Surviving Bladder Cancer

Exercise- The Latest Wonder Drug for Cancer Patients

2012-01-11T16:19:00.000-08:00

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 http://www.mesothelioma.com/blog/authors/david/

Cold and the Frozen Tundra

2012-01-09T08:50:00.000-08:00

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'.

Haunted House

2011-12-23T09:43:00.000-08:00

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, but not 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 in this same house). And soon I was asleep. I woke a couple times in the night and went to the bathroom. I kept focused on my destination - careful not to look around - and each time I climbed back into 'bed' I forgot more of the extra blankets. It was hot under there and comfort was more important than the fears (again I remember this from my childhood).

Sunrise

I woke before dawn (according to my watch because it was still pitch dark outside), 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 down the sheets, brewed another cup of coffee, and found a good seat to watch the sunrise over the lake. What a show that was. I never noticed that 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 and 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.

As I looked out on the yard and the surrounding farm land the only 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 this house. All but the first renters were excellent boarders and they took very good care of the house and even 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 go a long way towards making the place presentable to potential renters (especially if I'm raising the rent - as former renters tell me I must).

So this time I have not advertized the house after the renters moved out (to a house of their own) 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 seem to evolve into broader issue and it's nice to have the time to follow wherever the problem leads. And I have also discovered that if you live in the house it will show you (or 'tell' you about) other problems that may be too minor for renters to bother telling you but would be nice to fix anyway.

I worked all day with the radios blasting on all floors. 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 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. It didn't help my piece of mind, that night, knowing my escape vehicle was unavailable.

I found someone to help me open the car the next day. 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. This, too, 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

2011-12-11T07:22:00.000-08:00

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:

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.
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 - waivingtheir hands up in the air to get the fans in each section in turn, tostand and cheer and then sit back down while the next section standsand 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.

2011-09-09T08:30:00.000-07:00

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 tomy 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?

2011-06-08T18:12:00.000-07:00

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 meana 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'

2011-05-03T13:32:00.000-07:00

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

2011-04-28T13:01:00.000-07:00

At our 'six-month meeting with mysurgeon/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 mysurgery in November but he hasn't been concerned because some elevationis 'normal' following this surgery. But after 5 months the doctorsstart 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 !!

2011-04-05T20:00:00.000-07:00

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

2011-03-20T13:38:00.000-07:00

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 theaches and pains during the night and awake refreshed and renewed. It wassomething 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 andunderwear be heavy and soaked with urine. Will I need to struggle, halfasleep, and change the sheets. And how many times during the night? I remember these nights when our kidswere little. I remember trying not to be mad and trying to besupportive because I could imagine how embarrassing it was for them. Idon't need to imagine any longer. I now know this embarrassment firsthand. 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

2011-03-16T12:44:00.000-07:00

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.

2011-03-04T13:45:00.000-08:00

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

2011-02-19T09:32:00.000-08:00

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.

2011-02-16T07:22:00.000-08:00

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).

2011-02-15T06:24:00.000-08:00

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...

2011-02-04T12:04:00.000-08:00

... 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).

2011-01-06T20:04:00.000-08:00

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

2011-01-03T16:10:00.001-08:00

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. MyCreatinin was 2.1 (above normal range ~1.3) so they did an ultrasoundWednesday. No word so I'm assuming either there's nothing wrong orthere's nothing they can do till I've finished my current course ofantibiotic (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.

Christmas letter 2010

2010-12-20T18:17:00.000-08:00

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

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

2010-12-12T08:00:00.000-08:00

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).

2010-12-06T13:03:00.001-08:00

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:

Since last Friday my Foley catheter has been leaking.
The bags will no longer be needed (for the most part) & I hate those bags.
(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:

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.
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

2010-12-04T18:58:00.000-08:00

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 bagto my belly had pulled off 1/2 way. Of course this meant a leak andthere was a wet spot on my cloths (pee). Not too wet but not a pleasantfeeling just the same. I had just replaced this "appliance" yesterdayand 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'mstill 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 asecondary catheter out from my neo-bladder. (This was also thecollection bag for the stints that led directly from my kidney ducts(ureters) after surgery.) These stints were removed last Monday (alongwith the staples) and now the new bladder is collecting the urine. Mostof which is still passing out through this secondary catheter.

Thiscoming Monday the Foley catheter will be removed and this secondarycatheter will be plugged - during the day - so I can begin learning howto pee normally ("neo-normally"). And so I can get used to how it feelsto HAVE to pee. At night the plug will be removed from this secondarycatheter (and bag connected) so I don't have to get up every couplehours.

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.

2010-11-30T14:58:00.000-08:00

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).

2010-11-30T13:01:00.001-08:00

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.

2010-11-30T11:00:00.000-08:00

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.

Irrigation 101.

2010-11-24T19:11:00.000-08:00

Convincing a piece of intestine that it's no longer intestinal.

Flushing out the mucous:

Monday following surgery (day +3) at 7:00 AM the resident doctor came to check me over as usual. But this time, after checking my stitches and listening to my lungs and stomach, he spread out a pad on my bed on which he unpacked a irrigation kit. It consists of one tray (size of a bread pan), a huge syringe (size of a push-up pop), a bottle of saline solution (0.09%) and a clamp (hemostat). At this point I still had one of those big collection bags connected to each of my catheters. So the idea here is two fold:

Flush the Neo bladder of any mucous the intestinal tissue is still producing (2 feet of the small intestine was used to make it - remember).
Start introducing liquid into this new pouch to introduce it to it's new function. All urine is currently passing directly out of my body via those kidney stints. The new bladder is just sitting there empty so all of the 'origami' can heal.
Check the connection between the chamber where the Foley catheter goes and the chamber where the Supra Pelvic Catheter (SPC) goes.

Irrigation procedure:

Pull back covers to expose all the tubing and the body areas where they enter (remember this for later).
Place pads under tubing to catch any leakage.
Clamp off catheter tube coming out of penis (either catheter can be chosen to clamp first).
Disconnect tubing going to collection bag.
Open ostomy collection collection bag at the collar (like a zip lock).
Carefully slide bag away from body enough to retrieve catheter tube (take care not to pull the stints.)
Fill syringe with about 20 ccs of saline (about half full).
Attach syringe to tube that was removed from ostomy bag.
Inject saline into tube.
Now try to withdraw whatever liquid will come out by pulling (carefully) on the syringe plunger. ( you should get saline along with lots of mucus - sometimes you do and sometimes you get nothing)
Repeat step #7 - #10 at least two more times.
When you've gotten all you can get it's time to switch ends and repeat the process on the foley catheter. Move clamp from Foley tube to ostomy tube and infuse and withdraw saline 2 or three times.
Finally unclamp the ostomy tube and replace in collection pouch.
Infuse 20 more cc's of saline into the foley tube and verify that it comes out the foley tube. Thus verifying the bladder is still open from one end to another.

Class discussion:

Tuesday night and Wednesday morning (day 5) had been an awful time for me. I had only slept about an hour all night and I was tired and depressed (at not being able to sleep mostly). I was just dozing off after morning 'rounds' when Dr. Moore walked in with his irrigation equipment. He asked me if I minded if he demonstrated the technique to a few of the staff. I said 'no' and he beckoned in about a dozen nurses who gathered around my bed. Of course this perked me right up - always the ham - suddenly I had an audience. My modesty quickly passed (remember #1 above) as I watched their faces and helped out with the demonstration wherever I could ( I was begining to feel like an expert, myself, by now).

It only takes about ten minutes and everyone was gone again leaving my wife and I to laugh and say; "what was that?". I must have been a good test subject (dummy) because when Dr. Moore came for the evening irrigation (two-a-day) he had another dozen or so nurses from the next shift.

I learned that since my particular surgery is only performed a few times a year at St. Mary's, much of the post surgical care that is unique to this surgery has been left to the resident doctor. There is a feeling by the doctors that this is more of a nursing thing and they are attempting to shift some of the tasks to the nursing staff. Hence the demonstration.

This was just one more incident that supported the feeling that I was a special patient in the ward. I have no doubt that all patients are made to feel special in the surgery recovery ward at St. Mary's but I felt like I was a little bit more...

Here we go.

2010-11-19T08:00:00.000-08:00

5:15 AM sounds early to be walking through the hospital doors but I'm usually up and about by now anyway and I think Debi is too nervous to sleep - she was up before me. Since I can't have any food or drink it's just as well to get started early. Debi's sisters drove down yesterday and they will join her at the hospital later in the morning to help her with the waiting.

We sit in a very nice prep room and host a parade of professionals as they each apply their magic - after I strip down and put on hospital gown ("the last suit you will ever wear").

Wrist band ID (now I can go on all the rides).
Wrist band blood type match - just in case.
Vital signs.
Sign consent forms.
anti-nausea pill.
Blood draw for lab.
Shave (you know where).
Wait
Meet with the Ostomy Nurse - to mark where the hole will be in my belly (for tubes, etc). This should be temporary unless there is reason to abort the neo-bladder and go with a permanent Urostomy (ugh).
Meet with the anesthetist.
Wait
Meet with the surgeon (he's bright eyed and bushy tailed - had a good night's sleep and is ready to go.)
Wait.
Debi packs up all my stuff (clothes, cell phone, ipod, and glasses - I won't need to see).

Finally, it's nearly 8 o'clock and the crew is there to roll me down to the OR. I lay back and they cover me with a hi-tech sheet that is mylar-like on one side and black on the other. (They suggest I save this for the car - great emergency blanket in the winter.) They a hair-net style hat made of the same stuff on my head. This is very warm - nice - the O.R. is cold.

A hug and a kiss from Debi and away I go ....

It's down to hours.

2010-11-18T17:52:00.000-08:00

Bowel Prep under way....
T minus 11 hours and every thing's been go (literally) for a couple hours. It's all clear now and ready for launch (or lunch - but that will have to wait). I was a little nervous because half way through that 4 liters of stuff I threw up (seemed like a lot). I was pumping it in too fast, I guess - maybe 10 oz every 10 minutes. I backed off on the rate and the rest stayed down just fine.

Now I'm watching Charley Browne Thanksgiving and taking the massive doses of antibiotic to really clean the pipes. I'm feeling pretty good. I've been cold all afternoon but I put another log in the stove now and I'm toasty warm.

The hospital called a couple hours ago and said I was first on the surgeon's schedule so I need to be at the hospital at 5:15 for surgery at 8:00. The nurse said I could stay on clear liquids until midnight but nothing (not even water) after that.

My regular doctor called this afternoon to see if I was okay (pretty nice huh). She suggested sucking on lime before and after each glass of that golytely. That helped a lot because when I had my colonoscopy a few years ago I couldn't finish the bottle and they had to give me an enema or two when I got to the hospital. We chatted for quite a while and she assured me that I was very lucky to have this surgeon as he is very good. She eased my mind and now I'm ready for the show.

I'm getting so much support from family and friends that it's hard to get down in spirits. It's a great feeling - this outpouring of thoughts, prayers, and love. Thank you all!

Day before surgery - thoughts (panic?)

2010-11-18T06:10:00.000-08:00

Thursday, 18 November 2010 (t minus 1):

No solid food from breakfast on - only clear liquids. I had a couple bites of banana at 3AM when I couldn't sleep - that's before breakfast, right? It will all come out when I start drinking that stuff.

