I made it back. We live in an incredible place here in central Oregon. In the spring, summer and early fall there are so many options available to those who like the outdoor life. And, I love being outside. I actually don't need to be doing anything even remotely important. I can read a book, drink a Dr. Pepper while eating Frito's and watching the darting and daring hummingbirds who drink from our many feeding stations. And I can go hiking or kayaking or work on the many projects produced by a house, greenhouse, firewood pile, four cats and "stuff".
For example, I mow our small grass lawn, then go get the weed wacker, which needs gas, and a new string, and it won't start right away so I putter with that, finally get it started, finish the lawn and edge and around the tree with the weed wacker, then clean up the grass clippings and before you know it, my tiny lawn has taken 4 hours to finish.
At any rate, we also did a lot of hiking and kayaking this year, so time just flitted away and before I knew it, the summer had been anticipated, had come and is now in the process of going. We got a lot of "major" projects done this year as well as the fun outdoor stuff, we just got wrapped up in life.
Which leads me to the point of this post, and yes, there was a point to this circuitious process of telling you what I did this summer and why I never seemed to come back to my blog and post new entries. I had promised myself that I would be a good poster on the blog, but, as I said earlier, life just seemed to get in the way. And, perhaps I just didn't have much to add. I did a lot of thinking. Or sitting and staring at things, claiming it was thinking.
This blog, and the reason for starting it was to share information about surviving after a major medical issue. A place where I (and you if you want) can exchange my (our) views and, hopefully receive feedback or comments. Well, I sure am and do exchange my views but I just seem to be getting little feedback. However, all good things come to those who wait.
There were other things taking place as well, specifically more time spent with my friend and fellow coach, Shannon. Shannon is local, that is one of us who lives and loves Bend, a coach, a social worker and, a survivor. However Shannon is not a cancer survivor, she is a transplant survivor. Which, in the discussions Shannon and I have had over coffee, lunch and in meetings, has given me a whole new outlook on the issue of who, and what a survivor may be.
There are so damn many cancer survivors (up to about 11 million I believe) and it seems that we have taken over the concept of survival, or thriving if you perfer. Yet as the summer progressed and I spent even more time with Shannon, I came to the realization that there is a much broader base of survivors than those of us with cancer who seem to have taken over that term. There are the whole range of transplant survivors, and with Shannon's help, once I went beyond cancer, I realized that there are a whole range of people who could fall into this "survivor" description, each of us with a number of issues which are far more similar than different, all of which can be discussed in this blog. As a matter of fact, as Shannon and I went through my Survivor's Workbook, we realized that there are even more similarities than differences between the various survivor groups once you begin to think about it. Over the next few months we will try to spend some quality time with the general issue of surviving, and thriving with little attention paid to any particular diagnostic grouping.
Sometime in the next few days, you are going to meet Shannon and get to know her and her story. I think you'll enjoy her attitude on life and living and her approach to dealing not only with our survivor group but with her very active and far ranging life. Shannon is a unique and very cool lady, with great opinions and good insights.
So, expect more from us over these next few months as we begin to look toward an even more exciting future for all of us, no matter our situation, who are surviving, and thriving and, on occassion, having a bit of chocolate.
Monday, September 22, 2008
Wednesday, May 21, 2008
Vacation time
My wife and I just returned from one of our annual vacations, (we usually have at least two "annual" vacations) and we had a great time. Since we live in the high desert of Oregon, at about 4000 feet, we deal with a situation of rather long, if not awful, winters, cold nights and the chance that it will snow on almost any date. I once heard that historically there was no day during the year that our community had not had a temperature below freezing.
So, when we pick our Spring or Fall vacation locations we often go for the warm, sunny and enjoyable places.
This year we first selected Zion National Park, however we changed that when we checked out the temperatures in Zion and discovered that we would be leaving one cold spot, our hometown, for yet another cold spot. How can you call that a vacation?
So, our selection became somewhat easy, we would return to our old friend, Death Valley.
The "season" in Death Valley runs from October to mid April, which is when the temps are bearable and when the hordes of campers, golfers, bikers and others beat a path to the stark confines of this awesome place.
