It's only a routine six-month checkup; ultrasound the kidneys and x-ray the chest; check the blood and urine; then meet with the surgeon/urologist to discuss the results. Why am I so nervous? Why am I scared?
I'll admit it; I'm neurotic. The x-ray tech keeps me for a second set of chest x-rays and when I leave she says; "Good Luck." What does she know? What did she see? The ultrasound takes about 20 minutes with full bladder and another 10 minutes with empty. Did she also see something? I've seen the results of my blood tests and my kidney function indicators are still out of spec. I've had some pain in my back on the left side - the side of the kidney that was having problems a year ago. This could be muscle strain from a recent fall or an after effect of the train trip we just took to Arizona and back. But it is a pain where that kidney is located (I've learned this location from past surgical procedures. )
Good News!
So my wife and I wait in the doctor's office for him to come in and give us the results. She thinks I'm silly to be worried. The surgeon enters with a big smile and he says; "Everything looks good." I was silly to be worried. I'm doing just fine and there's nothing to worry about. There is no sign of cancer cells in the urine and no sign of cancer anywhere else. Oh, what a relief!!
Questions:
But I don't let him off that easily. What about the back pain? What about the elevated creatinin? What about my left kidney? So he sits down at the computer and says; "let me show you what's going on." We look at the scan of the right kidney (normal) and then the left kidney (which shows a large dark spot that he says is the swelling that is still present). He then brings up the scan from 6 months ago which looks pretty much the same - and the same as the scan from after the stent and the breaking of the scar tissue that was blocking flow from the left kidney at the ureter connection to the neo-bladder. This is evidence that damage has been done to that kidney and, even after flow was restored, the kidney has not been able to recover. He says that kidneys don't like having their flow blocked (either this way or by kidney stones lodging in the ureter) and the damage can be permanent.
He went on to say that my blood tests have shown no significant changes in kidney function since this blockage was removed. This means the right kidney is working just fine and is probably doing all the work - which it is perfectly capable of doing and many people live long and healthy lives with only one kidney.
"Could this damage have been caused by chemo?" I know chemo can be hard on kidneys and I have been thinking about whether it was the wisest decision to opt for chemo when it wasn't absolutely necessary (this is called prophylactic chemo). He said; "No, this was definitely caused by an undiagnosed blockage from the formation of scar tissue after the surgery." And this isn't the first time he has told us this but, you know, it takes a while to accept. But it's starting to sink in to my thick skull. I only have one kidney. Live with it.
"Could the scar tissue have re-formed and that blockage still causing problems?" That's certainly possible but not likely since the levels (kidney function indicators) in your blood did not change when we had the stent in place and there was maximum flow from that kidney (they used a die marker to check for flow both before and after the stent which showed the flow was blocked before and full flow was restored by the procedure). And the levels have not changed since the stent was removed. If the pain persists they may try the stent again and if that relieves the pain they may remove that kidney.
"So what happens if the other kidney fails?" He assures me that I'm in very good shape and the right kidney is functioning just fine and there's no reason to believe it will not continue to do so. My current levels have been constant and they should be considered to be my new normal.
"Can I keep the neo-bladder with only one functioning kidney?" I remember him hinting - in past discussions - that they don't like to have a neo-bladder where there is only one kidney. He said if we start seeing problems with the remaining kidney they may want to try a catheter for a while to remove any restrictions to flow. And if that works, they will probably want to remove the neo-bladder.
"What about transplants?" They won't transplant when you have one functioning kidney. They also require a certain number of years cancer-free before transplant. Again, he says, this is such a remote possibility and so far down the road that I shouldn't be worried about it now. I am doing great and all indications are that I will continue to do fine.
He asks me how I am managing with the neo-bladder. Am I still having trouble at night? How am I during the day? I have always been fine in the daytime and I am constantly getting better at night. Still a little leakage but not more than a "maxi-pad" can handle. I get up a couple times at night but usually there's not much to go.
"Is it alright to really bear down - will this cause reflux up into the kidneys?"
So, he says he will be contacting me in another six months to come in for tests. Then they will probably just call me with the results. I'm doing just great and keep up the good work - or something like that.
It's all good.
Friday, March 9, 2012
On feedback.