2:00 PM beginning drinking Golytely. UGHH I hate that stuff. Drink 8 oz. every 10 minutes until gone (2 - 2.5 hours).

7 PM take Metronidazole and Neomycin dose
8 PM take another dose of the above.
11 PM take final dose of above antibiotics. This is meant to kill off as much of the intestinal flora as possible to minimize infection when part of the bowel is removed.

DOUBTS?
Yesterday I got an email from my surgeon:

Just wanted to let you know that Friday an ostomy nurse will bestopping by in the pre-op area to mark your skin. We are still planningon the neobladder, but I think we talked about this, under rarecircumstances, the bowel won't reach down to the urethra and theneobladder surgery won't work. In that case, we default to the ostomysurgery and will use the pre-marked ostomy site provided by the nurse.

Now I am concerned. Much of my thought over thepast few months has been weighing the risks of cancer coming backversus the quality of life after the treatment/surgery. I haverationalized the neo-bladder in this equation but have not rationalizedthe bag.

I remember discussion of the possibility that thecancer has moved down into the urethra to the extent that we cannot useit to drain the neo-bladder or that more has to be removed in order tokeep it from being a potential source of cancer back into theneo-bladder.

My question this morning is about timing. Myunderstanding is that the decision to remove urethra will be based onsome real-time lab analysis of the tissue during the surgery. Is thisdone before the bladder is removed? If the neo-bladder won't work canwe leave things alone and go back to chemo/radiation?

Iunderstand that if cancer cells are found in urethra it means it hasmetastasized and all bets are off anyway. T think I've answered my ownquestion but I'd like to hear it from the surgeon so I sent him all this in a reply to his email.

I will, of course, deal with whatever I am given after the surgery. I have to trust the surgeon's discretion to make the right choices once he is in there and he can see what the situation really is. As much as medicine has advanced -- to be able to do things like neo-bladders -- the standard of treatment for cancer is still to remove as much of it as possible and deal with whatever we have remaining.

Earlier Doubts:
Earlier in the week Debi and I were stressing about why we needed to go through with this surgery at all when we have survived chemo and all tests (CT Scan, blood tests, urology) are negative. Why not wait and see if it comes back? We know that these tests are only for active tumors and don't see activity of individual cells. Once the cancer has made it into the muscle tissue the cells are 'available' to the blood circulation system and if they move into the blood they can move anywhere in the body (metastasize).
But, given this, why not even go back in the bladder (with the cytoscope) and see if their is any visible sign of the original tumor. Why not biopsy some of the muscle tissue to see if cells are still there.

The question, of course, is: What if both these tests are negative too?
The answer is: Nothing changes. The tests may not be sensitive enough and the risk of leaving the bladder is too great for the return or spread of the cancer. The Standard of Treatment has not changed and the Neo Adjuvant chemo and all the subsequent tests are simply a part of this overall treatment strategy.

So, I'm having my morning coffee (and grateful to be allowed that) and I will not eat all day. I will psych myself for drinking that awful stuff and a long night of uneasiness (terror?). I have a couple books to read ( "Aragon" and "Street Lawyer" - John Grisham) and I can work on updating my web sites (this keeps my mind busy). And there are always more things to do around the house (put on storm windows, bring in more wood, etc.)

Last week before surgery.

2010-11-15T11:29:00.000-08:00

November 14: Down to the wire...

I've spent the past 4 weeks trying to get back into shape and recover from the effects of Chemo. I have been riding bike to campus (4 miles one way) at least 3 times per week. I've spent some time at the farm working on pruning the trees and removing some saw logs for lumber. I've been building stools and stands from this lumber and working around the yard and garage, cleaning up and preparing for winter.

I haven't been blogging because (I think) I am feeling good about this surgery and I don't want to dwell on it too much for fear it might start scaring me. I mainly want to get it over with so I can put it past me and move on. I'll deal with whatever I need to deal with but the not knowing (even with all the information you still don't really know).

I still wish there were some other way - but I am convinced this way is the best treatment available (this I believe).

I have been working with The Center for Patient Partnerships at the UW-Madison. They provide patient advocacy services. This has helped to the extent it is someone to talk to who has worked with patients before me and they have access to information that I may not. They have suggested that I contact some of this doctor's former patients if I have questions about the procedure and the recovery. I expressed interest in the different options and how previous patients of each felt about their choices. After thinking about this I couldn't imagine how anything they might say would cause me to change my mind about my choice so I haven't followed up on this.

Aches and pains:
I still feel well. I have aches and pains but these are not that unusual. My lower back hurts - I have a crick in my hip area so that when I move a certain way I get a 'shock' along the top of my hip bone (crest of the ilium). Of course every pain I get 'means' something now. My lower abdomen feels funny and may be related to my bladder. There is some pain in the area but it's hard to tell if it's intestinal (the cabbage I ate last night). My shoulder still aches from falling on my bike and I attribute my hip soreness to this as well. I had my pre-op physical and passed with flying colors. My doctor agrees with everything I'm doing and tells me this surgeon is very good (would she say that about anyone at this point?) but he looks like he's about 12. We agreed that everyone looks that way to us now days. LOL

That's enough of this. ..

CAT scan results and surgery schedule

2010-10-19T19:04:00.000-07:00

Summary (for the busy people):
CAT scan: negative.
Surgery: Radical Cystectomy and Neo Bladder reconstruction scheduled for 19 November 2010.
Post surgery hospital stay: 4-6 days
Recovery: 6-8 weeks.

(Warning: the following may contain TMI for some folks)

CAT Scan results were negative. Which is definitely a positive, good thing! Whew! There is no sign of the tumor coming back or any other lumps or bumps in the organs, fat, muscles, or lymph nodes surrounding the bladder. Surgeon says this is the optimal condition to go ahead with the surgery to remove the bladder.

The obvious question is; "Why go ahead and take it out if there's no longer any sign of cancer?"

The answer is that there are most likely microscopic cancer cells remaining in the muscle tissue of the bladder wall that may - will probably - start growing again and either produce another tumor in the bladder or metastasize and produce a tumor in the lungs, liver, or some other organ that I can't live without as 'easily' (if at all) as the bladder.

There are basically three surgical options for what to do after removing the bladder (and prostate). These are explained on the WebMD Site [ Click Here ].

I have chosen the Neo-Bladder ( continent reservoir with Orthotopic diversion ) because it doesn't require a stoma ('port' in my side) and, since all the plumbing is reconnected, it should allow the return to the closest thing to 'normal' after surgery. The main down side is the potential for problems with incontinence (leakage) since the sphincter that we normally use to control flow is removed with the bladder. However there is a muscle that we (as adults) normally only use to stop flow that we can train to control flow as well (start doing kegels now). Typically around 10% of men experience 'leakage' during the day and 20% during the night.

Some other possible problems relate to the differences between intestine tissue and bladder tissue for bladder function.

The bladder has muscles in the walls that are used to squeeze out the urine. Intestines don't so I will need to learn how to relax when peeing while applying manual pressure to my lower abdomen (while sitting).
The intestines have a natural population of microorganisms that are not completely removed by antibiotics prior to surgery and cannot be completely removed from the neo-bladder subsequently. This means that any subsequent urine tests will read positive for 'infection'.
The intestines produce a mucoid lining that the neo-bladder will continue to produce for some time after surgery. This may block the urethra and cause problems with peeing. They will teach me how to clear this (back-flush the system?).

This is major surgery that will take 4-5 hours to complete. The incision will be around 4 inches extending below the belly button (so no major muscles will be cut - as they are in hernia operations above the belly button).
During surgery they will remove the bladder and prostate along with some surrounding fat and lymph nodes. He will be very careful to spare the nerves around the prostate that extend down to the penis by not cauterizing excessively in that area.
they remove a 60 cm. (~2 foot) section of small intestine and form it into a pouch to replace the bladder. He connects the ducts from the kidneys to the top and the urethra (to the penis) to the bottom.
He will create a stoma in my side (temporary) and insert stints into the tubes from the kidneys that pass out the stoma. A catheter will installed from the new bladder through the stoma. A Foley catheter will be also be installed through the penis. These three drainage devices will be removed (in some order that I have forgotten) and the stoma closed during recovery.

Recovery should take 4-6 weeks and during that time I should be able to gradually resume my normal schedule but without any lifting. They will work with me to get used to the operation and maintenance of the new bladder.

Questions:
Debi asked how many of these surgeries Dr. Caropreso has performed. He said about 6 per year.

Why wait so long for surgery? Want to make sure all effects of Chemo have passed and body has rebuilt it's ability to heal. Operating too soon will make the recovery longer.

We scheduled surgery for 5 weeks and 3 days after my last infusion.

Chemo: week 9 - done and moving on to next step.

2010-10-19T18:00:00.000-07:00

Tuesday (October 19, 2010): skip the final infusion (pretty much normal), CAT scan, and meet the surgeon instead.

Lowlights:

Tire easily (no problem driving to Chicago).
Still have queasy feeling most of the time.
No(?) beers.
Monday through Wednesday I have had pretty bad head/neck aches at night. Tylenol helps but not completely (never in the daytime however). I think this is left over from my bike fall last week (maybe because I'd sneaked a beer or two during dinner.)

Highlights:

A very nice neighbor lady saw my Lost & Found ad in the paper and returned my keys.
Great weekend in Chicago spending 'quiet' time with Lance and the Grandkids (pictures follow) and our good friend Emily.
Good visit with Surgeon and results of CAT scan were completely negative for any visible signs of cancer. This is what we all expected but we've expected 'good' and gotten 'bad' before. So this was definately good.
We now have a date for surgery: November 19, 2010. And we have a pretty good idea how it's going to go and how recovery is going to happen - more later.

Pictures from Chicago:

Noah helping Grandpa finish sand a butcher block

'Tool man'

I brought an old piece of butcher block for a counter in Lance's kitchen. Noah helped me sand it down to a nice smooth finish. Noah's good with a sander. He was very careful to go back and forth and get all corners and edges. I took over and did the sides (hard to balance) while Noah worked with some other tools.

Delaney showing Grandma how to do -- something.

Lance making breakfast (ham?).

A great weekend to just sit around and play and talk. We didn't have to rush anywhere or take anyone to this thing or that. It was very, very nice to have this time with Lance and the kids.

Chemo: week - the last week, I hope -

2010-10-15T19:26:00.000-07:00

Looking back on it (briefly) - then forward...

It's been 3 courses of chemo and I had my last infusion this past Tuesday (October 11, 2010). This is grounds for a celebration but I'll put that off until the effects wear off so I can fully enjoy it. The celebration will be short lived - like after winning the play-offs - because I've made it to the World Series and those games(?) remains to be won.

I am tired of feeling the way chemo makes you feel. The oppressive 'warmth' that weighs on you to your core. I seem to have avoided most of the side effects: hair loss, numbness in fingers and toes, further loss of hearing and eyesight, weight loss, nausea (mostly), <the list goes on>, and for that I am extremely grateful. But, none the less, I have come to appreciate the dangers that accompany the injection of these powerfully toxic chemicals into a 'healthy' body and my hands are still sore from the infusions (and leak thereof).

