An Open Letter

If you are reading this we probably have something in common - cancer.

I think the picture representing stormy weather is appropriate because it is sort of the place we find ourselves when we are dealing with cancer or some other storm.

I am a cancer patient. The hospitals and oncologist offices are filled with us. The obituaries list "after a valiant fight with cancer". It seems that almost everyone knows somebody with cancer. I think we need to be taught about survival techniques. I have some ideas to share although I don't know a lot about the disease. Sometimes, though, I think I know something about surviving it. Then, on the other hand, perhaps, I'm just lucky.

I had colon cancer with metastasis to both lobes of the liver. The operating surgeon told me that statistically I had six months to two years to live; he told the family I had four to six months, closer to four. The oncologist told me that I was going to die; I was not a candidate for surgery; I was not a candidate for transplant; they could keep me alive for a short while with chemotherapy but I was still going to die. A second opinion gave me only four months to live. Those predications were made between December, 1996 and February, 1997.

Later, one of the family told me, "Maybe three weeks." I haven’t confirmed that was ever said.

Much has happened between then and now.

I believe in surgery, pharmaceuticals and developing our own strategies for survival.

I suggest that we don't necessarily have to be a statistic because some of that is up to us. I believe the medical folks treat us for the disease but they don't teach us how to survive. We must learn some of that for ourselves.

I still visit the oncologist. I still have scans. I am still a cancer patient.

I hope this website will give the visitors hope and ideas. I believe we do have a right to live.

I look forward to hearing from you.

Bob Vandegrift

My Home Is In

THE HOUSE OF CANCER

(The Case for the Three Legged Stool

as described by Dr. Herbert Benson)

1996-2010

By

ROBERT L. VANDEGRIFT

I am Bob Vandegrift

I am a cancer patient

And I have something I want to say.

A preface is supposed to be first but in this case I am writing a pre-preface. In the pre-preface I can tell you that you will see duplications of thoughts because words were written at different times for, perhaps, different audiences but with common themes. This ends the pre-preface.

The preface is sort of a postscript now but it returns to the beginning for me. I lived the story that began fourteen years ago. I began writing it for me as a part of my own therapy but it was only a short time before I began copying it to share it with others when friends, or friends of friends, asked me what I was doing because it seemed to be working.

This is my story.

PREFACE

I am a cancer patient. The hospitals and oncologist offices are filled with us. The obituaries list “after a valiant fight with cancer”. It seems that almost everyone knows somebody with cancer. I think we need to be taught about survival techniques. I have some ideas to share although I don’t know a lot about the disease. Sometimes, though, I think I know something about surviving it. Then, on the other hand, perhaps, I’m just lucky.

The doctors didn’t expect me to live beyond the summer of 1997. When they predicted I was going to die, and that only chemotherapy could extend my life a short while, I thought about what I might do. I didn’t want to die. I thought very early about alternatives because medical doctors told me that I have only a short time to live.

I didn’t know how many people look to alternative medicine as an option until, sometime later, I read that Dr. David Eisenberg of the Harvard Medical School estimated that Americans made 425 million visits to alternative medical providers in 1990, exceeding the 338 million visits made to all U. S. primary-care physicians during the same period. That was a surprising statistic to me. Those are 1990 figures. They must be much higher now.

Diet was first presented to me by my son even before I left the hospital. Soon, I learned about Hospital Santa Monica. They sent a video, literature and called several times. Some of the family thought I should go there. I wasn’t convinced. Probably more by accident than by design, I located a medical team which I could believe in and I began developing some of my own strategies. I used surgery, pharmaceuticals and I began my attack one step at a time. I think some of my ideas have produced miraculous results. Pictures, history of the lesions and tracings became the basis of imaging and visualization.

I suggest that we don’t necessarily have to be a statistic because some of that is up to us. I believe the medical folks treat us for the disease but they don’t teach us how to survive. We must learn that for ourselves.

Each day, I say,

“Thank you for today,

Thank you for yesterday,

Thank you for the anticipation of tomorrow”.

A friend from many years ago sent the following.