I've been doing this blog for a year and a half. It's the first blog I have ever done so it's been a learning experience for me; in and of itself. I have looked at blogging as a tool to help me work out issues and organize thoughts. When I sit down to write I don't think of any particular audience to whom I may be writing - I'm not writing to anyone in particular. When you write to someone in a letter, email, or Facebook message, you have to temper your words and thoughts so that they don't offend, or confuse, or make them think you've gone crazy (or off the deep end.) So, in this Blog, I write to (and for) myself.
Well, if that were true I'd just keep a journal and not publish this blog. So, yes I do think of other people reading this (at least in some point in the process). I don't really believe anyone would read it, however, because there are just so many words being written these days that I can't imagine anyone having the time or the interest in reading mine. Everyone, it seems, has something important to say. I do, in fact, temper my words in case someone who knows me stumbles across this. And there are some subjects I don't talk about in case my nieces or nephews (or grand kids) may read it. I know, at this point in my life, why should I care what other people think about me? But I do.
This troubles me a little because I think it detracts from the value of the blog. I am getting better and I continue to strive to improve. I no longer worry about turning off prospective employers or alienating prospective constituencies (I am growing more comfortable with retirement and have never aspired to public office). So to these I say; "really, what's it to ya".
Actually, the closest analogy I can think of is that, in blogging, we feel as an actor on a proscenium stage with the audience behind the Fourth wall. This works on my head in a couple ways: The audience is 'hidden' - at least from my consciousness - which is freeing (but I still know that there is an audience and that it's my job to keep them interested - give them they're 'money's worth'. But it also means that I have no way of knowing if the theater is empty and I'm just writing to hear my own voice. This also plays with my head ( I have to admit).
Enter the 'comment'. Up until now I have pretty much ignored the comment field in this blog. I have received feedback both by phone and by email (and in person) and most of it has been very positive and supportive. Many people have told me that they find the process of posting a comment both confusing and non-intuitive and most have just given up. My curiosity has finally gotten the best of me and I tried to comment (actually post a comment to respond to a comment to one of my blogs). I couldn't make it work at first and after a couple days of trying, and looking at other sites, I changed the settings to open a pop-up window for the entry of the comment. Now if you have a Gmail account (at least) you can post a comment as someone other than 'anonymous'.
I like comments and other feedback to my site. So far I don't think it's affected my primary mission in keeping this blog. When and if you decide to comment please know that my ego is rather fragile so please be kind.
Also, I do have this blog configured to send me all comments so that I can screen them before posting (via email). So if you want to contact me without posting just write a comment and note that it is private and you don't want it posted to the blog.
Thanks
Well, if that were true I'd just keep a journal and not publish this blog. So, yes I do think of other people reading this (at least in some point in the process). I don't really believe anyone would read it, however, because there are just so many words being written these days that I can't imagine anyone having the time or the interest in reading mine. Everyone, it seems, has something important to say. I do, in fact, temper my words in case someone who knows me stumbles across this. And there are some subjects I don't talk about in case my nieces or nephews (or grand kids) may read it. I know, at this point in my life, why should I care what other people think about me? But I do.
This troubles me a little because I think it detracts from the value of the blog. I am getting better and I continue to strive to improve. I no longer worry about turning off prospective employers or alienating prospective constituencies (I am growing more comfortable with retirement and have never aspired to public office). So to these I say; "really, what's it to ya".
Actually, the closest analogy I can think of is that, in blogging, we feel as an actor on a proscenium stage with the audience behind the Fourth wall. This works on my head in a couple ways: The audience is 'hidden' - at least from my consciousness - which is freeing (but I still know that there is an audience and that it's my job to keep them interested - give them they're 'money's worth'. But it also means that I have no way of knowing if the theater is empty and I'm just writing to hear my own voice. This also plays with my head ( I have to admit).
Enter the 'comment'. Up until now I have pretty much ignored the comment field in this blog. I have received feedback both by phone and by email (and in person) and most of it has been very positive and supportive. Many people have told me that they find the process of posting a comment both confusing and non-intuitive and most have just given up. My curiosity has finally gotten the best of me and I tried to comment (actually post a comment to respond to a comment to one of my blogs). I couldn't make it work at first and after a couple days of trying, and looking at other sites, I changed the settings to open a pop-up window for the entry of the comment. Now if you have a Gmail account (at least) you can post a comment as someone other than 'anonymous'.
