Christmas letter 2010

In the spring of 2010, Debi and Stuart drove to Kansas City (in a blizzard) to see Lance in “Around the World in 80 Days”. The snow was so bad we finally pulled over and spent the night in Iowa. The show was worth the trip.

Jordan is doing free-lance programming, umpiring baseball, filling out job applications, and applying again to teach in Japan in the fall.

Click on image to enlarge

Click on image to enlarge

Stuart had umpired over 100 games when his season was cut short in July by a diagnosis of Cancer. He was heard to say; “Baseball probably saved my life because it was only after a strenuous game that there was blood in my urine.” This led to a diagnosis of bladder cancer followed by surgery to remove most of the tumor. In November, after three months of chemo, they removed his bladder (which contained  the remaining cancer) and constructed a new (Neo-Bladder) from 2 feet of his small intestine.  Now it’s a matter of learning how to use this new bladder. So far everything is going very well.

Click on image to enlarge

Lance and his lovely children; Noah (4) and Delaney (2) have brought us so much joy over the year and we treasure every minute we get to spend with them. They all came up from Chicago to visit us in the hospital and greatly helped Stuart begin to heal. Lance and Delaney were in a Wal-Mart commercial last spring and Lance is in an AT&T commercial this winter - which helps pay the rent.

Click on image to enlarge

Even thought the cancer has consumed most of our thoughts and energy lately, we feel like it’s ending up to be another great year in our lives together. We are blessed with so many good friends and loving relatives who have prayed for us and supported us through this whole thing. With this support and the wonders of modern medicine the cancer has been removed and we will survive and prosper in the new year.

We wish you peaceful holiday season and much happiness in the coming new year.

How it works

First week of actually using the Neo-Bladder

That's me - supervising

Last Sunday we ventured out for our holiday tradition of finding and cutting a fresh tree at the The Tree Farm near Cross Plains, WI. This is about a half hour drive out into the country (for us) and usually at least a half hour tracking through the snow before we find and cut the perfect tree. We had a leisurely drive back home followed by diner at a local restaurant to celebrate.

At this point I was still wearing both catheters and the collection bags.  I really couldn't wait to get rid of them. What I failed to realize was the fact that these collection bags are MUCH larger than the neo-bladder. And after loosing the bags (the following day) the amount of time I could be away from a bathroom had been drastically reduced.

Limited range:

So, three weeks after surgery (Monday, 6 December 2010) I am finally using the neo-bladder. I can do pretty much anything I ever could except now I have to stop every hour or so and pee. I am assured that this will improve as the new bladder stretches and I develop muscles, I haven't used for a while, to gain better control. After a few days of working with this thing I am mainly sore.  

Like a baby: 
After removing the catheter (Foley), the doctor sent me home with a list of instructions and a male maxi-pad. I had no idea what to expect but he assured me that I would have little, if any, control to start with. And he was right. I am still in awe at what I have going on inside of me and I can't wait to get started at figuring this thing out.

So, it's back to basics. How do I know when I need to pee? I feel a little leak (this new bladder has no nerves to tell me when it's full). So when I feel a little leak, I run to the bathroom, sit down, lean forward and relax. Some pee runs out (there are no muscles in this new bladder help this drainage). So I try some of the other abdominal muscles and find a way to push some more out - a little bit at a time. The doctor also showed me how to push on my stomach with the ball of my hand, starting at my belly button and sliding down to my pelvis. Of course this is right over my stitches (healed now but still a little sensitive to this sort of thing). So after a minute or so of this, nothing more seems to be coming out. Before getting up the doctor wants me to unplug the SPC (Supra-Pelvic-Catheter) and measure how much - if any - runs out. This is a test for how well I did at evacuating the neo-bladder. He's hoping for less than 100 cc's. I am far below that (maybe 10 cc's ) so I've done well.

Now I go about my business and wait for another 'sign'. It takes about an hour (a little longer if I'm sitting down) and then back to the bathroom for another round. I don't have much control over stopping these leaks but I seem to be able to control the flow to the point where it doesn't start running out until I sit on the toilet and consciously relax. I believe this control comes from the muscles I have been building up with the kegels (which I am now doing in ernest).

After the first full day of this hourly exercise, I am pretty tired of it all and my muscles, and stitches, are pretty sore. Thank goodness for the SPC that I can connect to the bag and let that collect the pee for the night. I get no leakage during the night - as long as that catheter doesn't plug.