My treatment was designed to run over three cycles; each with three weeks of infusions followed by one week of recovery. In all three cycles, my body wasn't able to withstand the fury of these poisons and the third infusion had to be dropped for fear that it would weaken me to such an extent that I might contract pneumonia or some other infection that would take weeks or even months to recover from to a point where we could restart our attack on this cancer. So we took one extra week off which didn't bother my Oncologist so it certainly didn't bother me and, as I have documented in this blog, I have made good use of those breaks.

I will be meeting with my surgeon next Tuesday (October 19, 2010) to get a follow-up CAT scan and discuss surgery options.

This week I have been tired. I don't take many nausea pills (as many as I take when I get the platinum chemo) and I don't get the two-day rush that comes from the steroid infusion for nausea. So I slept most of Wednesday.

Thursday I felt good enough for a bike ride and I took a corner too fast and dumped my bike. I'll have sore shoulders and a sore wrist for a while (no scrapes or road rash to heal). Only my pride was injured which is why I got up and left the scene so fast that I didn't notice my keys had fallen out of my pocket. I checked the area on my way home and they had already been picked up. If this weren't enough, my front tire went flat and I had to walk the bike the rest of the way home.

But that was yesterday. Today we're off to Chicago to stay with our son and beautiful (and exceptional) grand kids for the WHOLE WEEKEND. So things are looking up.

Make 'hay' while the sun shines....

2010-10-08T10:57:00.000-07:00

Take advantage of a break in chemo.
Last spring my brother and I cut a couple red oak saw logs from his woods and hauled them to a lumber mill in Frederic. This worked so well that we've been itching all summer to do some more. This break in the chemo, and some beautiful weather, gave us the perfect opportunity.

Sawing the trees:

Taking down a tree

We dropped two beautiful red oak trees - infected this year with oak wilt and dieing - and cut two saw logs from each.

Then we cut two Black Cherry that were getting on in years probably past their prime already. After we got them down we discovered that one had begun to hollow in the middle already. Each had two good saw logs and possibly a third. Only a little loss in the middle of the one that will be easy to cut around.

Load up saw logs to remove from forest

Saw logs loaded on the wagon for removal from woods

We set up this old hay wagon to haul the logs out of the woods and back to the farm. I used the Kubota with pallet forks to load these logs. We chained them down to the wagon to keep them from rolling off as we pulled the wagon out of the woods via the 'logging road'. In order to navigate we had the tractor (FWD) pulling the truck which pulled the wagon. We loaded a total of 12 logs on this wagon before we got out of the woods (8 Red Oak and 4 Black Cherry).

Logs loaded for trip to saw mill

FULL load of saw logs

The old hay wagon didn't look like it would survive the 20 mile trip to the saw mill so we moved 10 of the logs to the truck and trailer. This was probably a bit over-loaded but we took the back roads and didn't go over 20 MPH.

I followed in the car just in case.

Unloading logs at the mill

Heavy equipment makes quick work.

At the mill each log had to be lifted and a chain put around to drag off the trailer. We were thinking we could have wrapped the logs with a chain before loading but this actually didn't take long at all.

The logs after cutting into boards

Doesn't look like much but it's still a full load.

Nearly 800 board feet of red oak and black cherry.

This load is only slightly less heavy than the logs but it stacks better.

Stacked and stickered in the shed to begin drying.

Red Oak and Black Cherry stacked to dry.

We would have preferred to let this dry up a little before stickering but we don't have the luxury of time during this on this trip. The weather will be cold enough now that there shouldn't be a problem with fungus developing along the sticker pieces.

Not a bad way to spend some time off...

Break in the action - again ( time to reflect?.)

2010-10-05T07:27:00.000-07:00

Deja vu all over again
Last week I was sent home again without getting my third infusion of the second round. Same story as with the first round; my platelet count had dropped too far to risk a third infusion of the cycle.

After the first break my counts had rebounded to a level well above where they were before starting chemo. But even after reducing the dosage for the second round they have dropped even further than before at this stage of my cycle.

So I get another two-week break. I don't mind this because this round has been harder than the first. Not so much that the effects were any worse, it was more that they didn't get better like they did the first round.

Comparing the first and second rounds
Round 1:
Infusion 1: Carboplaten 752 mg. and Gemcitabine 2100 mg.
Infusion 2: Gemcitabine 2100 mg.
Infusion 3: Canceled - low platelets.
Round 2:
Infusion 1: Carboplaten 752 mg. and Gemcitabine 1680 mg.
Infusion 2: Gemcitabine 1680 mg.
Infusion 3: Canceled - low platelets.

The first round seemed more intense. Maybe only because I didn't know what to expect. I had a rush of energy after the first infusion. This energy lasted two days ('we' count days including the day of infusion) which was probably due to the steroids. On Wednesday I crashed and took a long nap (longer than normal) to get through the day. Then I settled into a sort of general crappy feeling for the rest of the week and through the weekend. The following Monday I felt great - back to normal. Ready for the second infusion - this time just Gemzar.

After the infusion of Gemzar I was very tired and I had a weird panic attack. I felt bad crappy for a couple days but after that I felt pretty good for the remainder of the week. We travelled north for the weekend to meet some relatives who were visiting from Arizona. When I went in for the third infusion they told me my counts were too low and we'd take two weeks off instead of one before starting the next round.

The second round started with that pain during infusion due to the leakage from the I-V. The first week went about the same except I didn't feel great on the following Monday. The general crappy feeling extended through the second infusion and lasted the whole second week. I was just starting to come out of it when I went for my third treatment and they told me my counts were too low again and I could go home.

It's always hard to get through this break because I start having doubts. I wonder about the decision I made to take the neo-adjunct chemo instead of having the surgery right away (get it out of there). I wonder about aches and pains in my back (are they signs that I'm having kidney problems - spread of the cancer or side effects of the chemo?).

Debi saves me by offering reassurances; "Keith Richard's wife went through the exact same thing and she is just fine after two years." And she was quick to point out; "Your sore back is from bouncing around on a tractor for three days while working in the woods."

Okay, now I'm ready for the third round. Maybe I'll do better. This will be the last chemo before surgery. Bring it on ....

Please don't practice on me - the concequences of a leaky IV.

2010-10-03T07:26:00.000-07:00

Dr. Oncologist mused as he examined the back of my red and swollen left hand; "Well, it's apparent that the I-V leaked during the chemo infusion." He looked up at me and smiled; "But, this doesn't look that serious." He added; "We see this occasionally but it rarely causes serious problems any more." He felt my hand and arm and said; "This used to be quite common and it wasn't unusual to have it cause open lesions that required skin grafts in order to heal - but I haven't seen that in at least a decade (or two)."

Remember my last full infusion (Sept 7) I had the young chemo nurse who had so much trouble inserting my IV. A week and a half had passed and while watching my team bowl ( I asked my son to bowl for me since I wasn't feeling that strong) , and as I applauded, I noticed my left hand begin to hurt. As the night progressed, the swelling became more pronounced and it began to get warm to the touch. I stopped clapping and when I got home I sent a message (via MyChart web software) to Dr. Oncologist. The next morning I got a call from Chemo Nurse and we scheduled an appointment that afternoon to have a look.

Dr. Oncologist said I was lucky I didn't have a hole in my hand. He surmised that the IV had leaked and some of the chemo had gotten into the tissue of my hand (or into the walls of the vein). He reminded me that these chemicals are 'nasty things' and when they 'get out' of where they should be they can cause trouble. By then my hand was no longer hot and the swelling had gone down. He checked me for soreness and decided I was out of danger for ulcers or other permanent damage. They wouldn't be able to use that hand again for infusions (or any IV probably). The subject of a 'port' came up again - or at least a mini-port in my upper arm just to get through the remaining infusions.

I am soaking this hand in hot water at least twice a day and after a month I still have a small lump on the back of my hand. Dr. Oncologist recommended I flex the hand and stretch the wrist to work out any scar tissue from the damaged tissue. When I work the hand (and my ring finger) still get 'angry'. A soaking makes it better and I do think it's finally healing.

I guess the take home message from this is that when the nurse asks me if I'd like someone else to try inserting the I-V, I should say "YES".

Chemo: week 6 - blood counts.

2010-09-14T15:09:00.000-07:00

Lab test results so far in chemo treatments.
August 10 - Blood tests before first Chemo infusion - Carboplatin & Gemzar
August 17 - Blood test before second chemo infusion - Gemzar alone.
August 24 - Blood test before third chemo - counts had dropped too low so no infusion of Gemzar.
August 31 - No blood test this week - week off to recover strength.
September 7 - Blood test before first chemo of second round - carbo & gem
September 14 - Blood test before Gemzar.

The second round of infusions are at a lower dose of Gemzar to reduce depression of blood counts enough to allow us to safely administer the third dose.

chemo: week 6 - Is it routine yet?

2010-09-13T18:15:00.001-07:00

Today is Monday, the last day of the fifth week. This completes the week of the first treatment that I've had before - again. (what?) Anyway, I now can compare the progression of symptoms over two replicate weeks to see if there is any change that may be caused either by environmental effects or some additive effect of the drugs (or change - strengthening or weakinging - in how my system tolerates them).

Looking back on the first week (first chemo) by this time - 7 days into the dose - I was feeling great again. That Monday I was no longer feeling queasy or 'hot in my core'. Now, today, I feel okay but I'm not feeling great. I have that yucky feeling still but it's just not as bad as it's been all week (since Thursday, anyway). Other than that the week has been pretty much the same.

Except for my hand - where the IV was put in. That is sore and swollen. My ring finger is red and swollen and I've taken my wedding ring off (while I could). I have no grip with that hand and if I forget and try to grab something I get a shooting pain. After the first couple days of cold packs I am now soaking it in hot water a couple times a day. It has been getting better all week. The redness is gone and the swelling and soreness is going down. My grip is improving - I forgot while pulling weeds in the garden and it reminded me, however.

I've survived the second dose of Carboplatin and Gemzar. Tomorrow just the Gemzar.

chemo: week 5 - it's back and the novelty is gone.

2010-09-12T07:44:00.000-07:00

Week 5 began Tuesday morning at the clinic with a New Nurse. She was very young and seemed a little uneasy with the idea of sticking me with the IV needle. She tried my right hand first (I suggested a switch from the past two weeks in my left). She said I had 'rolling veins' but she should be able to get it. (This is the first I've heard of 'rolling veins'.) She tried once and got it - but it got away (or something like that). She asked if I'd like someone else to try it - this time on the left hand - and I said; "No, give it another try." (while she was working on my right hand, Chemo Nurse walked by and mouthed; "every one's veins roll"). New Nurse got it this time and it seemed like everything was going well.

About half way through the steroid infusion (second anti-nausea bag) my arm and hand started hurting. It helped to raise it up so New Nurse brought me a second pillow for support. She said the steroid rarely hurts - the Gemze is more likely to hurt. (that's the next bag).