I like comments and other feedback to my site. So far I don't think it's affected my primary mission in keeping this blog. When and if you decide to comment please know that my ego is rather fragile so please be kind.
Also, I do have this blog configured to send me all comments so that I can screen them before posting (via email). So if you want to contact me without posting just write a comment and note that it is private and you don't want it posted to the blog.
Thanks
Wednesday, January 11, 2012
Exercise- The Latest Wonder Drug for Cancer Patients
I just received the following from a reader. I think it fits right in to what I've been talking about so I've included it here.
Exercise- The Latest Wonder Drug for Cancer Patients. by David Haas
The leading UK charity, Macmillan Cancer Support, recently released a report echoing previous data linking the benefits of exercise to cancer patients. Early studies involved patients. Since then, additional studies have expanded to include patients undergoing treatment for just about every major form of cancer. A similar study by the UCLA Department of Integrative Biology and Physiology found that any type of physical activity may be beneficial for patients at any stage of cancer, from initial diagnosis through remission and recovery. The latest wonder drug for cancer patients may be exercise.
Recommendations on the exact amount of exercise necessary to be beneficial vary. One recommendation is 150 per week. However, most medical experts cited in the studies, note that any amount of regular exercise can help cancer patients be more receptive to treatment. A study involving prostate cancer patients found that the risk of dying dropped 30 percent among patients exercising on a regular basis. Breast cancer studies found a 40 percent reduction in recurrence. Studies show exercise can also reduce the risk of developing some forms of cancer, such as colon cancer. Exercise is also helpful in reducing some side effects of cancer treatment, including fatigue and depression. Exercise has a positive effect for patients undergoing treatment for rare forms of cancer as well, such as mesothelioma. Some patients experience a reduction in symptoms when mesothelioma treatment includes regular forms of exercise.
The exercise a patient gets doesn't have to be anything too strenuous. Even tasks such as working in the garden, going for a brisk walk, yoga or swimming can count as exercise and be equally beneficial. The Macmillan report found that more than half of health care professionals, including nurses, doctors and general practitioners, fail to inform patients of the potential benefits of some form of physical exercise during the treatment and recovery process. Those endorsing exercise for cancer patients point out that an exercise routine can be modified during different stages of treatment to fit a patient's needs. Some hospitals and medical facilities organize exercise groups specifically for patients. This provides added support along with the health benefits of regular physical activity in comfortable setting.
It is important to understand that exercise is not meant as a replacement for a patient's existing course of treatment, nor is it implied that exercise can cure any form of cancer. Patients should check with their doctor prior to starting any regular exercise routine. According to the American Cancer Society, more than 11 million Americans have some form of cancer. The American Cancer Society also advocates an active lifestyle to help reduce the risk of cancer and during treatment to lessen the physical strain during the recovery process.
David Haas is a cancer patient advocate and the awareness program advocate for the Mesothelioma Cancer Alliance. He researches and writes to help people going through cancer. You can find more of his writing at http://www.mesothelioma.com/blog/authors/david/
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/
Monday, January 9, 2012
Cold and the Frozen Tundra
In 2012, I welcomed in the New Year with a head cold and/or sinus infection. Normally I can beat these in a day or so by basically going to bed and sleeping until I'm better (I hate walking around dripping.) But this time it hung on for nearly a week. No, I didn't stay in bed after the first day or so - it wasn't working so I gave up. I'm fine now and back to my normal routine but this brings to mind something I've been thinking about.
At my last checkup I was talking to my doctor about the problems I've had with my kidney function and with this anemia. I asked him if loosing an organ like the bladder - even replacing it with something that functions the same - doesn't make the rest of the body more prone to problems. He answered; "Yes, definitely." I asked this because I don't like things that don't work properly - including my body. I have always come away from physicals with an absolutely clean bill of health (even my draft physical where I might have welcomed something less). I am now 62 and I don't take any pills and I never have. Is this pure luck? Maybe, but ten years ago my doctor told me my blood pressure was too high and I'd have to start taking pills. I immediately changed my life style. I changed how and what I ate (and drank) and I started riding bike to work every day. In the first month I lost 30 pounds (and I've kept it off). My next check up was normal once again and I've heard no more threats about pills from my doctor.