The second day goes better and it seems like it is taking more like 2 hours between leaks (average 1.5 hrs. ). It also seems like I'm going more so I'm thinking the new bladder is beginning to stretch a little. My muscles down there are still stiff and sore so I lighten up a little on the kegels.

At the end of the first week I'm still at around 2 hours but I'm getting a little better at holding and at releasing. I'm still very grateful for the night reprieve (the 'overnight bag') and the maxi-pads stay pretty much dry during the day.

Saturday morning, Jordan and I went to see "Harry Potter; The Deathly Hallows Part I" and I almost made it through the whole movie (would have if they hadn't shown 20 minutes of trailers). Then Debi and I went to the neighbors holiday party and I had a couple tasty beers. So I'm getting used to going out and gaining more confidence in my ability to control this new stuff.

Next challenge will be removing the SPC and having to make it through the night. Do I see Depends in my future?

Second post-surgery office visit. No more "baggage" (except for one small overnight bag).

Two weeks (plus) since discharge from hospital and we're taking a huge step back towards "normal". 

• Remove Foley catheter (penis). 
• Remove Ostomy bag and barrier that has been used to collect from the stints and the suprapubic catheter.
• Leave SupraPubic catheter in place. 
• Instruct on use and care of neo-bladder and remaining equipment. 

 This is the office visit I've been anticipating for two reasons: 

1. Since last Friday my Foley catheter has been leaking. 
2. The bags will no longer be needed (for the most part) & I hate those bags. 
3. (3?) Let's get on with this - I'm curious how it will all work. 

Restructuring the plumbing (closer to final configuration): 
The Foley catheter came out first (the one up my penis). This is painless once they deflate the balloon that holds it in place. It's kind of like "whoops, there it is".  Whew! From now on all the urine that is collecting in my neo-bladder will come out through my penis - hopefully under some kind of control by me.  The first thing I get introduced to is a male maxi-pad. There WILL be leakage. 

suprapubic catheter in urostomy bag

Next to go is the Urostomy pouch and the sticky disk that held it on (barrier disk) to my belly. That sticky pad really sticks (when you don't want it to). 

The catheter (suprapubic catheter) remains but it is fitted with a plug. So now I have a tube coming out of my belly. I'll get to the reason for keeping this later. I am given a dressing patch that is form fit to cover the hole and protect my clothes from seepage (a weeks worth of these patches).

My assignment for the week is to get used to the muscles and techniques needed to empty this neo-bladder. It doesn't have any muscles in the walls - like the old bladder - to squeeze the urine out of the 'balloon'. I will now have to use abdominal muscles, hand pressure to my lower abdomen, and relaxation techniques to force the urine out of this new bladder. We'll see how that goes....

Also missing is the constricting muscles that were in the prostate (also removed) which effectively shut down any leakage. Both these muscle systems were involuntary (to the extent that I didn't have to consciously contract or release either). I will now have to exercise the muscles in the floor of my abdomen through - which the urethra passes - to build up the muscle tone that will pinch off the urethra and stop leakage. This exercise is called a kegel. [ What are kegel's? ]

Suprapubic catheter (SPC):  [what's a suprapubic catheter?]

SPC  after removal of ostomy bag

What I have here isn't exactly an SPC as defined in the above link. Before the surgery I was measured for an ostomy and the location marked on my stomach where an ostomy would be located if, during surgery, it was determined that they couldn't give me a neo-bladder (for whatever reason).  During the first week after the surgery they needed an external reservoir to collect urine from the stints coming from the kidneys - before the neo-bladder was sufficiently healed and ready to function. For this I needed an Ostomy pouch which was installed in the ostomy location (logically enough). Since they already had a hole, they may as well use it for the SPC (dual purpose). When after two weeks, the ostomy pouch was no longer needed it was removed leaving the SPC. 

For the next week I will be using the SPC for two things: 

1. After doing my best empty my new bladder I unplug the SPC and measure how much runs out. This tests how well I am doing at peeing.  If it's less than 100cc I am doing good. 
2. Night relief: at night I can unplug the SPC and connect it to a bag (overnight bag). This allows me to sleep thorough the night without having to get up every hour or so to pee.

So armed with all this information; psyched by our enthusiastic doctor; stripped of tubes and bags we ride off into the midday (stopping at our favorite restaurant for a late breakfast) to try out all these new ideas. 

