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
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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