So at this latest physical, my doctor went on to say that I should continue to do as much as I can to keep healthy and to stay physically fit. This is important to everyone but it is critical to someone like me who has had cancer treatment (and this sort of surgery).
Since my surgery I have learned that my Neo-Bladder is very good at performing the main function of my original bladder (storage and delivery of urine). But it doesn't have all the bells and whistles of the original. How can it? Who knows for sure what all it did to contribute to the overall functioning of the body as a system. One example I've learned about are the one-way valves in the bladder where the tubes from the kidneys connected. These prevented the back flow from the bladder to the kidneys as the bladder filled and pressure increased. The kidneys apparently don't 'like' this back-flow and it can interfere with their function of removing waste from the blood. This puts more stress on the kidneys and who-knows-what other systems in the body. So it's important for me to think about my kidneys when I decide what to eat and drink. Like drinking at least 8 glasses of water a day. And maybe not waiting so long between trips to the bathroom although this is hard because there's really no sensation of fullness, in the neo-bladder, until it gets really full (and starts pressing on things around it ??)
I think of this body as being like a football team (timely being a Packers fan). The team is made up of all it's individual players. Each player must be designed for their particular function in the system (physique, talent, training, and experience). To succeed as a team, each player must contribute this function to the whole - hold up their end of the load. Each must also contribute things that are called intangibles like spirit, leadership, esprit d corps, drive, determination, focus, etc. Each player must be in top physical condition in order to endure the demands of the game. This becomes even more important when one player goes down with injury - or otherwise leaves the team. The substitute will usually be somewhat less capable and all the other players must work a little harder to compensate. (In my case a piece of intestine was pulled out of the offensive line to replace an injured wide receiver.) Hopefully they will all be strong enough, and the playing conditions will not be too grueling (Packers have home field advantage throughout the playoffs), and the opponent not too overpowering for the modified team to prevail and win this, and any future contest.
So I'm trying to ride my bike at least three times a week. I ride to where I used to work before retirement (~ 8 miles round trip) where I still have an office. I hope to take up cross country skiing when and if it finally snows in southern Wisconsin and I can no longer ride. I continue to umpire over 100 games a summer (chasing kids around a ball diamond). And I spend as much time as I can in our woods - trimming trees, planting, thinning, and just walking around looking at the trees, plants, and animals that live there. I hope this will keep all my players 'in the game'.
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'.
Friday, December 23, 2011
Haunted House
I'd finished hanging bed sheets over the windows. I had radios blasting music both upstairs and down. I had all the lights in the house turned on and all the doors and windows locked tight. The car keys were carefully placed to aid in a hasty exit but it was so dark outside I doubt I'd even attempt to make it to the car. I was ready for my first night alone in the old farm house. And, coincidentally, it was Halloween night. I kept thinking; "I hope no kids show up because I don't have any candy." Obviously this was the least of my worries.
I spread my sleeping bag on the old sofa that the former residents had left behind for me to use. I warmed a cup of hot chocolate in the microwave - also left by former residents - and settled in for the night.
After reading a couple magazines and finishing my cocoa, I turned off MOST of the lights; careful not to look around too much - if there were things moving around in the dark I didn't want to see them. I turned the radios down. I didn't turn it off because if there were things moving around I didn't want to hear them either. I removed my shoes and climbed into the sleeping bag fully clothed (again in case of a hasty exit). I had some extra blankets that I pulled up over my head (just like I'd done so many years ago, as a child growing up in this same house). And soon I was asleep.
I woke a couple times in the night to go to the bathroom. As I walked through the house, I kept focused on my destination, careful not to look around, and each time I climbed back into 'bed' I neglected to pull up as many of the extra blankets. It was hot under there and comfort was more important than my fear of the dark - another thing I remember from my childhood.
I woke just before the first light of dawn (according to my watch because it was still pitch dark outside). I put on my shoes, made a cup of instant coffee and waited for the new day.
As light started to show in the east I took the sheets down from the windows brewed another cup of coffee, and found a good seat to watch the sunrise over the lake. What a show that was. I've never noticed it before but when the sun clears the cloud bank on the horizon all the clouds in the sky get pure white tops over their grey bottoms. Anyway, I'd survived my first night in the house and was richly rewarded for my efforts with this beautiful show.