Between bags, Chemo Nurse stopped by to check the needle placement and said it was in the vein and working properly - something about back-flow. Sure enough the Gemzee did hurt so they slowed the pump which helped. The Carboplatin wasn't supposed to hurt - and it didn't - but they kept the pump slowed just in case. This meant an extra hour in the chair but the time goes fast. Debi is there to fetch anything I need, to talk, to play games (haven't had time so far), makes the time go.

The novelty of the rest of the weeks experience is worn off already. The first two days (remaining Tuesday and Wednesday) I am busy keeping busy. I get a lot done on my woodworking projects and any other jobs that are waiting. This burst of energy lasts until around Thursday noon when I crash. I sleep. Wake up and feel tired and 'crappy' and then go back to sleep some more. It seems like the first week I got better after a couple days but this week it's held on through Saturday.

Saturday is better and I do get some work done. I sawed up the tops for two more stools and gathered some more acorns (squirrels had broken into my stash and eaten half a pickle pail of red oak acorns). I had to beg out of a birthday party for my grandson in Chicago. After the fact, I am glad I did. It would've been tough.

So, week 5 in a nutshell:

Back in the program.
Novelty has worn off.
Reality check with the IV's (next time I ask for Chemo Nurse to stick me).
When I say 'I feel fine' it means I'm not physically ill at the moment. Chemo lowers your standards for what feeling fine means.
I miss the Grandkids.

Chemo: Week 4 - concerned.

2010-08-30T13:27:00.001-07:00

As I approach the end of week three and beginning of week four, I am a little bit concerned that I'm not doing as much as I should be in fighting this cancer. I feel great. I am doing everything I would normally be doing (and more).
I feel great but people with early stage cancers do feel great so I take little comfort in this. I am healthy and strong ( and feel fully recovered from the ill effects of the chemo) and I have to assume the cancer, which is part of me, has recovered likewise.
A friend who has gone through this told me that for cancer patients chemo becomes like a security blanket. That would explain some of my concern. My blanket is missing these past two weeks. As much as I hate the feeling, it is comforting to know we're fighting the fight. It's a star to which we can hitch our wagon.

Three things I can take out of this week:

I recover pretty quickly from the side effects of chemo (at least the ones I can sense). This is reassuring since after two more cycles I will have to recover for surgery.
I was able to umpire some baseball games ( those not rained out) that I wouldn't have been strong enough (or it would have been too dangerous) to do under chemo.
I will be able to cuddle the grand kids all this weekend. This would have been dangerous with low immunity during chemo and I beyond my energy and strength (nearly so even when I'm healthy) without this break.

I'll take these three things to the bank and save them up for next week when I get my blanket back and I need some warm, soft, memories of beautiful, smart children who are full of energy and life. Like Frank Barone said; " Smell that?", as he sniffs the grand kids heads; "That there's the fountain of youth."

Chemo: week 3 - and holding

2010-08-24T21:09:00.000-07:00

Week 3 begins today.
Week 2 had been pretty mild (not too much discomfort or fatigue) so we weren't quite as apprehensive about another treatment as we drove to the chemo place yesterday afternoon. After my blood test, we met with Oncologist (my usual Dr. this time - not his 'don't do anything fun' colleague).

After asking all about the past week (symptoms, any problems, ability to work, etc. ) and checking me over ("any pain here?", "deep breaths", etc.) he was pleased with my progress. It was all good.

But when the results of the blood tests came in he was concerned that my hemoglobin had dropped so much during the past week and, although it was still well within safe range, he was afraid another dose of Gemcenobin would take these numbers down farther than we wanted. Rather than risk a protracted illness, he concluded that we take the following course:

Stop our first cycle at the two treatments we've already taken.
Take this week off to give the blood counts time to recover.
Stay with our plan to take next week off as well.
Begin the second cycle on September 7th at a slightly reduced dose - so my counts don't drop as much.

Woo Hoo (right?)

Well, we're not sure. It's great to have a week without that stuff going into my system. Even though it didn't have much effect on what I've been able to do, it was NOT a pleasant experience. But a week off is a week that the cancer killers will not be in my system and, according to Oncologist, any cancer cells will begin to grow again (though they will be starting from a reduced level). It illustrates what a delicate balancing act this chemo treatment is.

Notes from meeting with Doctor:
This is the first time we've met with our Oncologist since the first treatment so we all had questions:

OLD SWICHEROO: Cisplatin VS Carboplatin. Cisplatin isn't currently available so we're limited to Carboplatin until that changes. Carboplatin isn't used as much as Cisplatin but, according to Oncologist, it is generally considered to be equivalent. It also tends to have milder side effects but this doesn't seem to effect it's potency as a cancer killer. When the pharmacy tells us that Cisplatin is available we could switch back for the remaining treatments but there doesn't seem to be any reason to do this. Oncologist asked me if this would be something I would want to do? I say, why risk more severe side effects for no added benefit. He agrees.
COMFORT FOOD: I gained 3 pounds since last week (after loosing ~ 4 the week before). Wife credits this to my eating all the time (virtually) to keep food in my gut (at suggestion of Chemonurse to prevent nausea and relieve discomfort). Oncologist suggests a different tact: queasiness and discomfort may simply be indigestion caused by the chemo drugs destroying the mucus lining to the stomach and intestines. Since there are no sensory nerves in the stomach the resulting symptoms (body's call for help), although manifesting itself differently in different people, is basically just acid refulux (which seems to be the diagnosis for everything these days - have you noticed?) And this can be relieved by taking antacids like Tums or Prilosec (12 hour relief).
BATTLE OF ATTRITION: So Wife asked Oncologist what happens to the cancer when we pause treatment like this. He said it starts growing again, of course. Seeing our concern, he quickly added that this is quite normal. He drew a graph with the curve of a exponential decline that drops quickly at the beginning and tapers off to nearly horizontal. He said; "This is what happens to the cancer over time during chemotherapy." "But", he continued; "if you look closely at the line you will see that it is really a series of humps and valleys where each valley drops lower than the last. So, even though the cancer recovers a little between chemo cycles, each cycle knocks it down more and more until it's so low that it will not recover." Attrition: keep pounding away at the enemy until it just gets tired of the beating and gives up.
REVISITING THE PLAN:
- We take the next two weeks off to let my counts recover and resume with cycle two as planned.
- We will adjust the doses down to maintain count levels throughout the complete cycle.
- Complete two more cycles (for a total of three) and then evaluate whether to stop and do the surgery or to continue with chemo for the total of seven.

So now what to do with all this extra 'feeling good' time? Tonight I umpired a Fall Ball little league game and tomorrow I will Ump a double header. It doesn't get much better than that!

Chemo: week 2 summary

2010-08-24T05:08:00.000-07:00

It is now Tuesday morning (August 23, 2010); the end of my second week of chemo. It's been a good week and we've been on vacation (up north) until yesterday so I haven't kept up on the daily events. Here is the past week in summary:

After feeling really good on Monday, I was a little apprehensive about the second treatment, last Tuesday. It was supposed to be a much shorter time at the chemo place but by the time we got through all the steps it took about 4 hours. A lot more waiting around this time where the first visit was bang, bang, bang, you're done (5 hours but it moved along).

Our regular doctor had duty at the hospital so we met with another member of the team. My tests were all good and my blood counts had only dropped to the minimum normal range. She said they would continue to drop with the second treatment of Gemcenobin today and that I should continue to watch out for infection or contagion. We asked if we could travel 'up north' later in the week and she said it was okay; "... as long as I don't do anything fun." I loved that. She thought we were going to 'the cabin' or playing on the lakes because she said I shouldn't drink lake water, etc.

This week was billed as being an easier week because I was only getting the Gemcenobin and not the Carboplatin. The Gemzee only takes 45 minutes to administer (vs. 2 hrs. for the platnum). But with the anti-nausea prep I-V's still take an hour. As the Gemzee was going in I was hit by a feeling of deep fatigue. Like all the crappy feeling of the previoius week landing right on my chest (whole body). Nurse Kim said this was probably the steroids because you usually don't feel the chemo right away like this. I didn't argue but I still believe it was the chemo.

We stopped to eat lunch on the way home. We sat outside at the resturant and I got a little chilled. I had the sniffles pretty bad before bed and I blame that on being chilled. Sniffles passed as soon as I layed down and never returned.

I was still knocked down when we got home so I layed down for a nap. After an hour or so I awoke to intense panic attack. I have claustrophobia and I have a real hard time in closed places (airplanes, back seats of cars, trains, carnival rides). This was the same feeling only the 'danger' had been injected inside my body and there was no way to get out of the situation. (The last time I tried to fly, I made them go back to the terminal and let me off the plane.) This was a desperate feeling but I have read that you need to distract yourself to end the attack so I grabbed my iPod and went for a walk. I listened to White Stripes (LOUD). Some of those songs I like to sing along, so I did. I must have been a sight to see - but it worked, so I don't care. I don't know if the panic was from the chemo or the steroids (for nausea) but I was able to keep it from returning the rest of the night ( by dodging any little feelings before they can take hold). I didn't have any trouble getting to sleep and slept well through the night.

I had that crappy feeling the first and second day. It's kind of a warm (not a comfortable warm) feeling in the core of my body (and head too, I guess). It's nearly nauseous but not quite there enough to take another pill or take a Queasy Drops. Eating helps - but only while eating - so I try to eat small amounts, often. It's like a weight that's pressing everywhere. I was only on the milder anti-nausea drug (Ondansetron) because nausea isn't one of the big side effects for Gemzee. I still had some of the booster (Prochlorperazine) haven't needed it. summary

It's amazing how much energy you have when you feel good (or not as bad as you expect). I spent most of this time in my workshop; assembling, sanding and finishing on the fourth of a series of wood stools that I've been building. It's nice to have this piece-work to keep my mind focused on something else.

By Thursday I was feeling pretty good so we made the drive 'up north'. I was fine driving the first 2/3's of the 5 hour trip and then turned it over to Wife. I spent the rest of the week visiting relatives (some had driven from Arizona) and working on our tree farm.

I DID do some fun things but I didn't drink lake water. I did check on an experiment I did in planting trees this spring.

April: Transplanted Walnut with carpet

We have an area on the farm has such rich soil so we've had a hard time getting the young trees to survive the competition with the grass. This spring I cut an old carpet into squares (2 - 3 foot square) and layed these around the newly transplanted Walnut.

June: Carpet providing mulch for young transplant

In June, I checked the progress and found all the seedlings had survived and were growing and the carpet was effectively holding the competing grass at bay.

August: Grass has draped over carpet but hasn't encroached on tree.

By mid August (this trip) the grass had draped over the carpet so that it looked like it had defeated the carpet when in fact the carpet was still holding the grass plants at bay and providing effective mulch for the growing tree.

Vandalism at the Baker house.

2010-08-17T06:04:00.000-07:00

Evidence: Click on pictures to examine.

At approximately 2 PM on August 14, Husband (me) was walking out of the workshop when he noticed a pile of wood chips on the lawn.

He looked up to discover that something had chewed a large hole in the side of the Baker house. The vandal had also ripped off the fence on three sides and then chewed up the floor along one whole wall. It was obvious what the vandal wanted but we've never seen this sort of flagrant disregard for property in all the years we've lived here.