THE MAGIC WORD

(Attributed to R. L. Kottmeyer)

The magic word will give you the power to arrange events, employ the law of averages to insure your success, put anybody or any resource at your service, get you the counsel of leaders, help you avoid many disagreeable things in life, get others to do what you want them to do, and get you almost anything you want.

The Bible says it’s true!

Doctors use it. Lawyers use it. Leaders use it. Sales people use it. Educators use it. Anyone who’s success depends on getting or using information uses it. The word isn’t magic all by itself, but the use of it produces such magical results it seems like magic.

The word is ... ASK!

Ask and you shall receive – we have all been trained to say yes.

Ask for the order. Ask for the answer.

Ask and maybe the person will marry you.

Asking through testing is the basis of all science.

Ask the expert and get the best advice or information

Ask for a discount or a better deal. Ask for the job you want.

Ask strangers soft questions and start conversations.

Ask important people for their advice, counsel, and get to know them.

THE VERY ACT OF ASKING WILL GUARANTEE THAT, IF YOU KEEP AFTER IT, YOU WILL BE SUCCESSFUL!

INTRODUCTION

My home is in The House of Cancer. My lease was for six months to two years or, perhaps, for four to three months or, perhaps, for about three weeks. I heard it all. “He has four to six months. Probably closer to four.” Most would not agree with my sentence structure but I found my prognosis went backward rather than forward. It was an oral opinion by at least three doctors and was not binding on me. Doctors cannot tell us when we will die and if they do we should change doctors.

I was sixty-eight years old and admitted to the hospital in December, 1996 with abdominal pain and nausea and a history of diverticular disease. I had been treated a few times for diverticulitis over several years but on December 20^th, during surgery, Dr. Jan Freeman found colon cancer, a mass which was baseball in size at the splenic flexure with metastasis to the liver. Dr. Freeman operated. A result of the operation was a colostomy. It may be true that I can live with a colostomy but it has been difficult. It is not only noisy and embarrassing but I find it sometimes to be a balloon that can rupture at all the wrong times and in all the wrong places and there is no hole deep enough to hide in.

As to whether I ever had diverticular disease, it is questionable because the radiologist’s report from the University Hospital indicated there was no evidence of ever having had diverticulitis. I believe my internist failed to give the proper diagnosis and I was not as persistent as I should have been based upon my symptoms. We normally take each day in stride as long as our bodies seem to be functioning. I don’t know how long I’ve had cancer but I believe it’s been for quite a while.

Dr. Freeman apparently told me sometime after surgery that I had cancer but I don’t remember it. Everyone tells me that I knew about it and talked freely. Any time there was pain I would push a button and I didn’t feel anything any longer. I suspect I pushed the button too many times and the disease faded from my mind.

I realized my situation had to be serious when our children and grandchildren came to visit, especially when family came from Texas and North Carolina. Our daughter, Jana, called from Texas and she told me that when I answered the phone I said that I could not talk with her because I was dead and the phone went silent in her ear.

I didn’t hear any celebration but the New Year started with a bang, anyway! The first thing I remember on January 1, 1997 was when Dr. Freeman came into my room. He appeared uneasy and fidgety. He paced the floor and he finally said, “Do you know what the problem is with your liver?” I answered, “No”. I hadn’t remembered being told that I had cancer but, without knowing why, I asked him how much time I had. He said, “Six months to two years.” The fact that I asked the question would suggest that I knew the answer.

Since then, I have decided that doctors are taught in medical school to tell patients, “Six months to two years.” That way, they don’t forget the answer. I must admit, this is tongue in cheek but so many patients hear “six months to two years.”

I remember a day back in the sixties. I drove into the service station where I normally traded. Glen came out to pump gas and I asked him how things were going. I could tell that he was stressed. He said, “Oh, Van, I just got back from the doctor. I have cancer and he said that I have just six months to live.” Glen was only in his thirties. He had a wife and young children. He died just about to the day the doctors told him he would die.

I didn’t deal with the revelation of my eminent demise very well. He told me he would have Dr. Regina Klein, an oncologist, come by and see me, that she was very good and I would like her. I told him I would not see her while I was in the hospital – it would have to be later.