We arrived there in mid May as temperatures were hovering in the 100's, and the sun filled the canyons and salt flats with heat. I think the hotest day of the two weeks was about 117 however we heard it was also reported at 120 and 111. All three of those temps would fry an egg on the hood of your car so it doesnt matter much at that level. Death Valley has about 2 inches of rain a year so we were lucky to be there during one of those rainy days. The clouds came in, dark gray, obvious rain clouds and while we were walking, it actually began to rain. Glory, glory! I felt 4 drops and I believe Andrea felt 3. Then the rain was done for that month.
For those who don't do the summer heat thing, we also heard that when it is 115 degrees air temp, the ground temp hovers around 180 or so. I have no idea what this means, yet as hikers we could feel the heat through our hiking boots, and when we sat on rocks to eat our lunch or take a drink.
So, there were two things that happened on this trip that I wanted to share with anyone who reads this blog;
1. We went out to dinner one night at the Furnace Creek Ranch, about a half mile from the campground (we take our trailer with us on most vacations so we eat our home cooked meals in the trailer but we also treat ourselves after long, hard hikes by buying the effort and energy of others to serve us) and met an incredible woman who was acting as our server at the restaurant located within the Furnace Creek Ranch and resort enclave.
With a big smile and a formidible presence for someone about five foot nothing, Sharon came to our table, looked at me for a long time and said something like "sorry to stare at you but I feel this.... something, maybe a connection to you. I don't know why but I do. Oh well, would you like something to drink before ordering?" I gave her a big smile.
We did, then we ordered, ate, talked and at the end of the meal engaged Sharon in more conversation. It turned out that a number of years ago Sharon decided to hike across the desert to a place called Stovepipe Spring, a trip of about 14 miles, too far to make it in one day which was fine with her since she wanted to get over a fear of being out in the desert overnight. Well she succeeded at overcoming that fear and continued to hike each year, inviting others to join her. The annual May hike from Furnace Creek Ranch to Stovepipe Wells which became an annual tradition for 8 years, until the year she was too ill to walk since she was fighting cancer and her treatments made it impossible. Well, friends and co-workers took up the cause and made the hike for her.
In 2006, Sharon's hike became the Death Valley walk for life when Sharon became cancer free and welcomed 19 others to hike with her.
Check out the web site for this group at; www.deathvalleywalkforlife.org
I guess we have figured out the connection Sharon felt between us and I know that our fortuitous encounter will stay with me for many years. I may even gather the courage to go back and give the walk a shot, but like Sharon, I am not a big fan of the night in the desert since all those things I can watch for during the day, snakes, scorpions and other stuff, can and do enjoy coming out to check out life durning the night. And, I must admit, I am not a big fan of camping out in a sleeping bag and tent, or cooking my food over an open fire. We did that for a number of years and I finally decided I'd paid my dues and wanted the comfort of a trailer.
However, what I really need to admit is that I could deal with all those things but my resolve begins to fade when I realize that I would also have to carry all that stuff for the whole hike. For example, the recommendation when hiking the desert is to take 2 gallons of water per day. For a two day trip that means 4 gallons if you don't take a shower. Water is about 8 pounds per gallon so the water for a two day trip would be 32 pounds. The option is that you cut back on water and die which makes it the least attractive option I can think of. Talk about being a wimp.
Okay, way back toward the beginning of this entry I said there were two things I wanted to share in this blog, here is the second one.
2. This is going to get personal, but then its in my blog which is about the most personal kind of thing we can do, if we do it right. So, onward.
My cancer was in the prostate and was treated with surgery. I don't know if some of you know this but prostate surgery takes place in the same area where urine travels out of the body. As a result the tubes which transmit urine are, often, I understand, impacted by the surgery. I also understand from others with this diagnosis that radiation can have an impact on our ability to urinate. At any rate, after surgery I had a catheter, and a bag and all that stuff hanging on my leg and then my job was to learn how to control the damaged muscles and to learn how to contract muscles to take the role of the now missing spincter to cut off the flow of urine. Most of us in this learning role wear some kind of diapers after the catheter comes out and as we learn how to control the muscles.