We keep a lot of bird seed in that house (mainly black oil sunflower) so we figure the vandal must have been after food. But everyone in the neighborhood knows they are welcome to take whatever they need - free of charge - no questions asked. All we ask is that they don't waste it -- and they allow us to watch.

The Baker house has been hanging in the yard all summer without anythingtaking much interest. It is much smaller than it's neighbors and more difficult to access. And, although it is regularly visited by many birds and anoccasional squirrel, it remains the least popular hangout in the yard. Everyone has been very nice about eating theseed and leaving the house intact. Why wouldsomeone suddenly take such an enthusiastic interest in such a meager supply of food.

The Baker house

The only known witness to this event was Wife, who was in theliving room - which over-looks the yard - when it happened. Wife explained; "I wassitting in the living room, watching TV, when I heard this awful racketin the yard." She explained; "I didn't think much of it because it's common for the birds to make a commotion when a neighbor cat is in the yard."
"Ishould have looked right away."; She admitted; "But I was distracted and by the time I did look - all I saw was the house swinging madly from onit's hanger. "

Of course the first suspect is the rascally squirrel. But it looks like the whole corner of the house was bitten off. This would take much too much strength for a squirrel; or at least a much larger mouth.

Other possible suspects could be deer, bear, opossum, muskrat, gopher/chipmunk, and raccoon. We live in the middle of the city so if there was a bear, we would have heard about it. And a bear would have chomped this whole house in one bite. Deer have been seen in our yard but not for a few years. Opossums, muskrats, and gophers don't usually climb and probably couldn't jump the 4+ feet to reach the house. This leaves the raccoon as the prime suspect.

We haven't had many raccoons since the city switched to covered trash cans but there have been recent reports of sightings in the neighborhood. A waste basket was overturned and emptied on the deck. And, on the night following the vandalism, a large feeder was completely emptied.

So Husband and Wife agree that it must have been a raccoon. Another mystery solved. Which only leaves some minor house repair and maybe a little higher location for the Baker house, and neighboring feeders, in the future.

Chemo; day 6 - back to feeling normal

2010-08-16T21:17:00.000-07:00

What a beautiful day!! Weather is perfect. Looks like it will be the nicest day of the whole week (or maybe even month).

I woke up this morning feeling perfectly normal again. Went for a bike ride (after eating something, of course). Hauled a pinball machine, I've been been fixing for a friend, into my basement where it's closer to me and my instruments. It was getting in the way where it was and this will make it easier for me to work on if it's in my basement. [More about this pinball repair project]

finished version of 8-legged stool

Proceeded with sanding the top of another 8-legged stool. These are some silly little stools (that my brother designed) that are fun - and challenging - to make.

It's starting to register in my brain what the strategy of this Chemo-therapy is all about. This is my day for my body to return to normal. My body has survived this round of 'poisoning' and it has recovered. Tomorrow they will sample my blood to see if my Kidneys are still working and my blood is back to normal. If everything checks out, they have learned that the doses they gave me last week were correct. I believe that if I had recovered yesterday and was feeling normal, they may be tempted to tweak up my doses tomorrow. If I still felt shitty today they may have backed them off a little.

Anyway, today is my day to feel normal again before I prepare for another week of - whatever comes. The weather is great. There is a nice breeze to keep the mosquitoes away so I can catch up on some gardening. With time and energy left over to catch and relocate another chipmunk, work some more wood, go to Perkins for dinner with Wife and Son2, and to end the day with a nice glass of wine. A great day to be alive.

AND I am in a good enough mood to catch up on my BLOGing.

Chemo; day 5 - whole body is a square peg in round hole

2010-08-15T14:00:00.000-07:00

Sunday.
I have run out of nausea pills (except for the 4-hour boosters) but they seem to do the job. And I have those Queasy Drops.
Today I can concentrate enough to write on this blog.
I'm not sleeping at night as well as I was earlier in the week. This is pretty typical; worrying about whether I'm doing the right thing about (fill in the blank)
My body just aches in general. Every part feels a little off kilter; like trying to jam a square peg into a round hole.

The wind has picked up today so I can spend time in the garden without getting eaten alive. I can cach up a little so I weed, pick stuff, prune back blighted tomato plants, toss giant zucchini onto the compost - a shame, I know.

Went to a friends house to help her with her moving sale. I took some flower pots off her hands - nice big ones - that I am using to re-pot some of our deck plants that have outgrown there's. Just what I needed. Now I can use up some of my newly "screened" compost. (I built a compost screening machine, earlier this summer, out of spare parts. It works pretty slick. [Here's a video of the screener in action] )

I drove a chipmunk out to the airport. I'm catching chipmunks in live traps and moving them out of town. Is this humane? They probably won't survive out there but it'sway better than poison. I trap one and it seems like 3 more show up. It's a summer-longdance. We live next to a golf course (on the other side of the tracks -of course) and I've come to believe that people who live down town livetrap them and dump them off at the golf course. There's nothing to eat on the golf course so they find their way to our yard. It's like a relay raceto get them moved out of town. Friends tell us if we didn't feed thebirds we wouldn't have chipmunks. We like birds.

Chemo; day 4 - tired of eating.

2010-08-14T14:30:00.000-07:00

Saturday.
Tired all day. Just worn out. Don't even feel like writing.

Muscles all sort of ache. I can still exercise so I do - and stretch. That helps a little. I take Tylenol for the pain and that helps a lot. I worry about taking Tylenol because it is known to effect the Kidneys and that's the most scary side effect of the Chemo, as well.

I'm tired of eating but I still do. "Keep food going through the system. " Thank goodness for watermelon! (both food and drink). We're checking the internet for smoothie recipe's - there are a ton.

I'm learning how both constipation and diarrhea can be a side effect. (I'll never learn how to spell diarrhea.)

I sand and glue a little on a couple woodworking projects.

There's more golf on TV and friend from NY sent us an iTunes TV series called "IT Group". She sent the first season. We watched the first episode. It's great! They've got those "IT guys" spot-on correct. One reason I retired.

Did I say, I don't feel like writing?

Chemo; day 3 - overwhelming blaahh

2010-08-13T14:30:00.000-07:00

Sleeping through the night is getting harder to do. Wife says this is because daytime naps are getting longer. I'm still zapped by this. I don't feel terrible but just bad enough to not want to do very much. Eating is becoming harder as a lot of things don't sound good anymore (there are still plenty of things that sound good so no fear finding food).

Napping today is easier than yesterday. It's cool and rainy all day - surprise for the forecasters. There's golf on TV (good for sleep) so I sleep all afternoon.

I'm not worried about constipation any more (hmmm) that's always a relief.

The nausea (I'm learning how to spell nausea) creeps in occasionally. I take the booster pill (Prochlorperazine - or #2 on my little chart) and that knocks it down. A friend from NY sent me three whole tins of "Queasy Drops" that seem to work, too (even with the pills, I can feel it lurking). ChemoNurse told me not to wait to take 'boosters' for nausea - knock it down right away before it gets any momentum. (Same thing they told me for pain pills after my biopsy.)

I get out between rain showers to tend my caterpillars. I raise moths as a hobby and the caterpillars are in little netting bags tied to the branches. These need to be moved to new branches after the caterpillars run out of food. [Check out my 'mothman' web site for more]

The garden needs tending but the mosquitos are so fierce that it's not worth the fight. I make a couple quick drives into the 'jungle' hoping the little blighters will think my blood has a bad taste (with all the chemicals) and leave me alone. Wrong.

Wife talks me into going out for dinner - good idea. We hit our favorite fish fry place and split a steak dinner. Crazy! Know what else is crazy? I ordered a Spotted Cow and couldn't get down more than a couple sips. That's crazy!

Chemo; day 2 - Anyone get the license # of that truck?

2010-08-12T17:23:00.000-07:00

All day yesterday (first full day after chemo) and this morning, I was saying; "Hey, this isn't so bad," I was eating and drinking. Food tasted good and I was enjoying having to eat all the time to keep food in my stomach and bowels (doctors' orders). I felt good enough to go about my daily routine. In fact, I felt just fine.

Then - around noon today - it hit me like a truck. I just felt zapped; overwhelmed with 'blah'. All I could do was lay back in my lazy boy and sleep.

Although sleep sounds nice (and I'm usually good at 'sleeping off' the flu) this wasn't an easy slumber. (It's the hottest day of the year and the ceiling fan was going full tilt so it's almost comfortable.) I woke up after a couple hours and had a crushing feeling in my chest and back like I'd slept on my back too long. So I got up and walked around which brought quick relief. I'm not tired enough to sleep but after trying to do things I get fatigued and have to sit down. ChemoNurse said to listen to my body but it's sending me mixed signals. This is like having a really bad flu without the puking (thank heavens for the pills).

The new starter for our boat has finally come in (after waiting 6weeks) so I install that. It'll be nice to get the boat on the waterafter waiting all summer for a break in baseball (work). I was a little worried about going out in the sun but it only took a few minutes to install . I've gotten very good at swapping starters in the process of installing three new starters trying to get one that both fits and works. This one works perfectly.

Damn the torpedoes, full speed ahead!

2010-08-10T14:29:00.000-07:00

After 30 minutes of grilling, my oncologist asked me if I wanted forget chemo and just do the surgery. I said, 'no'. I was satisfied. I was ready to go.

"Let's do this!"

My "chemo nurse" (Nurse) for the day gave us a tour of the facility on our way to the place where I would be spending the next five hours. The place is in one large area of alcoves with each containing one Lazyboy with a tray, a couple chairs, a cabinet, an IV holder thingy, and a TV. Nurse showed us rest room areas, and walked us through a nicely stocked snack areas with coffee machine (that make single cups) and a refrigerator filled of water, juice, soda, etc. All meant for Wife and me - as much as we wanted. She talked about folks who are there over breakfast and lunch who either bring a sack lunch or sneak out to Micky-D's or some other place in the neighborhood for take-out. We can do whatever we want for nourishment. We are to make ourselves at home.

As we walked to my alcove; '#11 chemo way'. We passed another guy who was hooked up. I think nurse had just asked me how I felt and I said; "nervous". The guy smiled and said; "It's not that bad". And he looked like he meant it. I had a new member in my support group.

I got comfortable in my Lazyboy and we started the show. Nurse began explaining what was going to happen today while she prepared me for the I-V (heating pad on my hand) then she ducked out to check if my med's were ready at the pharmacy.

We spread out our stuff - computer, newspaper, my 'log book' loose leaf binder. Wife went to get some coffee for her and tea for me.

By now Nurse was back and ready to connect the tubing - my hand was sufficiently warmed. We talked about ports (where they install a connector permanently into your body so they can just hook up the IV without the needle every time) but that's not for me.

First on the menu was plain saline. They wanted to get as much fluid in me as possible to dilute the med's that were coming.

This was followed by three 'appetizers' for nausea:

a bag of Amend (Aprepitant), the 'expensive stuff', which will be my main defense against nausea for the next three days. (Pills are waiting at Walgreens - $200.00 for three - thank goodness for insurance!)
a bag with Dexamethasone; a steroid that helps the action of the other two ( I won't pass the doping tests for a few days ).
Finally a bag of Zofran; the third anti-nausea.

