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.
Cancer survivors know the impact of our diagnosis goes beyond our body. Outlook, attitude, and our future hopes are integral parts of full recovery. This blog will look at the many roads we can take to make the rest of our lives the best of our lives. We will have stories, ideas, exercises and questions for readers. We begin by asking you to consider your life as a survivor and entertain the question, "What is my dream?"
How I define myself
Survivors, Thrivers & Chocolate?
What kind of a blog name is that? Take a few minutes and read the article below, How I define myself to see where it came from.
Enjoy the story.
How I define myself.
Through most of my life I have defined myself with words. I was a kid, a grandkid, a teenager, a student, a ball player, a graduate. When I entered the world of work I assumed the title of my profession or, if it were grand enough, by my job title. Then I discovered new definitions and became a husband, father and eventually a grandfather. All these titles were earned.
And then, I became a person with cancer. A cancer patient! Because a great deal of my life was spent working in medical settings and with kids and adults with medical issues, my initial response to my role as patient was negative, I neither liked, nor wholly accepted the idea, fact or concept that I would spend the rest of my life as a patient.
So, what did the fact that my cancer was still present after surgery do to my belief, attitude and view of who I was? I was still a father, grandfather, husband, and professional but who was I in relationship to this disease which had and would to continue to pervade my life?
I must admit that “patient” and “cancer patient” irritated me. Clinical trial subject 203486 scared me even more. Yet to deny my cancer and the reality that I would be followed for the rest of my life by a medical team seemed silly and counterproductive to reality. So, on a warm, spring day I finally asked myself what I wanted to be for the rest of my life.
My answer was pretty quick. I not only wanted, but I was going to be; a survivor.
I also discovered there were two somewhat positive terms in common usage among people with cancer; survivor and thriver. People seem to have reactions to both. My initial preference was to be a survivor so I went to my good and well worn friend, Merriam Webster and read;
Survive:
To live, to remain alive
To continue to function or prosper
One that survives
Thriver has no definition in my dictionary. As I write thriver in here, I see that Microsoft spell check has no place either. Maybe their next editions will include thriver.
My next stop were quotes from others and as usual, Lance Armstrong, as famous for his successful battle with cancer as he was with his physical skills on the bicycle, came through, loud and clear; Lance Armstrong: “'if you ever get a second chance for something, you've got to go all the way.”
Sounds like a survivor to me. Carrie Fisher came through with; “I think of my body as a side effect of my mind.”
There is a path, a direction and a personal response needed to reach toward the goal I had set to survive, to act like and be a survivor.
My goal was not measured in time. Weeks, months, or even years mean little, my goal was measured in attitude and a belief that once we set our goals and begin to live them, we fully enter into survivorship. Success is less important than taking the shot.
It did not matter how others viewed me. No subjective or objective view of my future by an outsider would change it. I was in charge of this part of my life.
And an interesting attitude came in here, it did not matter if I was on a long or short road. I had faced my mortality in those weeks and months following my diagnosis, treatment and recovery. I faced it again when I entered a clinical trial. The important part was what would I do with my life, starting now.
I had no idea where I was going, what my final destination was going to be, or when I would reach that place. If my life after cancer was a journey, I may as well to design the route I was going to take.
As a survivor I was going to live. I was going to function, reach out, enjoy it all, do what I wanted to do and prosper.
That seems to sum it up.
Survivor and survivorship are words that embody all that I believe I can achieve within the framework of my life. An attitude, a belief and a direction for all that I do.
I remember the sudden awareness I achieved one day when I looked once again at one of those silly magnetic sayings we attach to the refrigerator. “Today is the first day of the rest of your life.” It suddenly made a lot of sense. Until I faced my own challenge and accepted that the most important part of my life was a belief, a drive and a need to live it to the maximum I would simply be living, not surviving.