I got pretty good at this.
Now, here is how this second section connects with the earlier section about our vacation in Death Valley; I deal with what I (and probably others since I can't imagine I came up with this name on my own) call, "stress incontinence". Stress incontinence is basically when those trained muscles just can't deal with it and ..... we leak.
For me this happens, often, when we are out hiking and going uphill. I work hard to go uphill, probably because I have no butt to speak of and I am tall and wirey (some call me skinny actually) and therefore the muscles that propel or force us up are working overtime in my body. By working those muscles so hard I sometimes lose control of those other muscles, the ones that act as a spincter, and, you got it, dribble.
Now this is generally not a problem since hiking is a solitary activity and Andrea understands, and because we do a lot of our hiking in the mountains around our area where I can walk off the trail and take care of my needs. In Death Valley there are no trees to hide me from the giggles, pointing and rude comments as I frantically look for a place to go in a canyon with sheer, 200 foot tall walls and where the biggest tree is often a foot and a half tall, and the rocks are less than that.
For the most part, I deal with this, and like many of us my lack of total control is not a significant problem. I know women friends who tell me this condition is often part of becoming a mother, and they deal with it.
So, what does this mean? Not much actually but this is just one more of those things that come along for the ride when we have a significant medical issue. I know my situation is not a big deal in the scheme of things about life, yet taken in the context of the other aspects of being a survivor of any medical condition, we have all found ourselves in a place where our diagnosis, while scary enough on its own, is but part of the situation, and we discover the other impacts of our situation as we live beyond our diagnosis and treatment and recovery. However living and learning and growing into all our challenges sure as hell beats the alternative.
Perhaps that is another of the reasons we call ourselves, survivors.
So, when we pick our Spring or Fall vacation locations we often go for the warm, sunny and enjoyable places.
This year we first selected Zion National Park, however we changed that when we checked out the temperatures in Zion and discovered that we would be leaving one cold spot, our hometown, for yet another cold spot. How can you call that a vacation?
So, our selection became somewhat easy, we would return to our old friend, Death Valley.
The "season" in Death Valley runs from October to mid April, which is when the temps are bearable and when the hordes of campers, golfers, bikers and others beat a path to the stark confines of this awesome place.
We arrived there in mid May as temperatures were hovering in the 100's, and the sun filled the canyons and salt flats with heat. I think the hotest day of the two weeks was about 117 however we heard it was also reported at 120 and 111. All three of those temps would fry an egg on the hood of your car so it doesnt matter much at that level. Death Valley has about 2 inches of rain a year so we were lucky to be there during one of those rainy days. The clouds came in, dark gray, obvious rain clouds and while we were walking, it actually began to rain. Glory, glory! I felt 4 drops and I believe Andrea felt 3. Then the rain was done for that month.
For those who don't do the summer heat thing, we also heard that when it is 115 degrees air temp, the ground temp hovers around 180 or so. I have no idea what this means, yet as hikers we could feel the heat through our hiking boots, and when we sat on rocks to eat our lunch or take a drink.
So, there were two things that happened on this trip that I wanted to share with anyone who reads this blog;
1. We went out to dinner one night at the Furnace Creek Ranch, about a half mile from the campground (we take our trailer with us on most vacations so we eat our home cooked meals in the trailer but we also treat ourselves after long, hard hikes by buying the effort and energy of others to serve us) and met an incredible woman who was acting as our server at the restaurant located within the Furnace Creek Ranch and resort enclave.
With a big smile and a formidible presence for someone about five foot nothing, Sharon came to our table, looked at me for a long time and said something like "sorry to stare at you but I feel this.... something, maybe a connection to you. I don't know why but I do. Oh well, would you like something to drink before ordering?" I gave her a big smile.
We did, then we ordered, ate, talked and at the end of the meal engaged Sharon in more conversation. It turned out that a number of years ago Sharon decided to hike across the desert to a place called Stovepipe Spring, a trip of about 14 miles, too far to make it in one day which was fine with her since she wanted to get over a fear of being out in the desert overnight. Well she succeeded at overcoming that fear and continued to hike each year, inviting others to join her. The annual May hike from Furnace Creek Ranch to Stovepipe Wells which became an annual tradition for 8 years, until the year she was too ill to walk since she was fighting cancer and her treatments made it impossible. Well, friends and co-workers took up the cause and made the hike for her.