Once the prelims were done Nurse brought on the main course; Gemzar and Carboplatin. (WHAT? CARBOPLATIN?) I thought I was getting Cisplatin. Nurse assured us that this is equivalent to Cisplatin but is less often used because many of the studies have used Cisplatin, spacifically. The Carbo form has slightly milder side effects. It goes in slightly faster so we could get out of here sooner. But you know why? They can't get any Cisplatin because it's in short supply around the world. I've gotta think there's some reason for this happening - some advantage for me. It was meant to be and I'll be better for it.

While all this was going on (and the chemo was going in), Nurse brought a folder of pamphlets and bagan to explain all about drugs was getting, what I would need to do (how to act), and what I could expect to feel over the next week(s). (much of this information is found at: http://chemocare.com/.) She was surprised that I hadn't received this and WE were surprised that we were getting this WHILE the stuff is going into my veins. But there were no surprises and nothing that would have changed my plans.

Nurse went through the folder and explained everything very carefully. She made us feel like we had her all to ourselves for the duration and basically 'we just talk'. She's been on the front lines of chemo for many, many years. She has seen this procedure evolve over the years and seems to know what she's talking about. And most important, she has the time to talk with us.

She said that I should (just the high points are listed here):

keep hydrated with at least 8 - 8 oz. glasses of water a day. This is less than I'm used to drinking. Fruit juice, fruit, pop cycles, ice cream, malts, shakes, soda, etc. Alcohol and caffine don't count. Dehydration is a dangerous because it leads to lack of thirst, so be careful. I'm thinking; This will be easy - I'm used to drinking lots more water than that in a day.

keep a steady (if minimal) amount of food in my stomach at all times. Eat snacks and meals. Eat something right away when waking (I do this anyway - I always have to eat something as soon as I wake up, no matter what time of the day or night). All this keeps down the nausea and ill effects on the stomach and intestinal lining (actively dividing cells that are effected by the chemo). Doctors orders to eat? I can really live with this one!

Keep clean and avoid contact with sick people - like Howie Mandel. Wash my hands a lot - especially when you get home from being out and about. Again; check!

Be careful not to bruise or cut myself. The chemo is hard on blood cells (red & white cells and platelets) since they are actively replenishing themselves all the time and therefore are blocked from replenishing themselves for the 3 or so days this stuff is in my system. No umping behind the plate. No contact sports.

Do everything I feel like doing (or that I normally do) during the day. Pay attention to what my body is telling me. Rest when I am tired. Don't over do but don't mollycoddle.

Have sex if we feel like it. That's what she said.

We chatted some more about this and that. I mentioned that I was nervous about hearing loss and that led into a discussion about how we liked our hearing aids - she and I wear the same kind - and how busy our audiologists seem to be. I've already made an appointment with my audiologist to get a base-line to see if my hearing suffers but the soonest I could get in wasn't until after 2 weeks into chemo chemo - some base-line.

The first bag of chemical (Gemcitabine) was empty after 45 minutes (that was quick). Nurse hooked up a second - the main course - bag of Carboplatin. This required a connection right at the needle - something about a dedicated line. This should only take 75 minutes since it can go in faster than Cisplatin.

Now that Wife and I were all settled and sufficiently informed (or overwhelmed), Nurse could leave us to digest all this while she attended to other duties.

Wife fetched us each a cup-a-soup (it's lunch time) and some more beverage. It tasted good - no effect on taste buds yet. I made another trek to the bathroom. Gotta keep those fluids flowing.

Wife settled in to a magazine while I dozed off. After a short nap, my snoring woke me up. I fealt refreshed from this power nap.

The oncology social worker, seeing that I was awake, stopped to introduce herself, and some of the services she offers. As the end of the Carboplatin was draining into my vein, Socialworker was talking to us about Gilda's Club when it hit me, for the first time, that I have become a member of a very elite group: Cancer Survivors.

Last questions before go

2010-08-10T13:52:00.000-07:00

Even as Wife and I drove to the first chemo appointment this morning, I wasn't sure whether I was going to do it. My doctor sat with us for more than half an hour and we talked again about how this stuff really works and why we should do it now. The first time we talked it was like Chemo 101 for me. This time I had studied up and I was prepared. I think I gave him the tough questions about side effects and mechanisms and he couldn't side step the answers by saying; " it's too complicated."

After taking a blood sample to test for blood count and kidney function, I met with the oncologist again.

Q&E:

Indiscriminate (blast away and hope we get the cancer).

"The principle function of cisplatin is to bind to DNA during replication which is part of cell division that replaces current cells (organ maintenance and repair) or adds to current cells (normal growth and development or Cancer tumor growth). The consequence of this, is the activation of repair processes which eventually cause cell death (Apoptopsis).

Chemo (cisplatin) attacks the cancer (and all other cells) when they are actively dividing (mitosis). Basically it kills 'anything that moves'. But cancer cells aren't constantly dividing and they don't divide any faster than a normal cell. But cancer developes in a cascading sort of growth and the initiation of apoptopsis has the effect of breaking up these chains and either shrinking the tumor or causing it to disipate intirely.

Side effects on normal tissues is more of a loss of individual cells that are replaced after the chemo leaves. These new cells repair the damage and fill the void and that's all.

Permanent side effects (nerves, kidneys, hearing, sight, mental ability):

Again, the therapy is not a one shot deal producing all or nothing results or side effects. It is a process composed of multiple treatments and cycles of treatments. Each step is carefully monitored for signs of developing side effects (and results) and these signs and symptoms are dealt with before therapy treatments continue. Much has been learned over the years about how to deal with these and adjust medications to maximize effect and minimumize (eliminate) side effects.

Reports of permenant imparements of mental capacity have not been substantiated and have to be taken with a grain of salt. Like all side effects, the over all side effect is a combination of actual physical effect and the individual patients sensitivity to changes in the effected system (tolerance to pain, etc.). Or - some people are just whiners.

So in the end it came down to his three main arguments:

We don't loose anything by doing this first. (two or three rounds of chemo)

We get started faster if surgery finds cancer has escaped the bladder - nipping it in the bud. Many studies, and general consensus in the field has this making a difference with this cancer.

Won't impact surgery. I will be perfectly ready for surgery two weeks after last chemo.

Chances are good that even if they don't find any evidence of spread during surgery, They would still want to do some chemo and I'm in much better shape to successfully handle chemo now than I will be after surgery.

Finally he asked me if I really wanted to forget it and just do the surgery and I said; "no". Lets do this.

So we did it.

Questions and Answers

2010-08-09T11:50:00.000-07:00

I've talked to my urologist. I've talked to my surgeon. I've talked to my oncologist. I've dug through the internet for whatever I can find (reputable sites) on the bladder cancer and it's treatment (surgery, chemo, radiation). My head is spinning.

Everyone I have met in my brief tenure with cancer treatment (doctors, nurses, PA's, friends ) have told me to ask questions - there is no dumb question. Right? So this morning I started calling around to ask some of my questions.

First I called my surgeon' office and left a message for a call back. I had such a nice, and informative, talk with him last week and I was comfortable with the idea of surgery. After talking with the oncologist I felt a little disoriented because chemo is something I knew nothing about and he was throwing it all at me (a friend says; 'Chemo 101'). I just wanted to get back to the 'simple' concept of surgery; at least something I thought I understood (cut here, stitch there, wake up, press "the button", heal ).

The surgeon's nurse called me back within 30 minutes. She said he was unavailable to talk but she could send him my questions. How do you put what I said above into a question? After several attempts I finally said to ask if, in his experience, people with my form and degree of this cancer generally opt to have neo-adjuvant chemotherapy. And if, in his experience, this is the 'standard of care' the oncologist claimed. That's all I could come up with.

Later in the afternoon - while we were at the fair - she called me back and said the surgeon agreed with this course of action and said it has demonstrated good long term results in treating and iliminating the form and stage of cancer that I have.

Then I called my oncologist. Again, I got a service and I asked for someone in oncology group to call me back to answer some questions raised on the internet. Within 10 minutes an oncology nurse, called me back. We had a nice long chat and I posed my questions about side effects and mode of action (based mostly on what I've been reading on-line).

Indiscriminate (chemo attacks all actively dividing cells): Blast away and hope it hits the enemy (carpet bombing).

she said this is a good one to ask the doctor - she said please ask the doctor.

Nausea: One of the primary side effects of the Gemzar and Cisplatin.

she said this is something they have learned how to treat very successfully and she listed out (and entered orders for) the following:
Amend - the front-line defense (and expensive). IV during chemo and one per day after.
Prochlorperazine (this is the fine tuning - take if I still feel nauseous )
Zofran (Ondansecon) - second regular defence. IV during chemo and every 12 hours after.

Nerve damage: I'm most concerned about the permanent or long term effects on the nervous system and even brain function.

Nerve damage (Neuropathy) - like all the side effects - is closely monitored during the treatment cycles. If symptoms appear, dosages and even chemicals may be adjusted between treatments and/or cycles.
Chemo is administered in cycles (doses) over time. Side effects don't happen all at once (like a light switch); they are cumulative. We (the oncologist and me) carefully evaluate effects and progress after each treatment and cycle and make adjustments if necessary.
Agreeing to chemo is not signing a contract to continue to the end. These side effects If, at any time, we decide the treatment is worse than the disease we can stop and move right to the next step (surgery). I have been told this but all the ramifications hadn't really sunk in - it was a relief.
Again, this is a good one to ask the doctor.

Loss of hearing (temporary and permenant): I am already half deaf (40-60% loss).

Again, this is monitored and adjustments made. I made an appoint with my audiologist for a hearing exam. It's been too long since I've had one anyway.

Finally, she said to think of cancer as a thistle that we don't want. Surgery goes after the thistle but not any seeds. Chemo goes after both.

I've spent 60 years taking - what I consider to be - very good care of this body. I work out. I stay in shape, watch my weight, don't smoke, avoid salt and sugar (AND high fructose corn syrup). All that.... And each new doctor I meet is amazed that I don't take any pills. I don't want some 'arbitrary' (unecessary?) treatment to undo what I've done just on the chance it will be benificial.

But, I much better after these discussions - I've done all I can do for now and the next step is a discussion with my oncoligist before treatment.

Wife and I decided to go to State Faire in Milwaukee. We've never been there and always say we should go.

Is neo-adjuvant chemotherapy the right thing to do?

2010-08-09T06:20:00.000-07:00

After reading up on Cisplatin and other Chemotherapy's, I'm starting to question whether it's a good idea to do the chemo before surgery. According to what I've been reading, this stuff isn't as targeted as I thought. It kills any cell in the body that is actively dividing (it binds to DNA during cell division).

This article was one of the references listed on the Wikipedia site for Cisplatin (It's long winded but raises some good issues - at the beginning):
Anti-cancer Agents: A treatment of Cisplatin and their analogues

Cancer cells are really no different than other cells that are actively replenishing themselves as part of their (or their organ's) function like Bone marrow, nerves, intestine linings. It also attacks kidneys (big time) and inner ear and even eyes (and of course hair follicles).

My Oncologist argued that although chemo is a 'blanket bombing' sort of strategy it would be good insurance against the chance (perhaps small) that any cells have moved out of the bladder and gives us a leg up on attacking them if they have. This is an insurance policy, but like any insurance, there is a cost to reducing the risk. I thought it was interesting that he didn't want to start treatment that day because he was afraid that IF there were complications from chemo, I would feel like I had been pressured (hard sell) into chemo.