I had reservations about how others would accept my new self description until I realized that what we call ourselves is not important, it’s what we believe and how we live our lives. I moved on in a way that let me take charge, move beyond being simply a “cancer patient” “survivor” “thriver” or other term, and begin to live life without the boundaries of a disease and with the will to make whatever time I have left in this world as good as it can possibly be.
Perhaps this realization led me to the statement that drives the work I am doing, coaching survivors to make the rest of their life, the best of their life.
Have I convinced you to become a survivor?
That was not my intention so I hope not.
It is not my place, or desire, to convince you of anything but the simple fact that you control how you will live the rest of your life and that you, indeed all of us, cancer survivors or not, should live the life we want. I hope you accept the premise that you can reach for your dreams, your visions, your goals and make the rest of your life, the best of your life. Over the months we will give you some interesting exercises to help you take some steps toward the goal of reaching your dreams.
For me, I will continue to be a survivor, because that word summarizes what I want to be, and do.
You could even call yourself, chocolate. It is, after all, simply a name attached to an attitude and belief. If chocolate sounds like your definition, great! I will be happy to call you a chocolate. You are aware however that you should be prepared for some laughs when you actually use it.
So, that's how this blog got its name. Was that facinating or what?
What kind of a blog name is that? Take a few minutes and read the article below, How I define myself to see where it came from.
Enjoy the story.
How I define myself.
Through most of my life I have defined myself with words. I was a kid, a grandkid, a teenager, a student, a ball player, a graduate. When I entered the world of work I assumed the title of my profession or, if it were grand enough, by my job title. Then I discovered new definitions and became a husband, father and eventually a grandfather. All these titles were earned.
And then, I became a person with cancer. A cancer patient! Because a great deal of my life was spent working in medical settings and with kids and adults with medical issues, my initial response to my role as patient was negative, I neither liked, nor wholly accepted the idea, fact or concept that I would spend the rest of my life as a patient.
So, what did the fact that my cancer was still present after surgery do to my belief, attitude and view of who I was? I was still a father, grandfather, husband, and professional but who was I in relationship to this disease which had and would to continue to pervade my life?
I must admit that “patient” and “cancer patient” irritated me. Clinical trial subject 203486 scared me even more. Yet to deny my cancer and the reality that I would be followed for the rest of my life by a medical team seemed silly and counterproductive to reality. So, on a warm, spring day I finally asked myself what I wanted to be for the rest of my life.
My answer was pretty quick. I not only wanted, but I was going to be; a survivor.
I also discovered there were two somewhat positive terms in common usage among people with cancer; survivor and thriver. People seem to have reactions to both. My initial preference was to be a survivor so I went to my good and well worn friend, Merriam Webster and read;
Survive:
To live, to remain alive
To continue to function or prosper
One that survives
Thriver has no definition in my dictionary. As I write thriver in here, I see that Microsoft spell check has no place either. Maybe their next editions will include thriver.
My next stop were quotes from others and as usual, Lance Armstrong, as famous for his successful battle with cancer as he was with his physical skills on the bicycle, came through, loud and clear; Lance Armstrong: “'if you ever get a second chance for something, you've got to go all the way.”
Sounds like a survivor to me. Carrie Fisher came through with; “I think of my body as a side effect of my mind.”
There is a path, a direction and a personal response needed to reach toward the goal I had set to survive, to act like and be a survivor.
My goal was not measured in time. Weeks, months, or even years mean little, my goal was measured in attitude and a belief that once we set our goals and begin to live them, we fully enter into survivorship. Success is less important than taking the shot.
It did not matter how others viewed me. No subjective or objective view of my future by an outsider would change it. I was in charge of this part of my life.
And an interesting attitude came in here, it did not matter if I was on a long or short road. I had faced my mortality in those weeks and months following my diagnosis, treatment and recovery. I faced it again when I entered a clinical trial. The important part was what would I do with my life, starting now.
I had no idea where I was going, what my final destination was going to be, or when I would reach that place. If my life after cancer was a journey, I may as well to design the route I was going to take.