Maybe living in the country wouldn't be so bad. I didn't realize it right away but I was beginning to soften to the idea. I've lived in the city for over 40 years where it's never dark at night; it's never this quiet; and you are always surrounded by people. Almost all of them could care less who you are or what you do but you can never know for sure - so you're always on your guard. You always know they're out there. As I looked out on the yard, and across the surrounding farm land, the only 'living' thing I could see was a red squirrel. Not very dangerous but worthy of my attention just the same. So I brewed another cup and watched him scurry around the yard and up into the tree tops where he hoped from tree to tree and then down again and off somewhere beyond my view.
After breakfast, I began the days' (months') work of painting walls, fixing outlets, replacing fixtures, repairing leaky pipes. Over the past fifteen years - since my parents moved out - we've rented out this house. Our renters have typically been excellent boarders (all but the first) and they have taken very good care of the house. In most cases they have left it in much better condition than they found it. (yes, we've been very lucky.) Even so, there have been many issues that have needed attention (that aren't worth hiring someone to fix but still build up over time in an old house) and as old renters are usually moving out the same weekend the new renters are moving in, it's hard for me to sneak in to fix these things. I don't feel comfortable entering someone's house (even a tenant's) to fuss about fixing things. And things like painting the walls, replacing fixtures, and adding outlets, go a long way towards making the place presentable to potential renters - especially if I'm going to raise the rent.
So this time I have not advertized the house immediately after the renters moved out so that I can spend some time living in the house (camping would be a better word since it's pretty much empty). I can now work on these projects at my leisure and without interruption. Tackling these projects in an old house always seems to evolve into broader issues and it's nice to have the time to follow wherever these problems lead. I have also discovered that if you live in the house it will quickly 'tell' you about other problems that may be too minor for renters to bother telling you but would be nice to fix anyway. Plus I wanted to try out 'living' on the farm again. It's been over 40 years since I virtually ran screaming away from this farm; it's tedium; it's isolation (remember Luke Skywalker as a boy on Tantuine?) Now, I want to move back? After a lifetime (in many respects) of living far away, I wanted to spend time here to see how much had really changed. Or how much would still have to change before I was willing to move back.
So, I spent the first part of this day gathering my tools and supplies from the truck and from the shed where I base my operations during my visits to the farm when the house is rented. Among these were two big boom boxes which could provide me with company (music and talk) while I worked alone in the house.
The next few days I worked with the radios blasting on all floors of the house. Every time I left the house I made sure to lock up - even when I was just going out in the woods. I always locked the car at night - by habit - and one day I was getting ready for the night and had to retrieve one more thing from the car. I flipped the lock and closed the door, realizing too late the keys were still in the ignition (why did I do that?). I didn't have to go anywhere so I just left them for the night. I'd deal with this tomorrow. But it didn't help my piece of mind, that night, knowing my escape vehicle was unavailable.
The next day I found someone to help me open the car. They actually kidded me for; ".. locking this old thing." The rest of the week passed pretty much the same (except for locking the car) and I drove 5 hours back to the city. I was reluctant to leave the house empty but my neighbors had agreed to 'keep an eye on it'.
( to be continued)
I spread my sleeping bag on the old sofa that the former residents had left behind for me to use. I warmed a cup of hot chocolate in the microwave - also left by former residents - and settled in for the night.
After reading a couple magazines and finishing my cocoa, I turned off MOST of the lights; careful not to look around too much - if there were things moving around in the dark I didn't want to see them. I turned the radios down. I didn't turn it off because if there were things moving around I didn't want to hear them either. I removed my shoes and climbed into the sleeping bag fully clothed (again in case of a hasty exit). I had some extra blankets that I pulled up over my head (just like I'd done so many years ago, as a child growing up in this same house). And soon I was asleep.
I woke a couple times in the night to go to the bathroom. As I walked through the house, I kept focused on my destination, careful not to look around, and each time I climbed back into 'bed' I neglected to pull up as many of the extra blankets. It was hot under there and comfort was more important than my fear of the dark - another thing I remember from my childhood.
 |
| Sunrise |
As light started to show in the east I took the sheets down from the windows brewed another cup of coffee, and found a good seat to watch the sunrise over the lake. What a show that was. I've never noticed it before but when the sun clears the cloud bank on the horizon all the clouds in the sky get pure white tops over their grey bottoms. Anyway, I'd survived my first night in the house and was richly rewarded for my efforts with this beautiful show.