I'm just thinking I should talk again with my surgeon to see what he's seen and what he thinks. These guys are specialists and it seems like they are pretty tightly focused so it will come down to me in the end.

I've been talking with friends (on Facebook and others) who have known people who have gone through this and I don't remember hearing about pre-operative chemo.

In this case clinical studies don't seem to be much help. There's one study (10 years old) that showed a significant improvement with this strategy but they weren't using this same combination of chemicals.

Meeting with Oncologist

2010-08-06T11:00:00.000-07:00

We met with Oncologist this morning. He had a completely different perspective, it seems, for treatment priorities and timing of treatments. We had looked him up on the internet (Dean web site) and Debi said he didn't look as scary in person.

He took a complete history (it seems like we need to do this for every doctor we see - and they're all using the same software and accessing the same databases). He wanted to know all about my family - parents, siblings and children. He was amazed that I don't take any medicine (every doctor is amazed at this - maybe my brother is right when he calls them all pill pushers). He wanted to know about any aches and pains; problems climbing stairs; whether we own a house; problems with any bodily functions. These were new questions. (I need to start a log of symptoms, treatments, visits, surgeries, etc. )

He was very much in favor of beginning chemo even before surgery. He says there is no evidence of spread (based on CT scan and observation) but it only takes one or two cells getting into the liver or bones to cause problems in the future. He maintained"you can live without a bladder but not bone, liver, or kidney.

He is strongly recommending a course of neo-adjuvant chemotherapy. Start right now and attack any cancer that may be floating around - both in the bladder and anywhere else it may be - and then have the surgery to remove the bladder. The alternative is to wait till after I recover from surgery and then begin chemo. This will delay beginning this attack for months while I recover from surgery which would give any cells that may be outside the bladder time to take better hold in these other places and even spread more.

He says what we're going for is disease free in 10 years not only survability. There's a big difference.

At least a two month course of 3 per month with one week off between. If I tolerate the therapy we might do more. The total he recommends is 6 cycles. This can be split before surgery and after. Or all at once.

He really shocked us by asking if I wanted to start today!! I recoiled at first but after a while I reconsiderred. He said it probably was best to wait till next week to give me a chance to consider. His arguement was that there are risks and if we jump into this without due consideration, I may feel like I was forced and regret it later.

The treatement he recommends is based on Cispatin with
gemcitabine/cisplatin (jem-SITE-ah-been-sis-PLA-tin)

From Cancer Society Web Site; "A chemotherapy combination used to treat malignant mesothelioma, advanced non-small cell lung cancer, advanced bladder cancer, advanced cervical cancer, pancreatic cancer, and epithelial ovarian cancer. It is also being studied in the treatment of other types of cancer. It includes the drugs gemcitabine hydrochloride and cisplatin. Also called gemcitabine/cisplatin regimen."

He has scheduled me for the following (unless I change my mind):

Tmt one - Aug 10 with gemcitabine/cisplatin combination for 5 hours. The length of time for this first treatment is because cisplatin can be very hard on the kidneys and must be administered very slowly and with lots of fluids. Otherwise it can build up in the kidneys and cause damage.
Tmt two - Aug 17 with gemcitabine alone for 45 min.
tmt three - Aug 24 with gemcitabine alone for 45 minutes.
one week break and the repeat this cycle for at least one more before surgery.

There are two studies listed Cancer.gov web site relating to neo-adjuvant chemotherapy (pre surgical):
First from 2000 where they spacifically studied bladder cancer. The results were clear but the study was relatively small and that 7 previous studies had failed to detect any benifit to this approach. This study used three rounds of chemo prior to surgury with another Cisplatin based regime (MVAC - methotrexate, vinblastine, doxorubicin, and cisplatin).

The second study sited was published in 2010 and was on biliary tract cancer (liver associated) in locally advanced stages or metastatic (spred into system). They compared cisplatin alone and cisplatin with gemcitabline regimes. This study was aimed at a condition is relatively rare and nearly always fatal (5 year survival is 15 percent). This treatment was very successful at increasing the number who had progression-free survival. The disturbing result was the side effects of the therapy. Althought noone died due to the treatment there were hematologic toxic effects in 32 percent of the patients who were given the gemcitabin/cisplatin regime.

Or oncologist says they have learned how to mitigate these effects and he assures us that the risk is extreemly minimal, especially compared to the potential benifit of increasing the odds of being CANCER FREE after 10 years.

This is all very compelling.

Notes from first meeting with the surgeon

2010-08-04T11:30:00.000-07:00

Debi and I had our first meeting with the surgeon who will be doing my cystectomy (removal of the bladder). We both came away feeling much better - or more confident - that we can beat the cancer and that living without a real bladder (and prostate, etc) won't be all that bad.

I had a few pages of questions and he actually answered most of them before I even asked. He's a young doctor (Debi says he looks more like a rock star) and he exudes both confidence and competence. He has done a ton of these (a couple per month) and carefully went over the procedure, available options, chance of success (and what they do to insure/verify success) and what to expect for recovery and quality of life. He spent a lot of time on how the new system will work, and what problems others have had before me - and what they did to deal with it.

Before we schedule the surgery he said that recent studies have shown taking a 3-month course of chemo before the operation has had some positive results in reducing re-currence of the cancer after the operation. He set up an appointment for us for this Friday with an Onocologist to discus whether it would be a good idea in my case.

The other decision I need to make is what sort of replacement I want for the bladder function. Either:

1. an Ileal Conduit which takes a small piece of my small intestine and forms a tube that connects the kidneys to a stoma in my stomach wall. This requires wearing a pouch on the stomach.
2. a neo-bladder which uses a couple feet of my small intestine to form an internal reservoir that is hooked up to all the current plumbing.

There are pro's and con's for both. The first requires one to wear a pouch all the time. The second has some problems for some people with leakage. I'm leaning towards keeping the current plumbing. It'll take some getting used to but I'm pretty good at making things work.
Other things:

1. He makes a 4" incision from the belly button down (some cut that and continue around the belly button an inch or so higher. (His specialty is minimal invasive surgury.) Some have started to use robotic surgery but that only works for removal

2. He uses a nerve sparing technique in which he carefully moves the nerves that control the mechanism of erections out of the way when they remove the prostate. This helps retain this function in the majority of men.

3. He will take the small lymph nodes next to the bladder. I asked if I'd miss these and he said there are millions in the body and these are just two small ones. They send these to be analised for presence of cancer cells. If the cancer has made it out of the bladder these are the first place it would show up.

4. So how do you pee with this new bladder. It doesn't have muscles like the old one so it cannot expel the urine without help from outside. So you sit down and relax your pelvis muscles while pressing down and in - with your arm - just above the pelvis. This forces the urine out of the new bladder. No more standing up to pee - but there are a lot of people who have dealt with this problem for a long time (eg. women ) so I'm not too worried.

5. Time: the actual surgery will take between 3 hrs (for the ileal conduit) to 6 hours for the neo-bladder. Up to 5 days hospital stay to make sure the intestine wakes up and there are no problems with the new bladder. Full recovery can take up to 6 weeks - but it's usually faster.

6. follow up chemo or radiation depends on what they find in the tissue samples from the different organs removed.

Meanwhile I can do anything I want - physically. So I've signed up for a tournament this weekend to ump a couple games. Feels good.

day five - is it okay to wait

2010-08-01T08:00:00.000-07:00

Woke up this morning wondering whether it's a good idea to wait this long before surgery. Shouldn't we get the bladder out of there ASAP? Will delays give it time to spread?

I don't have much control over this because we have to wait for the surgeon to fit us in to his schedule and wait for a spot in the operating room. We are scheduled to meet with the surgeon next Wednesday and will find out all this at that time. Maybe he's already got me scheduled since he knows I'm coming and, if there's urgency, he will certainly be proactive.

I have visions of the remnants of the tumor - the part that was already imbedded to deep in the muscle wall of the bladder to get out with the TURBT procedure last week - being all pissed off and - feeling threatened - sending out all kinds of seeds (like a tree that has been wounded will sometimes bear a large crop of seeds).

Again, there is not much I can do but wait - and be prepared questions (this and more).

Planting more trees - getting to work

2010-07-31T18:00:00.000-07:00

I brought up a bunch of Swamp White Oak seedlings to transplant at the farm. These acorns were collected last fall from a tree on campus (UW- Madison) and have been growing in some "tree tube" pots in my back yard since spring.

Every time we come up we have trees to plant (it seems). In the past 12 years we have planted well over 100,000 trees on that 80 acre farm (ex- dairy farm) but it seems like there's always room for more. We've had great success, in general, but there are areas where we've had trouble establishing a forest.

We're trying some different techniques to increase the chance of survival for these young seedlings. This time we surrounded each transplant with carpet pieces and covered that with pine boughs (to hold down the carpet). First we mowed a strip to knock down the weeds and grass so the carpet would lay flat. Our total here was about 15 trees (some doubles). This is a low area in the field where we have either not planted or the trees we have planted have drown out. Swamp White Oak are supposed to be tolerant of some standing water (wet roots).

Normally we wouldn't try to transplant this time of year but this year has been so wet (and continues to be forcast) that we feel a little adventurous. And these seedlings are groing so fast they need to be transplanted (root bound?).

Jordan, Roland and I spent a couple hours on this - it always takes longer because we look around at other areas while we're up there. The wet year has helped some of the slower trees get a jump. Many Walnuts have been just marking time at one to two feet for over 10 years. (We planted these from seed while there was still standing corn on the land - the last corn planted, obviously.)

There are also many of our White Oak and Red Oak, from previous transplanting, that are finally taking hold and over-topping the weeds. The Pine and Spruce have taken off over the past 3-4 years and are establishing themselves nicely. We believe these evergreens are functioning as a wind break to slow down the biting cold winter winds that whip across the plains and may be nipping the buds on the hardwoods.

Visit my web site for more information on this reforestation project ...

Lunch at Wins

2010-07-31T14:00:00.000-07:00

My sister invited us over for lunch of lemon chicken and corn on the cob. She also invited a few family members who live in the area. It was a great time and great food. This was a spur of the moment sort of thing so everyone had to scramble some to get there. One of my brothers was meeting us at the farm and doesn't have a cell phone so Jordan and I drove down there (20 miles) to pick him up for an unexpected lunch.

We were in a little hurry to get to the farm and get busy so we didn't hang around too long to chat. But we all had a chance to catch up and I got a lot of support.

day four - worry about operation itself

2010-07-31T10:00:00.000-07:00

Today I woke up early worrying about the operation itself. This is a perhaps a good change since the cancer is taking the back seat for a while, at least.

The surgeon said the incision will be like hernia surgery and I am remembering when Debi had that surgery. She was in a great deal of pain and couldn't take the pain stuff because it make her sick (and one thing you DON'T want with stitches in your stomach muscles is to throw up). It was amazing how much of your normal movement and bodily function involves the stomach muscles.

I think I'd rather worry about recovering from surgery - which has finite healing time and more definate results - than cancer which seems to be wide open and much more indefinate.