I knew I wasn’t thinking too clearly and I wanted my wife, son and daughter-in-law, a non-practicing nurse, to be with me when I met with Dr. Klein. Not only that, I was not emotionally prepared to meet with an oncologist yet. I thought that’s the end of the road. When it’s time to see an oncologist, it seemed to me, the cards have been shuffled and the game is almost over because the hand you have been dealt is a loser’s hand. Later, I found in my reading that patients really are not prepared to make decisions they have to make that soon after surgery.

I was in a state of panic and Dr. Freeman quickly left the room. I believe he stepped out to the nurse’s station where he enlisted the aid of two nurses to come to his rescue. They were in my room within seconds. The first words I heard from Nurse One was, “Mr. Vandegrift, are you afraid of death?” My response was, “No, I don’t think so but I’m not ready to die.”

The fact is, I was afraid. Maybe I wasn’t afraid for what I would find on the other side as much as I was afraid for what I would be leaving behind but there was fear none the less. It may not be death, it may be the timing of death that bothers me. I imagine that even in twenty years the timing may still bother me depending upon other health factors. I am not interested in eternity right now. Eternity will be there later. It’s nothing that is going to go away.

We don’t seriously think about our own mortality until a doctor (the expert) tells us we don’t have very much time left. We don’t seriously think about it even when we are shown the mortality tables by an insurance salesman. We don’t think about it applying to us when we attend the funeral for a friend who is younger than we are. I am interested in living and seeing what great things there will be in the upcoming century. Life is the greatest of all gifts and I intend to fight to preserve it.

They wanted me to take walks down the corridor and eat in the dining room with the old folks. I refused. What they were talking about was trivial. I couldn’t believe they were trying to divert my attention from what they had just told me. I had just been told that my life was coming to an end and they were asking me to exercise and eat. At that time, I truly believed that if I remained in that hospital and listened to them, I would surely die. I felt that they were preparing me to die and I wanted some one to tell me I had a chance to live. Nobody said anything that I wanted to hear. I decided that a lot of doctors haven’t been taught that there is hope as long as there is life.

Sometimes doctors don’t pay any attention to the patient. I had told Dr. Freeman that I didn’t want Dr. Klein to come while I was in the hospital but she came anyway and I sent her away. I told her that I would make an office appointment with her.

I made that appointment after I was discharged from the hospital. The visit lasted only a few minutes. Perhaps, she remembered that I wouldn’t see her earlier when she came to my hospital room because her comments were short and to the point and, from my perception, without feeling. She said, “You have colon cancer with metastasis to the liver and you are going to die. You are not a candidate for surgery and you are not a candidate for transplant. We can give you chemotherapy and keep you alive a littler longer, but you are still going to die.”

My understanding was that if cancer had originated in the liver and there was no cancer anyplace else in my body, then, perhaps, I might have been a candidate for transplant. The fact that cancer traveled from the colon to the liver might mean that cancer had traveled to other places in my body, too. Scans have not indicated cancer to be any place else.

I told her that Dr. Freeman said that statistically I had six months to two years to live. She told me that is correct. I asked her what my death would be like if I took chemotherapy and she told me. I asked her what my death would be like if I did not take it and she told me. I didn’t see very much difference in the two choices. I would die in either case.

I suspect the reason many patients elect not to take chemotherapy is because they have been told they are going to die -- period. Why should we take chemotherapy if it doesn’t change the outcome? I told her that the doctors said how much I would like her, and that she probably was a very nice lady but she had nothing I wanted and so we excused ourselves and exited to, frankly, a scary future not knowing what I would do.

On my follow-up visit to Dr. Freeman, for the purpose of removing staples from the colostomy, I told him about an experience in the hospital. One day, I opened my eyes and I saw Dr. Nelson, my internist, sitting near the bed. I’m not sure if he was really there or if it was imagination in my mind’s eye but he said, “I just wanted you to know that when you were my patient you didn’t have this thing.” I closed my eyes and when I re-opened them he was gone. Dr. Freeman smiled without saying a word.