Maybe living in the country wouldn't be so bad. I didn't realize it right away but I was beginning to soften to the idea. I've lived in the city for over 40 years where it's never dark at night; it's never this quiet; and you are always surrounded by people. Almost all of them could care less who you are or what you do but you can never know for sure - so you're always on your guard. You always know they're out there. As I looked out on the yard, and across the surrounding farm land, the only 'living' thing I could see was a red squirrel. Not very dangerous but worthy of my attention just the same. So I brewed another cup and watched him scurry around the yard and up into the tree tops where he hoped from tree to tree and then down again and off somewhere beyond my view.
After breakfast, I began the days' (months') work of painting walls, fixing outlets, replacing fixtures, repairing leaky pipes. Over the past fifteen years - since my parents moved out - we've rented out this house. Our renters have typically been excellent boarders (all but the first) and they have taken very good care of the house. In most cases they have left it in much better condition than they found it. (yes, we've been very lucky.) Even so, there have been many issues that have needed attention (that aren't worth hiring someone to fix but still build up over time in an old house) and as old renters are usually moving out the same weekend the new renters are moving in, it's hard for me to sneak in to fix these things. I don't feel comfortable entering someone's house (even a tenant's) to fuss about fixing things. And things like painting the walls, replacing fixtures, and adding outlets, go a long way towards making the place presentable to potential renters - especially if I'm going to raise the rent.
So this time I have not advertized the house immediately after the renters moved out so that I can spend some time living in the house (camping would be a better word since it's pretty much empty). I can now work on these projects at my leisure and without interruption. Tackling these projects in an old house always seems to evolve into broader issues and it's nice to have the time to follow wherever these problems lead. I have also discovered that if you live in the house it will quickly 'tell' you about other problems that may be too minor for renters to bother telling you but would be nice to fix anyway. Plus I wanted to try out 'living' on the farm again. It's been over 40 years since I virtually ran screaming away from this farm; it's tedium; it's isolation (remember Luke Skywalker as a boy on Tantuine?) Now, I want to move back? After a lifetime (in many respects) of living far away, I wanted to spend time here to see how much had really changed. Or how much would still have to change before I was willing to move back.
So, I spent the first part of this day gathering my tools and supplies from the truck and from the shed where I base my operations during my visits to the farm when the house is rented. Among these were two big boom boxes which could provide me with company (music and talk) while I worked alone in the house.
The next few days I worked with the radios blasting on all floors of the house. Every time I left the house I made sure to lock up - even when I was just going out in the woods. I always locked the car at night - by habit - and one day I was getting ready for the night and had to retrieve one more thing from the car. I flipped the lock and closed the door, realizing too late the keys were still in the ignition (why did I do that?). I didn't have to go anywhere so I just left them for the night. I'd deal with this tomorrow. But it didn't help my piece of mind, that night, knowing my escape vehicle was unavailable.
The next day I found someone to help me open the car. They actually kidded me for; ".. locking this old thing." The rest of the week passed pretty much the same (except for locking the car) and I drove 5 hours back to the city. I was reluctant to leave the house empty but my neighbors had agreed to 'keep an eye on it'.
I looked into buying a home security system but the only ones I could find also required purchasing installation along with a 'service'. I couldn't see paying someone to install such a simple thing OR paying someone to answer the phone when the system called to report a problem. But this is another story.A few days passed before I made the return trip to the haunted house. In this brief time away, I discovered that, in my absence, much had changed.
( to be continued)
Sunday, December 11, 2011
The Wave
When faced with new difficulties we have to try resolve them in a way that will fit into the overall model of reality that we hold in our minds; the model which we use to direct our lives. Often this involves making some hypotheses about the true nature of the problem, inventing some tests to prove or disprove, and then developing a solution that we can live with. One way to analyze the unknown is to try to relate it to something familiar. Like the wave at a football game.