Anyway, I went back to sleep and actually slept in (till 9:00 which is unheard of for me).

get out-a town

2010-07-30T11:53:00.000-07:00

We're all leaving town and going up north to work on the farm and to visit with all our relatives.

This is both a diversion and may be the last i am able to travel for a couple months. There are projects waiting at the farm that have been waiting for August and the end of summer baseball season so I can attend to some of them. So we pushed our planned trip up a week so I can be back for our appointment and subsequent surgery.

I hope to visit with family and friends who live up there.

Day three - not so bad

2010-07-30T10:00:00.000-07:00

Today is not so bad. I'm either not thinking about it or I've gotten used to the idea a little bit. I don't catch myself shaking.

We have a task - driving north to visit family and work at the farm - which is a distraction at least.

I'm glad Jordan decided to come with us this trip. Between college and other commitments he has not been to the farm for too long (according to me). He has a broken finger on his right hand (and a soft cast) but I tell him that his left arm is strong and between the two of us we will be able to get some things done (I'm not supposed to lift anything heavy for a few more days). And we can talk about the farm and it's future , a little.

Day two. Shakes

2010-07-29T10:00:00.000-07:00

Still numb this morning. As I go around doing normal things in the morning I catch myself shaking all over. I'm scared. I ask Debi about it and she's the same way. We're trying to keep a positive attitude but that's not being easy to do. When I catch myself shaking I try to shake it off and focus on something I need to do here - some chore - like mowing the lawn or finishing a sanding/refinishing project I have in the shop.

We start calling relatives (or start getting calls) and this helps a lot. My brother-in-law had a massive heart attack a few years ago and insists that attitude is everything. He went back to work right away (sooner than the doctors thought) because it was driving him nuts just sitting around. He says this helped him a lot.

Both Debi and I are retired so we don't have that external framework of duties and responsibilities to get lost in. So we try to bury ourselves in our day to day chores and projects. But the shaking seems to come back.

Day one - day we got the news.

2010-07-28T11:43:00.000-07:00

Too numb to think and when we think it's hard to think of anything else. So we dig in to our normal daily routine and tackle chores that are waiting. I re-pot some tree seedlings. Debi weeds the gardens.

I call my brother who says; "just get in there and get it taken care of and then get on with the next project". Good advice but now we have to wait a week to see the surgeon.

We're supposed to make a list of questions to ask. We've already Googled it and checked out Web MD etc.

I woke up last night wondering why there are so few choices. Jordan said; "don't worry about that." It only seems that way because this one choice is so much better than all the rest. It only seems like one choice.

Post Op appointment - kick in the stomach

2010-07-28T06:44:00.000-07:00

Urologist has some bad news. It is in fact cancer and it has progressed into the muscle wall. This is an aggressive form and the recommended treatment is to remove the Bladder before it can spread.

This is the first time in a long time that a doctor has said that; 'someone as young as you' would dictate a particular treatment. Usually it's; 'someone my AGE'. There are many options for replacing the function of the bladder and I am young so they will probably take a small section of my intestine and form a pouch to replace the bladder. They connect all the old plumbing (ureters from the kidneys and urethra to the penis). Since they keep the nerves with the intestine when you need to empty the bladder you get a feeling of fullness. It's a different sensation but one that you can get used to detecting.

Controlling continence is done with the muscles around the urethra. This is how it's normally done but as we get older we get lazy and let the Prostrate muscles control. She recommended working on exercising the old control system before the surgery (to restore muscle tone) since the prostrate will be taken out with the bladder (it's all one thing).

It's hard to remember much after you hear the word 'cancer'. We're both used to the shock the body takes in a tragedy and the numbness in the body (and brain) when it kicks in for self defense.

TransUrethral Resection of Bladder Tumor

2010-07-23T11:30:00.000-07:00

Trans urethral resection of bladder tumor.

TURBT.

All the preliminaries take a lot of time.

Vital signs
new temperature sensor is just passed across your forehead. ('brain scan')

Fitting for IV.

Visit with Anesthesiologist - George. He asked if I had any family history two times during the visit. We have a new word in our family vocabulary; 'A George'. He is an MD.

Hook up antibiotics to IV.

Take two pills for nausia from anesthesia. PA and computer caught discrepancy in order (nice). DR had injection on 'chart' but PA knew that he always gave it in pill form. Humanity in system. Nice.

Wait. and Wait some more.

1:30 Dr stops in to say the show is ready to start.

Ride to OR. Jack up gurney and scoot over onto UroSkope - don't hit head on display. They have a special setup just for this sort of thing. Impressive.

Attendent says 'I've attached a drip that will start making you drowsy and a little numb. I tried to remember the bed time prayer: "Now I lay me down to sleep. Pray the lord my soul to keep, If I die before I wake, Pray the lord my soul to take. I got most of it. That's all I remember.

I woke up at a quarter after (something). Another person was asking me how I felt. I was fine. She said I had a cathiter. I asked if Dr had put the chemo in. She said 'yes'. I said 'that's good'. It meant that she didn't have to cut too deep.

She asked who I had waiting. I said "Yes". She asked if I wanted her to go get her. I said 'Yes, please'.

After about 45 minutes PA started a flush procedure to get the chemo out. She had to run a gallon of saline through my bladder. Since they only put in the 2-way cath. (only one tube - since they were planning on me keeping it in to go home) she would have to fill me up and then drain me through the same tube by swapping lines. She could do little under a quart per. and it took about an hour.

I took the first pain pill. Mainly for the sore penis whenever she moved the hose it stung.

Scheduled appointment with Urologist in 5 days to discuss results. Went home with catheter.

Pre-Op physical

2010-07-19T13:00:00.000-07:00

This was sort of a formality since I had just had my annual physical. We chatted about the surgery mostly. He said I'm pretty much caught up on my tests. Probably need an EKG and another urine culture before the surgery. Set up both of these for Wednesday at Dean East Lab.

His spin on the procedure is that she's going back in to get a better look at where the tumor is. Location, Location, Location - you know. She was trying to tell me this but it takes a while to sink in. It makes a big diff as to how they will treat it and how hard it will be to kill.

Urgent care

2010-07-17T11:00:00.000-07:00

I have been trying to drink a lot of water at the request of my Urologist. Since the Cytoscope visit I have had to get to the bathroom quickly whenever I got up from sitting or laying down. This morning was the opposite. It's seemed like I couldn't go and I had a great deal of pain and bloated feeling. I was afraid I was filling up and stuck.

I went to the urgent care and quickly got to see a doctor (they weren't too busy yet). After hearing about the possibility of needing a catheter, they found a bladder scanner. This is an ultrasound-like device that registers a number that corresponds to how full your bladder is. Mine registered empty.

Apparently the pain from the infection was just like the pain from an over full bladder and this had caused me to stop drinking water. The doctor said I was on the right course of treatment (antibiotic) and this should clear up in a couple days. She wondered why I hadn't been placed on antibiotics immediately after the cytoscope procedure - said it used to be SOP.

I had a couple cups of water while still in the exam room and was able to pee before leaving the clinic. Whew.

Feaver Pitch

2010-07-16T21:30:00.000-07:00

Woke up this morning feeling like I have a flu. I feel terrible and have a fever of 99.5.

I called Urologist (nurse called me back) and fear I have an bladder infection from the cytoscope procedure. Scheduled me for urine sample and subscribed antibiotic course (Ciprofloxacin) starting right away. Assume it's an infection and get after it right away - it takes couple days for results to come back and three days to clear it up. And there is a weekend coming up.....

I slept all morning - I was conked out till after lunch and didn't even feel like going to the clinic for the sample till after 2.

Maybe I overdid yesterday by working two 7 inning games behind the plate in the morning followed by a 7-inning game (on bases) last night. I felt fine in the morning but started feeling bad in the afternoon and the evening game was hard to get through.

This evening I had bad pain in lower abdomen and a real feeling of bloating. I was afraid I wasn't able to pee and I called Dean On Call. I talked to on-call nurse who agreed that it sounded like a bladder infection.

She me back to message center to talk to Urologist's on-call person.
Urologist called back - herself! Said to take second pill today ( don't wait 12 hours) at bed time. She said if fever got over 101 or felt like I wasn't peeing then go to emergency room or urgent care. Felt better after call

Tylenol is working for fever. Was up to 100.5 - now down to 99.

Cancelling Games

2010-07-16T14:00:00.000-07:00

Called Umpire coordinators to turn back games for remainder of season. This infection will keep me down this weekend and surgery next Wednesday which may leave me with a catheter for 5 days.

I've already worked over 100 games this year and maybe that's enough.

Visit with Urologist - CT Scan - Cytoscope

2010-07-14T21:59:00.000-07:00

CT Scan showed lump on inside bladder wall so Urologist needed to go in for closer look. I was prep'd for a Cytoscope. They but a camera up your penis (urethra) to look at the inside of your bladder. This isn't as bad as it sounds - really. And I got to watch as she gave me a guided tour of my urethra, prostrate, and then the Bladder. As we scanned around the bladder we saw a fingertip sized growth that looked "angry" to me (and her). It was red and white and very rough surfaced.

After getting dressed we had a discussion about where we stood. The tumor was still fairly small but it looked like cancer to the urologist (90% sure). The next step is schedule surgery (Trans Urethral Resection of Bladder Tumor) for biopsy & removal. "we need to get that out of there". If it hasn't gotten into the muscle wall this may be all that's needed. After removal they will pump in a chemo solution for an hour and I may or may not leave with a catheter.

first visit to doctor

2010-07-09T09:50:00.000-07:00

Tests show there is blood in urine.
Doctor checked my back for tenderness around kidneys.
Check for hernia, testicular nodes, prostrate for tenderness and enlargement. All negative.

I told him:
1. urethra is tender - like I passed something through it.
2. felt something pass when pee was red.
3. all three times followed long hot game working plate (in squat)
4. first time (dark) was 10 days into doxycyclin course for possible lyme diagnosis (sore and swollen wrist).

He will schedule CAT scan and appointment with urologist for cytoscope.

Dr. Says I need to be seen

2010-07-08T09:45:00.000-07:00

I called my doctor who quickly told me this is not a result of antibiotic or squatting while working the plate on a hot day. He said I needed to see a doctor and ordered me in for a urine sample.

Blood in Urine - three strikes

2010-07-06T21:00:00.000-07:00

Tonight I got home after umpiring two legion games at Cottage Grove and when I pee'd it was red. This is the third time this has happened in two weeks so tomorrow I'll call my doctor.

The other two times happened within the past two weeks and only after umpiring the plate on a hot day as well. After I cooled down and had some more water the pee was normal color again so I didn't think much of it. I remember feeling like I'd passed something (maybe a stone) but it didn't hurt, particularily, and I couldn't see anything in the toilet.

The first two times were while I was taking an antibiotic for possible Lyme Disease (Doxycyclin 15 day - June 3 to June 18) and one of the side effects listed was dark urine or red urine.

June 12, 2010 first noticed blood in urine after umping behind the plate at a 14 year old - 7 inning - game.
June 17, 2010 second noticed blood in urine after umping double header (both behind the plate). Two 7 inning games.