Stay tuned....

surgery plus two weeks

Two weeks ago yesterday they removed my bladder and made me a new one (Neo-bladder).

Tubes and "Baggage":
I've been home for a week and the only problem I am having is dealing with the two tubes that are still coming out of my body. This adds a bit of housekeeping but it's not bad because I know they will BOTH go away over the next couple weeks.

This morning I woke up and the sticky disk that holds the ostomy bag to my belly had pulled off 1/2 way. Of course this meant a leak and there was a wet spot on my cloths (pee). Not too wet but not a pleasant feeling just the same.  I had just replaced this "appliance" yesterday and I must have done something wrong in the process. Anyway, I proceeded to clean myself up and attach a new one - properly this time, I hope. I've only done this a few times so I'm still learning. This is a link to the product that I am using. There are two parts: the skin barrier and the pouch - that snap together.

This hole in my belly - and the ostomy - is only temporary and is used to bring a secondary catheter out from my neo-bladder. (This was also the collection bag for the stints that led directly from my kidney ducts (ureters) after surgery.) These stints were removed last Monday (along with the staples) and now the new bladder is collecting the urine. Most of which is still passing out through this secondary catheter.

This coming Monday the Foley catheter will be removed and this secondary catheter will be plugged - during the day - so I can begin learning how to pee normally ("neo-normally"). And so I can get used to how it feels to HAVE to pee. At night the plug will be removed from this secondary catheter (and bag connected) so I don't have to get up every couple hours.
 
Up and around: 
I am not having any problems getting around - only a little pain if I move wrong. I am prohibited from heavy lifting but that's about it. I have been walking around the block (4-block square) every day and that seems to loosen everything up. Yesterday I substituted cleaning up the driveway and deck in prep for the snowstorm we had last night. Jordan (son) has taken over hauling firewood from the back yard to the back door.

Eating and such: 
My bowels have not recovered yet so it's pretty much diarrhea and gas - with the cramping that goes with it (but that's my only pain anymore). This is getting a little old but it's better than the first four days when nothing was working. I'm eating normally now but just not so much. 

We got a new layer of snow last night; the first of the season.  Jordan cleared off the driveway, sidewalks, and deck. That's nice.

What a week (pt 2): Wake up.

I just want to say that I don't think anyone really doubts they will wake up after surgery (this day and age) and I have no doubt at all that everything will go completely as planned.  But the statistics are there and I do occasionally buy a lottery ticket, after all. So I must believe in the long shot.

And then I was awake and in a different room. I looked at the clock on the wall and it was 1:15 PM. The surgery had taken five hours. GOOD. I breathed a sigh of relief.

Good, because the long surgery meant I most probably had been given a Neo-bladder. A short surgery would mean there were problems with my internal plumbing that wouldn't allow the neo-bladder to work and I would be left with the 'simple' option of an Ostomy and an external bag for the rest of my life. So 5 hours was very good news.

I was awake and I don't remember waking up or anything else other than being awake and answering questions about this or that. The nurse was discribing all the new tubing I had been given while I was asleep. They described the morphine drip and showed me how to use the button.  I really don't remember much else. I kept looking at the clock. They said I'd be here for about an hour and then move to my room. I was anxious to see Debi. I knew she'd be worried.

It was two hours and then three hours and they were telling me that they had to wait for a room to be made ready. Debi would be frantic. Finally around 4:00 they wheeled me to the recovery wing. I got to the room and Debi, Mary and Jackie were cheering me home. Mary and Jackie - Debi's sisters - had driven 5 hours on Thursday to be here and what a great feeling to be greeted so.

I'm a little silly still from the anesthesia (and maybe the button) but I don't remember much except being silly. I remember wanting to get up and walk a little. The bed was uncomfortable on my back and I was already bored with laying down. The nursesaid it was alright to get up if I could so she took off my leg pumps, eased my legs onto the floor, and helped me stand. Debi helped me navigate to the door and out into the hallway. A few steps up the hall were all I wanted to tackle so we headed back to the bed.

I was on a no food no drink restriction but I wasn't thirsty or hungry so that didn't bother me. I was getting all the water I needed from the I-V along with sucrose for energy. They didn't replace the oxygen after the walk since my levels tested fine.