As a survivor I was going to live. I was going to function, reach out, enjoy it all, do what I wanted to do and prosper.
That seems to sum it up.
Survivor and survivorship are words that embody all that I believe I can achieve within the framework of my life. An attitude, a belief and a direction for all that I do.
I remember the sudden awareness I achieved one day when I looked once again at one of those silly magnetic sayings we attach to the refrigerator. “Today is the first day of the rest of your life.” It suddenly made a lot of sense. Until I faced my own challenge and accepted that the most important part of my life was a belief, a drive and a need to live it to the maximum I would simply be living, not surviving.
I had reservations about how others would accept my new self description until I realized that what we call ourselves is not important, it’s what we believe and how we live our lives. I moved on in a way that let me take charge, move beyond being simply a “cancer patient” “survivor” “thriver” or other term, and begin to live life without the boundaries of a disease and with the will to make whatever time I have left in this world as good as it can possibly be.
Perhaps this realization led me to the statement that drives the work I am doing, coaching survivors to make the rest of their life, the best of their life.
Have I convinced you to become a survivor?
That was not my intention so I hope not.
It is not my place, or desire, to convince you of anything but the simple fact that you control how you will live the rest of your life and that you, indeed all of us, cancer survivors or not, should live the life we want. I hope you accept the premise that you can reach for your dreams, your visions, your goals and make the rest of your life, the best of your life. Over the months we will give you some interesting exercises to help you take some steps toward the goal of reaching your dreams.
For me, I will continue to be a survivor, because that word summarizes what I want to be, and do.
You could even call yourself, chocolate. It is, after all, simply a name attached to an attitude and belief. If chocolate sounds like your definition, great! I will be happy to call you a chocolate. You are aware however that you should be prepared for some laughs when you actually use it.
So, that's how this blog got its name. Was that facinating or what?
Contributors
Beryl Rullman
Shannon Bart
Andrea Sigetich
Linda Ulrich
Shannon Bart
Andrea Sigetich
Linda Ulrich
Welcome all
Most of the stories on this blog are a bit longer than you may see in other blogs. I write, as I imagine most people do, in a stream of consciousness style. I also want the stories, comment and ramblings to have some value to the reader. I could always just write my thought for me but I wanted to spread the wealth to others. This blog is about being a survivor or a thriver. The original idea was to talk only about and with the process of becoming a survivor of cancer. I believe these comments are actually about surviving almost any significant health challenge which is chronic in nature. Let me know what you think.
I thought the first thing to do in the blog is tell my own story. Our next edition will have a story by Shannon, a coach in the New Morning program.
So, here it is, something I call;
The Power.
From the beginning I thought I could maintain some control over my life yet getting my diagnosis after the tests and then deciding on treatment options, surgery, recovery and entering a clinical trial in a span of 6 months seemed to narrow my decisions to a laser focus on my physical situation. The demands of the medical side of my journey were enough to demand the majority of my energy. Yet within those months, while sitting and sipping tea, starting to exercise again, talking walks and waiting in the semi-comfortable chairs of whatever medical office I was in, all conspired to give me an oppounity to engage in some introspection and reflection.I got a wake-up call however at my three month exam when I got the results of my blood work and found out that my cancer was still with me. After all that, the little bugger was still around.So, back to the doctors again to look at alternatives. Limited at best. I was not sure I liked the idea of being treated in something called a trial, however, after some research, and soul searching, I entered a clinical trial. Over the next two years I was examined and treated every three months, i had two medications, one by mouth, and one injection of a time release capsule. I stopped taking medications about two years ago, I continue to go see my friend Dr. Ted every three months and with great good luck and apparently some very neat medications, I am now entering my 4th year post diagnosis, with, no return of my cancer.I'm retired. So, since I have little love for sitting around feeling crummy, I began to look at my life. I gave up golf years ago when the boredom factor got too much, I can't go fishing every day. There are only so many things we can do in retirement which fill our lives so I looked back at the happiest time of my working life. I realized I felt the most fulfilled, powerful, valued and in sync with my passions when I