When we get cancer, all sorts of advice come to us by well meaning people who know how to cure cancer or by people who know somebody who knows how. Maybe they are not all well meaning because some may have a financial interest in the cancer patient but, I believe, most of them are interested in seeing us live. There are vitamins and supplements and herbs. There are alternative treatments and alternative hospitals that claim great success. It was difficult to make decisions at that time. In fact, it was overwhelming but I believed that if I had a doctor who didn’t give me any hope, I should find another doctor. That made sense to me so I started looking for someone else.

I am fortunate that I have a cousin, Gene, who is a surgeon. Our talks had to be long distance because he lives in the State of Washington. I sent him copies of the hospital reports. I told him what was happening the best I could. He felt that, perhaps, cryosurgery – the freezing of tumors – was my only hope.

I suppose he felt that way, not that he was an expert on cryosurgery, but he had read optimistic reports about it and, based upon the results I had sent him about my condition, I assume he thought that I might not make it any other way. This was the first dangling of hope for me.

Gene said that the University Hospital had just acquired the equipment for cryosurgery and that one of the doctors had received training on the equipment but had not yet performed any operations.

My initial reaction was that I didn’t want to be first. I wasn’t aware of many hospitals providing this service. We learned it was being done in San Diego and, possibly, Houston. We saw an ad in the local paper about a Los Angeles hospital searching for candidates for cryosurgery.

Our son and daughter-in-law said, “Let’s take a vacation in San Diego and go to the hospital and talk with them directly.” We did that. We didn’t see a doctor, only a coordinator. What we saw first hand was Tijuana. The end result was that nothing worked out, only the dickering on Tijuana streets.

Dr. Freeman suggested I get a second opinion from Dr. Belnap. He also told me there may be someone someplace who could do something. That was the closest comment he ever made which could be construed as hopeful.

It had been over three months since the operation. I was pursuing cryosurgery options but getting nowhere. I made an appointment with Dr. Belnap for a second opinion. He said, “There is four times as much cancer in your liver since the last scan. Get your affairs in order because you have about four months to live.” He told me how lucky I was to have had such a fine surgeon operate on me. He added that he had just played golf with Dr. Freeman that morning. What he had actually given me was a second first opinion.

I told Dr. Belnap I was looking at cryosurgey, perhaps, at the University Hospital. He told me that cryosurgery was quackery and insisted the University Hospital did not have the equipment, anyway. He didn’t say, “I think it’s quackery.” He said, matter of factly, that it was quackery. There was no room for judgment. He gave me no hope for living, that chemotherapy was my only option to extend my life a short while. He was telling me to “Get on with getting your affairs in order because you aren’t going to make it.”

I believe doctors have the responsibility to not say and do things that are detrimental to their patients. They need to understand that as long as we are alive, we should exercise hope.

Though I had been told that I had six months to two years, one of our daughters-in-law told me sometime later that Dr. Freeman confided to the family that I had four to six months, closer to four. He told another that I had about three weeks. These are reported statements to me by my family and I did not confirm them with the doctor. At any rate, in all cases, my family believed my situation was hopeless.

I am certain that many patients have died about the time their doctor predicted. The doctor is the expert. It may be the doctor’s prediction is not necessarily accurate but, rather, the patient followed the doctor’s prescription for death. I believe the prognosis given to the patient places such a burden on many patients they elect to die. They are unable to overcome it. I didn’t need any doctor who said I would die.

To make my point about how things can impact our thinking, I want to return in time to April, 1996, about eight months before my surgery, to Good Friday.

It was twenty minutes before four in the afternoon and the traffic was mounting when my car stalled in the middle lane of the interstate. Vehicles careened around me on both sides trying to avoid an accident. They screamed to a stop behind me. It was the type of situation which would result in a chain of accidents.

I believed it was impossible to get off the interstate alive. I got out of the car, figuring “I would take it like a man.” All sorts of vehicles were swishing around me and I remember thinking, “Please, not this way!” It was a prayer. It didn’t begin with, “Dear God”, but it was a prayer, none the less. All of a sudden, an 18-wheeler, or what ever it was, stopped and blocked traffic. I was safe and a courageous young man who got out of his car behind me to help, he too, was safe and we pushed the car out of the way of traffic.

