each player must contribute this function to the whole - hold up their end of the load. Each must also contribute things that are called intangibles like spirit, leadership, esprit d corps, drive, determination, focus, etc. Each player must be in top physical condition in order to endure the demands of the game. This becomes even more important when one player goes down with injury - or otherwise leaves the team. The substitute will usually be somewhat less capable and all the other players must work a little harder to compensate. (In my case a piece of intestine was pulled out of the offensive line to replace an injured wide receiver.)  Hopefully they will all be strong enough, and the playing conditions will not be too grueling (Packers have home field advantage throughout the playoffs), and the opponent not too overpowering for the modified team to prevail and win this, and any future contest.

So I'm trying to ride my bike at least three times a week. I ride to where I used to work before retirement (~ 8 miles round trip) where I still have an office. I hope to take up cross country skiing when and if it finally snows in southern Wisconsin and I can no longer ride. I continue to umpire over 100 games a summer (chasing kids around a ball diamond). And I spend as much time as I can in our woods - trimming trees, planting, thinning, and just walking around looking at the trees, plants, and animals that live there. I hope this will keep all my players 'in the game'.