As Mary and Jackie were getting ready to head out for our house I asked Debi to stay with me for the night. It was selfish, I know, but she didn't seem to mind and I was a lot more comfortable knowing she was there. They moved a fold away bed into the room and that pretty much filled the space (everyone has private rooms nowadays.)

About 11PM, Debi helped me get out of bed again and we walked almost all the way down to the nurses station (my room was at the end of the hall). It felt good to be moving around and especially good to get off my back.

I think I slept well that first night. The nurse woke me for vitals a couple times but it didn't bother me at all. I remember thinking how slowly time was moving. It seemed like every time I looked at the clock only a few minutes had passed. Maybe I wasn't sleeping as well as I thought - or it was the effect of the Morphine.

Then there was the shift change. It's funny how quickly you become attached to your nurses. I think; "How can anyone be as good as Karen?" but pretty soon I realize that Lori is pretty great, too. We start asking each nurse and CNA how far they drove to work and were amazed at the commute they made each day. Just one more indication of the dedication of these women and men.  More about this later.

What a week (pt 1).

It's been 11 days since surgery, actually, and I could have written a book about all the details with all the ups and downs (maybe I will). I didn't blog and barely kept up with email over the time I was in the hospital because the Internet connection was limited (that's my story and I'm sticking to it). And, frankly, I was just too busy getting myself well enough to leave. So at this point I would simply like to think back, consulting my notes, and touch on the highlights.


Preparing to go under: Anesthesiology is always the scariest part of surgery to me. I don't like being out of control. What if something happens and they can't wake me up? So I decided to condition myself to help me wake up when the time came; like a distance runner builds up carbs and liquids in the body before the race to carry them through any difficulties.

The night before I began envisioning all the reasons I had to wake up.

• I pictured my wife, Debi and how much we need each other; all the plans we have that are waiting and all the dreams we have as yet unrealized. 
• I thought of my kids and all the things I have yet to do for them, or teach them, or show them. Since they are grown, it is probably a matter of how much they can teach me - but learning these things is very important to me. 
• I felt the hugs of my grand kids and replayed in my mind the sparkle in their eyes and the sound of their laughter. I need to be here to be their friend and confidant. And to take my turn reading to them at night and singing their three songs before they go to sleep. I don't sing as well as their parents but they don't seem to mind. (The last time I sang to my granddaughter, as I was leaving her bedroom, she said to me; "Thank you grandpa")
• I recounted the thoughts, wishes, and prayers that I have received from family, friends - old and new - who have reached out to me with advice, assurances, heart-felt support. 
• And finally I thought of all the things I have yet to do in life - many of which I don't even know about yet. 

Debi and I asked the anesthesiologist if he'd gotten a good nights' sleep. We asked the surgeon if he was feeling good and psyched for this surgery. All resounding "yes's".

The last thing I remember was how perky everyone was in the OR. Past surgeries I remember feeling like the room was empty except for me and the anesthesiologist. Here everyone was talking to me and laughing with me - they'd had their morning coffee and were raring to go. I barely had time to say my little prayer; "Now I lay me down to sleep and pray the Lord my soul ....."

Post surgery appointment (10 days). Pulling staples and stints.

Ten days after surgery and 3 days after going home I met again with my surgeon.

• remove staples and apply steri-strips.
• remove stints that have been draining kidneys since surgery. 
• check progress.
• talk about the surgery.

Stints: 
During the surgery they place stints in the ureters that lead from each kidney and are attached to the new bladder (neo-bladder). They run these through the neo-bladder and out the stoma to drain into that bag. They're about the size of the stir straws in mixed drinks (only flexible). Surgeon pulled these out (a little tug feeling) and now the kidneys will drain directly into the neo-bladder for the first time.

Staples:
The nurse removed the staples and placed steri-strips across any holes remaining. For the most part this didn't hurt at all. It stung on a couple but no more than a large mosquito. She said the area's still a little numb from the surgery - which helps. There were 16 total.

Report: 
Surgeon is young who obviously loves his work and takes great pride in it. He has a great smile and bedside maner. He was ebulant about my particular surgery. He said everything went great and there were no surprises or problems. He gave me a print out of the pathology report that, I am very pleased to say, completely validated the diagnosis of the urology and onocology team at Dean/St. Mary's.  And he noted that in my case he was able to clearly see the nerves that went around the (removed) bladder and prostate that lead to my penis which control erections. He said this allowed him to spare these so I would still be able to have erections (once catheter is removed) and enjoy sex. We'll see how that goes.