In 2006, Sharon's hike became the Death Valley walk for life when Sharon became cancer free and welcomed 19 others to hike with her.
Check out the web site for this group at; www.deathvalleywalkforlife.org
I guess we have figured out the connection Sharon felt between us and I know that our fortuitous encounter will stay with me for many years. I may even gather the courage to go back and give the walk a shot, but like Sharon, I am not a big fan of the night in the desert since all those things I can watch for during the day, snakes, scorpions and other stuff, can and do enjoy coming out to check out life durning the night. And, I must admit, I am not a big fan of camping out in a sleeping bag and tent, or cooking my food over an open fire. We did that for a number of years and I finally decided I'd paid my dues and wanted the comfort of a trailer.
However, what I really need to admit is that I could deal with all those things but my resolve begins to fade when I realize that I would also have to carry all that stuff for the whole hike. For example, the recommendation when hiking the desert is to take 2 gallons of water per day. For a two day trip that means 4 gallons if you don't take a shower. Water is about 8 pounds per gallon so the water for a two day trip would be 32 pounds. The option is that you cut back on water and die which makes it the least attractive option I can think of. Talk about being a wimp.
Okay, way back toward the beginning of this entry I said there were two things I wanted to share in this blog, here is the second one.
2. This is going to get personal, but then its in my blog which is about the most personal kind of thing we can do, if we do it right. So, onward.
My cancer was in the prostate and was treated with surgery. I don't know if some of you know this but prostate surgery takes place in the same area where urine travels out of the body. As a result the tubes which transmit urine are, often, I understand, impacted by the surgery. I also understand from others with this diagnosis that radiation can have an impact on our ability to urinate. At any rate, after surgery I had a catheter, and a bag and all that stuff hanging on my leg and then my job was to learn how to control the damaged muscles and to learn how to contract muscles to take the role of the now missing spincter to cut off the flow of urine. Most of us in this learning role wear some kind of diapers after the catheter comes out and as we learn how to control the muscles.
I got pretty good at this.
Now, here is how this second section connects with the earlier section about our vacation in Death Valley; I deal with what I (and probably others since I can't imagine I came up with this name on my own) call, "stress incontinence". Stress incontinence is basically when those trained muscles just can't deal with it and ..... we leak.
For me this happens, often, when we are out hiking and going uphill. I work hard to go uphill, probably because I have no butt to speak of and I am tall and wirey (some call me skinny actually) and therefore the muscles that propel or force us up are working overtime in my body. By working those muscles so hard I sometimes lose control of those other muscles, the ones that act as a spincter, and, you got it, dribble.
Now this is generally not a problem since hiking is a solitary activity and Andrea understands, and because we do a lot of our hiking in the mountains around our area where I can walk off the trail and take care of my needs. In Death Valley there are no trees to hide me from the giggles, pointing and rude comments as I frantically look for a place to go in a canyon with sheer, 200 foot tall walls and where the biggest tree is often a foot and a half tall, and the rocks are less than that.
For the most part, I deal with this, and like many of us my lack of total control is not a significant problem. I know women friends who tell me this condition is often part of becoming a mother, and they deal with it.
So, what does this mean? Not much actually but this is just one more of those things that come along for the ride when we have a significant medical issue. I know my situation is not a big deal in the scheme of things about life, yet taken in the context of the other aspects of being a survivor of any medical condition, we have all found ourselves in a place where our diagnosis, while scary enough on its own, is but part of the situation, and we discover the other impacts of our situation as we live beyond our diagnosis and treatment and recovery. However living and learning and growing into all our challenges sure as hell beats the alternative.
Perhaps that is another of the reasons we call ourselves, survivors.