Several times during 1996, I remember thinking that when it is my time, that I hoped to have some notice. I often thought about that incident on Good Friday, “Please, not this way!” I wanted time so that I could tell people what they have meant to me, to write a family history, and put affairs in order. I thought of these flashes almost as half prayers. Now, I had cancer and I wondered if, perhaps, several half prayers had added up to a whole one.

In November, just a month before, I paid off my funeral plan and in December, the day before I went into the hospital, I wrote our Christmas Letter. In it, I cited two gifts for the year. One of these gifts was for the genes passed on by mom and dad. Dad was ninety-five at the time and mom was ninety and so we ought to be able to expect a long life.

Three doctors had given me their prognosis. All short term. My funeral plan was newly paid. There on the interstate, I had asked for time. Was I now being given only a few months to complete all I had to do? I had done nothing about anything since I walked away from all those vehicles swirling around me on Good Friday.

I struggled with what the doctors had told me and unresolved commitments confounded me. Was I being punished for not following through with petitions? Eight months of time, combined with three threats of death, overwhelmed me. I could not disassociate these happenings from the doctor’s prognosis.

The mental part of this was very difficult and, I believe, it was contributed to by doctors who are matter of fact and told me that a patient cannot survive a far reaching metastasis to the liver. The tumors were many and one sat on the major blood supply. The doctors may have been accurate according to what they saw on the scans and what they had been taught but it made it very difficult for me to find anything to hope for.

Sometimes, even still, I am haunted by that original prognosis given by those first doctors and I kick that sucker right out of my mind just as quickly as possible. Sometimes, it takes longer than I would like.

My fortunes were beginning to turn, for over the next three weeks, I began to locate a medical team who I had faith in and could believe in unconditionally. More than three years later, I was still in the forest, not out of the woods yet, but the tumors had reduced about ninety eight (98%) percent, according to the way I figured. I didn’t leave it up to the medical people to decide how much the tumors had reduced.

I have had interesting times in my life. However, this has probably been the most significant period. I try to be positive all of the time. It doesn’t always work. There were times during the first eighteen months when I could not control my feelings as I thought I should. It was like an attack that would sneak up on me, and my eyes would tear up and I would cry quietly on the inside so that nobody could either see me or hear me but with a shout within, “Why me! Why me?”

I don’t know what I have done to have had as much success as I have. I know I am blest and very, very lucky. There were a number of things, some conventional and others unconventional, and I attributed the success, at that pont, to all of them: God, prayers, doctors – their skill and medical expertise – a clinical study, the support of family and friends, my faith and will. Each one of these affect the mind and the mind can affect our illness in either a positive or negative way.

There is a cast of four from “The Wizard of Oz” who could find themselves in this story. First is Dorothy. In her dream, she wanted to leave Kansas and see other places. She found the Kingdom of Oz and eventually sought the Wizard who lived there. During her journey, she learned what the most important things in life were. Home, Aunt ‘Em and Uncle Henry, and her dog “Toto”.

Her friends, along the way, were the Scarecrow, the Tin Man and the Lion. The Scarecrow had no brains but he mustered the ideas necessary to locate the Wizard. The Tin Man had no heart but he taught the others what true heart is -- serving. The Lion may have been cowardly but, in the end, became courageous. It requires the messages and the transformations of Dorothy, the dreamer and adventurer, the ideas of the Scarecrow, the heart of the Tin Man and the courage of the Lion, and the loyalty to each other, to overcome the Wicked Witch. It is easy to lose focus on the goal.

At some point, early on, I decided that I needed a guardian angel. There was no question about who my angel should be. I want to share a love story because my angel is the central figure in it. About the turn of the century two men loved the same young lady. Some of the family had said that if ever there was an angel on earth, it was Julia. One of the men was a young German immigrant who may have never spoken to her about his love but she knew, all the same. There was gossip about it. The other young man was dashing and handsome and won her heart and they were married on Christmas Day in 1900.