worked with people I believed I could help. For almost 50 years I was either a therapist or the leader of an organization providing services to clients with physical or mental challenges. As that thought struck me, I just smiled, ah ha!Over the last two years I have been gathering information about survivorship. I joined with other survivors and designed a program designed to work with and for survivors to make the rest of their lives the bbest of their lives. I wrote a workbook and designed an 8 week program for survivors. The pilot group of our program, New Morning, loved it. They were all cancer survivors, from one year to over 20 years. They were teachers, marketing executives, day care supervisors, real estate brokers, administrators and development officers.We have continued to move down this road of survivorship, learning and watching and believing in the power we all get when we decide to accept the fact of our medical challenges, to move on, and to live a life we want.This blog will mostly concentrate on the stories and insights of the author, Beryl, one or more of the other members of Survivor Coaching (Linda, Shannon and Andrea) as we chat about survivorship.And, for those who don't like being called a "survivor" we have some initial insights, or opinions, about the label we place on ourselves. As a matter of fact, the name for this blog gives a hint about how we view the titles we us to describe ourselves.Your comments are always welcome. Your opinions are valued. Your enjoyment and learning is hoped for.
I thought the first thing to do in the blog is tell my own story. Our next edition will have a story by Shannon, a coach in the New Morning program.
So, here it is, something I call;
The Power.
From the beginning I thought I could maintain some control over my life yet getting my diagnosis after the tests and then deciding on treatment options, surgery, recovery and entering a clinical trial in a span of 6 months seemed to narrow my decisions to a laser focus on my physical situation. The demands of the medical side of my journey were enough to demand the majority of my energy. Yet within those months, while sitting and sipping tea, starting to exercise again, talking walks and waiting in the semi-comfortable chairs of whatever medical office I was in, all conspired to give me an oppounity to engage in some introspection and reflection.I got a wake-up call however at my three month exam when I got the results of my blood work and found out that my cancer was still with me. After all that, the little bugger was still around.So, back to the doctors again to look at alternatives. Limited at best. I was not sure I liked the idea of being treated in something called a trial, however, after some research, and soul searching, I entered a clinical trial. Over the next two years I was examined and treated every three months, i had two medications, one by mouth, and one injection of a time release capsule. I stopped taking medications about two years ago, I continue to go see my friend Dr. Ted every three months and with great good luck and apparently some very neat medications, I am now entering my 4th year post diagnosis, with, no return of my cancer.I'm retired. So, since I have little love for sitting around feeling crummy, I began to look at my life. I gave up golf years ago when the boredom factor got too much, I can't go fishing every day. There are only so many things we can do in retirement which fill our lives so I looked back at the happiest time of my working life. I realized I felt the most fulfilled, powerful, valued and in sync with my passions when I worked with people I believed I could help. For almost 50 years I was either a therapist or the leader of an organization providing services to clients with physical or mental challenges. As that thought struck me, I just smiled, ah ha!Over the last two years I have been gathering information about survivorship. I joined with other survivors and designed a program designed to work with and for survivors to make the rest of their lives the bbest of their lives. I wrote a workbook and designed an 8 week program for survivors. The pilot group of our program, New Morning, loved it. They were all cancer survivors, from one year to over 20 years. They were teachers, marketing executives, day care supervisors, real estate brokers, administrators and development officers.We have continued to move down this road of survivorship, learning and watching and believing in the power we all get when we decide to accept the fact of our medical challenges, to move on, and to live a life we want.This blog will mostly concentrate on the stories and insights of the author, Beryl, one or more of the other members of Survivor Coaching (Linda, Shannon and Andrea) as we chat about survivorship.And, for those who don't like being called a "survivor" we have some initial insights, or opinions, about the label we place on ourselves. As a matter of fact, the name for this blog gives a hint about how we view the titles we us to describe ourselves.Your comments are always welcome. Your opinions are valued. Your enjoyment and learning is hoped for.
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