Hang in there, Ted
I can't imagine the feeling I would have if after my cancer diagnosis several years ago the headlines, news reports and CNN blazed the reality of my condition. On the other hand, I recognize that my name recognition is just a bit less than Senator Kennedy, therefore my medical condition would probably warrant just a bit less coverage. Come to think of it, I got no recognition in our local paper, news reports or weekly alternative paper. Which was pretty nice, I must say. While I do have a history of accomplishments, two books, high profile positions in the nonprofit world, interviews, articles, and a bit of controversy connected to my work, I have done little of late that would prompt a rush of news types to my door, phone, email or a gaggle of honking press lurking at the local coffee shop to ask me how I feel after being diagnosed.
Thank God!
Senator Kennedy has been in the news for at least 40 years as a result of his political position, his name, his stand on issues and his ability to impact so many of us I guess that makes him fair game. Perhaps the price we pay for that kind of notariety is the price he, and his family, are paying now. I cannot imagine the anguish connected with the questions he and his family are facing from the insatiable horde of reporters.
Almost anyone reading this blog has some connection with cancer, either your own or a family member so you have some idea of the impact of that diagnosis on your mental condition, emotions, feelings, and, for many of us, our entire life. The internal questions, feelings, fears and dread not only of the treatment we were facing, but of the prognosis of our condition were front and center and personally these occupied a great deal of my time and energy.
My diagnosis left me with an incredible array of concerns to deal with and in the great scheme of things, I not only had one of the less invasive cancers, I also had several treatment options, though it was suggested that I did only have one good option. I choose that option and, through the luck of the draw, it was not totally successful. I then discovered that I had yet another option, entrance into a clinical trial, which I took. I managed to get selected for the "right" arm of the trial and now, almost 4 years later am still cancer free, a survivor.
I decided to write this entry after reading this mornings paper where a physician, Dr. John Adler of Stanford University gave the opinion that Senator Kennedy was facing an incredible challenge, and, the way I read the article, a short and debilitating progression of negative and fatal side effects of vital functions like breathing, eating and swallowing, and though not specifically said, it was implied that he faced certain death from his cancer.
Perhaps I am being overly negative toward the news reports and reporters who cover this kind of thing since that is their function, or their job, yet I also remember how long it took me to look at my diagnosis in any kind of positive way and I wonder, how would I have dealt with reading about my pending doom in an article, or watching it on the tube. I guess I know myself well enough to know that I would have been totally freaked.
So, I guess my main question here is where and when do the positive comments begin?
Positive comments? you shout!!!!! There ain't no positive comments about this situation.
There could be.
I know the prognosis for Senator Kennedy is not great so I am not totally engaged in denial about his future or the impact of his cancer. Yet I am also aware that there are over 11 million people in our country who call themselves survivors of cancer. I have a friend who, for more than 20 years has survived not one, but two terminal diagnosis of cancer. I belong to a group of hundreds of long term survivors who have beat the odds of this disease so don't tell me it doesn't happen.
I wonder where those voices are? Have any of us had the nerve to suggest that something could change the course of this diagnosis and prognosis and that Senator Kennedy could survive this fight?
If so, I have yet to read or hear them.
If there is one thing I have learned since being diagnosed with my own cancer, and connecting with hundreds of other survivors, it is that we always have a chance to make it through this disease, treatment, recovery and come out the other side as a survivor.
For some of us that chance is slim, for others it is almost non-existant, yet for any of us it is possible. That chance, slim or almost non-existant, is what we, as survivors, grab and ride as we move through the various stages of our treatment and recovery. And, with all due respect to the doctors, the service providers, the pundits, the reporters and the experts who believe the battle is over before it is over, JUST SHUT THE HELL UP!
Let Senator Kennedy fight this the way he wants to fight it, with the same kind of hope he has brought to politics and the people he represents. For over 40 years, Ted Kennedy has fought battles which none of us thought he could win, yet year after year, he has made an impact and won.
I can't imagine he would put anything less than his entire being, his entire ability to move forward, his formidible energy into beating this latest challenge.
Personally I'm going to continue to live with the belief that he will win this latest challenge and the hope that he will continue to be a pain in the butt to the members of the Senate. Why? Because the alternative is to give up and accept the view of the experts. Perhaps that is why I continue to call myself a survivor and why I believe that being a survivor is a matter of the attitude I have, the decisions I make, the approach to life I take, not the opinion of others.