But, that isn’t the end of the story. It isn’t even the important part. It’s really just the beginning. Julia had children and she died very young. Her husband went on, remarried, thus providing a mother for their children and continued on with living. The young immigrant became very prosperous but he never married. He cared for the grave of his sweetheart until he died many years later. He was buried in the Sandhills of Nebraska along side of her. His family knew nothing of her, only that he had loved her. If her family, after a life time, believed she was as close to an angel as they had ever known, and the young man cared for her after she was gone for his entire life, she must have indeed been some one very special.

The lady was my grandmother and I knew I wanted her to be my guardian angel. Her face covered the monitor of my computer as wall paper. I saw her face each time I turned on the computer and I was reminded of the role I asked her to play.

I wanted to share my ideas in the hope that what I had done may encourage others to take control of their destiny and be creative to find a way to survive because life is a gift.

Much of what I did was based upon instinct. I did it because I thought it was what I ought to do. When I first learned that I had cancer, there were three things I initially did: pray; read, and consider diet -- what should I eat and drink? I searched for Internet information. As time went on, reading about cancer and worrying about diet became less important.

I didn’t do all that I probably should have done. It had not all been as timely, on my part, as it should have been. I wasted time which may have been both risky and foolish. I suspect it was. Of course, I don’t know how things would have come out had I done things differently.

I decided, early on, that I would not become pre-occupied with fighting cancer but I would do something toward it each day. I had too many things to accomplish to devote all my time to fighting the battle. I believed I needed to fight smart.

I set goals, both short and long range, with the idea that I would see them through. For all my good intentions, it had not been possible to set the thoughts of my cancer aside. It was with me each day and each night. It may not have dominated my thoughts but it was always there.

I believe we have to balance the fight. Like a game of cards, we have to play the hand we’re dealt. I don’t know how much room there is for playing the wrong card in this game but, I believe, there is some room. I think it’s important to take part, along with the experts, in the fight that is threatening our life. The game must condition our mind to believe and have faith because we will surely fail if we do not have faith.

From the book, “Getting Well Again”, the authors talk about setting goals. “On receiving a cancer diagnosis, there is a tendency to begin living tentatively and conditionally. Frequently, people withdraw from relationships or refuse to make commitments. Not only does this establish the negative expectancy of death rather than recovery, this tentativeness can also significantly diminish the quality of life. The will to live is certainly strengthened, even when life is threatened, if people ensure themselves of meaning and pleasure.” I added relationships rather than withdraw from them.

I tried to live like I was going to live and not live like I was going to die. I dreamed and set goals. I wanted grand goals. Not just mediocre ones. The first year, 1997, I set three goals. I accomplished two of them. One was to remodel our home and another was to invest in a speculative venture. I accomplished those two goals. I went to the bank and borrowed $50,000. I spent $40,000 on the home and $25,000 on investing. (I had to draw on some business money to finish the house). The third goal was to develop a computer game to fight cancer. I wasn’t able to accomplish that one. However, I believe fighting the images on my computer gave me a kick start. There were many subtle benefits from it.

It was important not to quit setting goals just because I had a good year. I had to believe it was important to continue.

In 1998, again I set three goals for 1999. I wanted to buy a Cadillac, publish my story about cancer and call it a book, and be cancer-free by the end of the year. I need Cadillac dreams – not Compact dreams. I bought the Cadillac although it’s not a new one.

I took the manuscript to the copy shop and made copies, as needed, and mailed them to cancer patients, usually at the request of family or friends. The third goal was within sight but I missed it by a couple of percentage points. They were magnificent goals and dreams.

I also set small goals. During 1999, I began collecting Vandegrift memorabilia. I found there was a Vandegrift Distillery in Pennsylvania and I was able to buy some unused labels. I had never imagined it was possible but the Internet made it a reality. I looked for ideas that would make life interesting.

What I shared with others was is in no particular order. New ideas came along all the time and I tried to implement them as long as they made sense.