The Difficulty:
Nighttime is not my friend. Sleep is not something I look forward to because it is always a venture into the unknown; into the new difficulties in my life; into one of the side effects of bladder surgery. Because I never know, when I go to sleep, whether I will wake up dry or wake up soaked or something in between. For many months after surgery I was plagued with night sweats and I would go through many changes of tee shirts (and blankets, sheets, and pillows) nearly every night. Those eventually stopped and I could finally concentrate on the problem of controlling my new bladder while sleeping. Or at least tuning in to the signals and waking up in time. There seems to be a couple different things going on here:
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.
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.
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.
My surgeon took a lot of pride in the fact that he performs nerve sparing surgery. Most of what he talks about in this regard is sparing the nerves that passed next to the prostate and on down to the penis to control the erection process (he's a young guy and still believes that sex is important). I have come to believe that he was also able to spare the nerves that feed the piece of intestine that he moved and reformed into the neo-bladder. I think you'd have to.
The surgeon has told me that the new bladder doesn't have muscles like the original bladder that contracted and pushed the urine out when I took a pee. Based on my experiences with this neo-bladder I have come to the conclusion that there are, in fact, muscles in the neo-bladder walls that are capable of contracting and emptying the bladder very effectively. The problem is that these are not voluntary muscles, they are not very strong, and I have no control over when they do their work (more or less).
Evidence the fact that I can sit down to pee and work as hard as I can to empty the bladder - all the tricks I have been taught and have learned. When I think I'm finished there are times when, in the process of pushing, etc. I discover that I also need to take a dump. NOW - once I initiate this process and almost immediately, I get a strong flow of urine. So, I've learned that if I really want to clear out the bladder all I need do is take a dump. What's going on here? It could be that in the process of moving this bowel through the lower colon (which passes next to the bladder) I am squeezing the 'bag' - so to speak - in a way that I cannot do either with my diaphragm muscles or through manual external massage.
But an alternative hypothesis has come to mind based on this and other evidence. I believe these muscles are used in the intestine to move digestive materials through the intestine using peristaltic contractions. The Neo-bladder has retained these muscles and the nerves that control them and the net effect is similar to the 'wave' that the fans do at a football game.
Cheerleaders run - in front of one section and then the next - waiving their hands up in the air to get the fans in each section in turn, to stand and cheer and then sit back down while the next section stands and cheers. And so on, as the wave moves around the stadium.
My surgeon removed one of these sections and made it the neo-bladder and in the process kept the nerves intact so the relocated section still 'thinks' its in it's original place in the 'stadium'. So as the peristaltic contraction moves down the intestines and that 'cheerleader' gets to where that relocated section used to be, the neo-bladder contracts (stands up and cheers) as if it were still in it's original place in the intestinal system.
And so (the test)?
I can imagine that when we are sleeping our body functions shut down along with our minds ( a concept I became very familiar with after my surgery). When we are fully rested our body begins to wake up and the functions fire up again so the body is prepared for whatever the mind decides to ask it to do when it gets around to waking up. So when my intestines wake up, they begin moving things around again and since my neo-bladder still thinks it's intestine, it takes it's turn when the wave passes.
The solution here seems to be to tune my mind to wake up when my body wakes up. This involves both sensing the fact and then (the hard part) acting on it. When my body wakes up it's time for me to get out of bed because if I'm up and moving then I can easily control the wave when it hits. Otherwise I will snooze (like I've done all these years) and then it becomes too late.
This seems to work - as long as I don't mess with things. As long as I don't stay up and get over tired. As long as I don't party too much or eat too much before bedtime. As long as I don't drink anything when I wake up at night (don't know for sure if this makes a difference) but I drink a lot of water in the daytime to make up for it - gotta keep the new system well flushed out. And as long as if I wake up and it's close to morning, I get up.
Friday, September 9, 2011
Looking back - sort of.
Anniversaries for events of the past year and a half are coming and going. Some are carefully marked and some pass relatively unheeded. Facebook now has a feature that reminds you what you were posting a year ago (how long do they keep that stuff?) A year ago today I was talking about chemo. That's an anniversary that I don't care to think about. I guess I really am no longer too interested in looking back. That's one thing that has been changed by this experience. Let's create new life events and worry less about the anniversaries of the old. After all, the future is much more precious than the past because it has one thing the past cannot have - it has promise. Having said that....