So, come on Ted, don't read the papers, watch the news, or grant interviews. Just grab life, hang on and beat this thing. And, if you don't the battle alone would be worth it.
Beryl
Thank God!
Senator Kennedy has been in the news for at least 40 years as a result of his political position, his name, his stand on issues and his ability to impact so many of us I guess that makes him fair game. Perhaps the price we pay for that kind of notariety is the price he, and his family, are paying now. I cannot imagine the anguish connected with the questions he and his family are facing from the insatiable horde of reporters.
Almost anyone reading this blog has some connection with cancer, either your own or a family member so you have some idea of the impact of that diagnosis on your mental condition, emotions, feelings, and, for many of us, our entire life. The internal questions, feelings, fears and dread not only of the treatment we were facing, but of the prognosis of our condition were front and center and personally these occupied a great deal of my time and energy.
My diagnosis left me with an incredible array of concerns to deal with and in the great scheme of things, I not only had one of the less invasive cancers, I also had several treatment options, though it was suggested that I did only have one good option. I choose that option and, through the luck of the draw, it was not totally successful. I then discovered that I had yet another option, entrance into a clinical trial, which I took. I managed to get selected for the "right" arm of the trial and now, almost 4 years later am still cancer free, a survivor.
I decided to write this entry after reading this mornings paper where a physician, Dr. John Adler of Stanford University gave the opinion that Senator Kennedy was facing an incredible challenge, and, the way I read the article, a short and debilitating progression of negative and fatal side effects of vital functions like breathing, eating and swallowing, and though not specifically said, it was implied that he faced certain death from his cancer.
Perhaps I am being overly negative toward the news reports and reporters who cover this kind of thing since that is their function, or their job, yet I also remember how long it took me to look at my diagnosis in any kind of positive way and I wonder, how would I have dealt with reading about my pending doom in an article, or watching it on the tube. I guess I know myself well enough to know that I would have been totally freaked.
So, I guess my main question here is where and when do the positive comments begin?
Positive comments? you shout!!!!! There ain't no positive comments about this situation.
There could be.
I know the prognosis for Senator Kennedy is not great so I am not totally engaged in denial about his future or the impact of his cancer. Yet I am also aware that there are over 11 million people in our country who call themselves survivors of cancer. I have a friend who, for more than 20 years has survived not one, but two terminal diagnosis of cancer. I belong to a group of hundreds of long term survivors who have beat the odds of this disease so don't tell me it doesn't happen.
I wonder where those voices are? Have any of us had the nerve to suggest that something could change the course of this diagnosis and prognosis and that Senator Kennedy could survive this fight?
If so, I have yet to read or hear them.
If there is one thing I have learned since being diagnosed with my own cancer, and connecting with hundreds of other survivors, it is that we always have a chance to make it through this disease, treatment, recovery and come out the other side as a survivor.
For some of us that chance is slim, for others it is almost non-existant, yet for any of us it is possible. That chance, slim or almost non-existant, is what we, as survivors, grab and ride as we move through the various stages of our treatment and recovery. And, with all due respect to the doctors, the service providers, the pundits, the reporters and the experts who believe the battle is over before it is over, JUST SHUT THE HELL UP!
Let Senator Kennedy fight this the way he wants to fight it, with the same kind of hope he has brought to politics and the people he represents. For over 40 years, Ted Kennedy has fought battles which none of us thought he could win, yet year after year, he has made an impact and won.
I can't imagine he would put anything less than his entire being, his entire ability to move forward, his formidible energy into beating this latest challenge.
Personally I'm going to continue to live with the belief that he will win this latest challenge and the hope that he will continue to be a pain in the butt to the members of the Senate. Why? Because the alternative is to give up and accept the view of the experts. Perhaps that is why I continue to call myself a survivor and why I believe that being a survivor is a matter of the attitude I have, the decisions I make, the approach to life I take, not the opinion of others.
So, come on Ted, don't read the papers, watch the news, or grant interviews. Just grab life, hang on and beat this thing. And, if you don't the battle alone would be worth it.
Beryl
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