THE TWO P’S, PLUS

The two P’s: Panic and prayer. They came in that order. The doctor said that statistically I had six months to two years to live. I felt panic.

When we face our own mortality our faith is tested. There was a lot of panic and prayer by the time I was told to get my affairs in order because I had only about four months to live by that time.

As far as I was concerned death was my enemy. I told a pastor friend that I didn’t know what to think about death. He said that grace will set in when we get close to it. He may be right but until grace does set in I will consider death to be my enemy.

“Yea, though I walk through the valley of the shadow of death, I shall fear no evil.” As I think about friends who have died, those younger than me, more important than me, and as I read the obituaries, it was quickly seen that we all walk through the valley at a different pace. I’m in no hurry. I want to putter along and take as long as possible as I was busy with other things. I wanted to stroll. I didn’t want to run.

During the 1950's, I read that more knowledge had been gained during this century than, perhaps, all recorded history. I could not have envisioned the changes since then. We may believe the changes haven’t necessarily all been what’s best for us but we are not the judge or jury. We are only observers and participants in life. I want to see what happens in the future and how we solve problems, both politically and personally. I want to see our grandchildren grow and see what great things some of them might do. I wasn’t talking about greatness as far as how much money they make. Rather, I was thinking of greatness in terms of goodness and human qualities. I wanted time to be proud.

Panic and prayer. Why me? I read a column written by Tom Ehrich who is an Episcopal priest in Winston-Salem, North Carolina. His column was about a woman who lost her son to cancer. Why did he die when others live? Where was God? What happened to her prayers?”

He continued, “I believe God allows death. I believe it causes him as much pain as it causes us. To me, that is the central mystery of creation: a God who suffers, a God who loves us and yet does not control our lives, a God who weeps with us. Where was God when your son was dying? I believe God was weeping.”

He went on to say, “I believe that God is beyond our control. I believe God has chosen to let creation exist beyond his control. I don’t believe God sits in the heavenly realm deciding who is going to die today. We attribute control to God, because we find freedom to be frightening. I believe God nudges and comforts, but the underlying chaos is always with us.”

There have been times in my life when it seemed that there was no reasonable explanation for surviving, that perhaps we do have an appointed time. This is one of the great mysteries of life. The fact is, we don’t know if we have an appointed time and, therefore, there is ample reason why we should assume the role of warrior.

How do we get pessimistic ideas out of our mind and truly believe that we can live and give ourselves a chance when we have been told there is little or no chance. I believed then as now that it is necessary to believe that it’s not our time and that we haven’t been predestined to depart this life in four or six months and, further, we have something to say about it.

I believe prayer is the natural order of behavior when we face pain or difficulty, even for the un-churched or for the person who doesn’t normally pray. Ehrich said, “We pray to God because we have no other choice.” I prayed. My family and friends prayed in my behalf. I was placed on prayer lists at a number of churches in a number of states. There were people who had never heard my name before but they lifted up prayers for me.

As time went on, I very seldom prayed for myself. I had not thought about it before but I came to believe intercessory prayers are the most significant and so because others prayed for me, I prayed for others. Sometimes, when I found myself preparing for a new scan, I sort of bent the rules and made it a little personal. I had my own prayer list and still do today. They don’t all have cancer but they are all facing tough times. I think this notion is sound because we find ourselves thinking about others rather than ourselves.

Prayer comes in many forms. My maternal grandfather was born a Quaker, as were his ancestors on both sides. I want to say something about prayer as the Quakers believe, as I was told by one of that faith. He said, “Their equivalent to praying for someone is expressed as “holding them in the light”. The act of thinking good thoughts about someone, or an act as simple as picking out a card for someone who is ill, putting it in an envelope, addressing it, sticking a stamp on it, and placing it in the mail is an act of “holding a person in the light”.

An article was published by Beth Baker, a Washington-based free-lance writer, entitled, “The Mind-Body Connection” and was subtitled “Putting the ‘Faith Factor’ to Work”. The subject of her article was Dr. Herbert Benson. Others have written about him, too. This author says that he reached conclusions about the importance of faith after years of research and teaching at Harvard Medical School and Harvard’s Mind/Body Institute which he founded in 1989. He believes human beings are “wired for God”, that the very act of believing – no matter what our religion or philosophy – can help keep us well. Bernie Siegel also suggests there is a celestial connection between man and God.