Looking 'Back':
I have made a new friend. John was in St. Mary's Hospital the same time as me - and recovering from the same surgery. It turns out that he and I had had pretty much the same experience over the prevous year and a half (diagnosis, treatment options, chemo, surgery, etc.) What a coincidence.
We were introduced in the hospital because we were 'unique' and perhaps we could help each other through our respective recoveries. It worked. We had this whole experience in common. Both of us - and our wives and our families - had been pretty much beaten down lately and none of us really knew what was in store. We had no reference upon which to base optimism (in the immediate sense), so we 'referenced' each other. The doctors and nurses were great and very supportive but they were limited to generalities. They'd say things like; "You can't go home until you pass gas." We understood that this was a milestone in our recovery but what did it really mean to someone who has had two feet of their intestine 'relocated'. And what about this new bladder - fabricated from that intestine - how the heck does that work? This is why we were unique and why we all, I think, felt a little lost.
Another reason was that we had been told - before the surgery - that we may need 3 - 5 days to recover enough to go home. It took me a week and John had already been there 2 weeks before me. How depressing was that. I had insisted that my wife stay with me - she slept on a cot next to my bed - because I was afraid. Would she have to sleep there for two more weeks?
Misery loves company and we were able to find humor in our shared experiences. My spirits were raised because I wasn't having the same complications that were keeping John down. I think John's spirits were raised because I was proof that you could 'really' recover from this and go home.
John and I have stayed in touch and have continued to compare notes during regular phone conversations. We are finding that one of the things we now share is the craftsmanship of our surgeon - impressive so far - but we have both had some minor problems. The connection of the ureter from the left kidney into the neo-bladder became plugged with scar tissue. Neither of us has had pain associated with this (an expected symptom of kidney problems according to our urologist/surgeon). Both of us have recovered from the nephrostomy experience and, hopefully, our left kidney's are recovering as well. We are awaiting our follow-up visit with another ultrasound scan and blood test results.
We compare notes and that still helps. These are not things learned during office calls or by browsing the internet. We are still unique in that even though this surgery is fairly common, relatively few share the particular craftsmanship that went into ours.
Looking 'Back':
I have made a new friend. John was in St. Mary's Hospital the same time as me - and recovering from the same surgery. It turns out that he and I had had pretty much the same experience over the prevous year and a half (diagnosis, treatment options, chemo, surgery, etc.) What a coincidence.
We were introduced in the hospital because we were 'unique' and perhaps we could help each other through our respective recoveries. It worked. We had this whole experience in common. Both of us - and our wives and our families - had been pretty much beaten down lately and none of us really knew what was in store. We had no reference upon which to base optimism (in the immediate sense), so we 'referenced' each other. The doctors and nurses were great and very supportive but they were limited to generalities. They'd say things like; "You can't go home until you pass gas." We understood that this was a milestone in our recovery but what did it really mean to someone who has had two feet of their intestine 'relocated'. And what about this new bladder - fabricated from that intestine - how the heck does that work? This is why we were unique and why we all, I think, felt a little lost.
Another reason was that we had been told - before the surgery - that we may need 3 - 5 days to recover enough to go home. It took me a week and John had already been there 2 weeks before me. How depressing was that. I had insisted that my wife stay with me - she slept on a cot next to my bed - because I was afraid. Would she have to sleep there for two more weeks?
Misery loves company and we were able to find humor in our shared experiences. My spirits were raised because I wasn't having the same complications that were keeping John down. I think John's spirits were raised because I was proof that you could 'really' recover from this and go home.
John and I have stayed in touch and have continued to compare notes during regular phone conversations. We are finding that one of the things we now share is the craftsmanship of our surgeon - impressive so far - but we have both had some minor problems. The connection of the ureter from the left kidney into the neo-bladder became plugged with scar tissue. Neither of us has had pain associated with this (an expected symptom of kidney problems according to our urologist/surgeon). Both of us have recovered from the nephrostomy experience and, hopefully, our left kidney's are recovering as well. We are awaiting our follow-up visit with another ultrasound scan and blood test results.
We compare notes and that still helps. These are not things learned during office calls or by browsing the internet. We are still unique in that even though this surgery is fairly common, relatively few share the particular craftsmanship that went into ours.
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