I have always been ecumenical and inclusive in my Christian conviction and I believed he was saying something very close to my thinking, that when we were created – the Creator created in the creation an ethereal web of communication which is sensitive to not only our thoughts and prayers, but also, receptive to thoughts and prayers of others. I believe the very act of knowing that others are praying for us is a very mighty force, indeed.

Dr. Benson’s early research showed there is a link between the mind and healing. He “likes to describe the ideal health-care model as a three legged stool, made up of pharmaceuticals, surgery and self-care. And part of self-care includes beliefs and the relaxation response, an anti-stress technique.” He found, in one of his studies, that those who said they were more spiritual reported fewer medical symptoms.

I think the connection between our mind, spirit and will and getting well has been proven. I know I will have to die sometime but I wanted to fight a good fight and enhance my chances of complete recovery.

In “Fighting Cancer”, I read that the M. D. Anderson Hospital in Houston, Texas, which is one of the foremost scientific research and treatment centers in the country specializing in cancer, indicated there were approximately three hundred beds in their hospital with six full-time clergymen. Faith plays a critical role in healing. There have been trial studies which indicated that those who were prayed for had faster and easier recovery with fewer side effects. The evidence is there and I am grateful for all those who have prayed for me. I believe it made a difference for me. One of the reasons may be that I couldn’t let all those people down, and therefore, I was more likely to use my mind and spirit to assist in the healing process.

After prayer, came the issue of forgiveness. In my mind, the two cannot be separated. Who had I offended and needed to ask for forgiveness? And who had offended me? I thought it necessary to be at peace if I were to be successful in my struggle against cancer. I didn’t want to fight the battle, month after month, and have a phantom lurking around.

One of my first thoughts was what had I done to cause the cancer. There are several reasons I have read about that may cause it and they all affect the immune system. The reasons, for the most part, would have been impossible for me to control.

If I would have had the opportunity to evaluate the genetics of prospective parents, while still in my pre-existence, and consider a possible disposition toward cancer, would that have helped? I don’t think so. My father has now passed on. He died at ninety seven years of age. My mother is ninety three. However, we know genetics does play a role in cancer.

What about Utah? During World War II, atomic testing clouded the atmosphere, drifted over areas and settled upon people. It caused cancer in many people. I don’t know that it played any role at all in my case.

I had illnesses when I was young. Did some of these illnesses weaken my immune system? I have had traumas, life crises and stress. Should I have been more self controlled and laid back? Should I have avoided difficult issues? Was it poor diet?

I believed stress may have played a part in my cancer even before I heard there was research about it. Sleep deprivation may have played a role. The inability to get a good night’s sleep on a sustained basis may weaken the immune system and I have had trouble sleeping for a long time.

What caused my cancer? I don’t know and it’s really not important now.

The book, “Healed of Cancer” is about Dodie Osteen’s struggle with cancer. On Thursday, December 10, 1981, the doctor told her husband, “Pastor, your wife has metastatic cancer of the liver. With or without chemotherapy, she has only a few weeks to live. We can treat her, but it will only slightly prolong her life.”

“John couldn’t believe it. He said, ‘Doctor, I am going to take my wife home. We are going to pray and seek God, and then we will decide what to do. We believe in miracles, and we believe in the Miracle Worker.’”

The book tells of how she dealt with her cancer. She opens her book with Psalm 30:2,3 : “O Lord ... I pleaded with you, and you gave me my health again. You brought me back from the brink of the grave, from death itself, and here I am alive!”

She outlines forty healing scriptures she used to win her battle over cancer. Dr. D. L. Moore, M. D., stated, “I reviewed all of Dodie’s reports, and I must tell you that knowing all the doctors and having seen all the tests and X-rays has made a tremendous impact on me. It is one thing to read about miracles, but another to watch one happen.”

The prognosis that Dodie Osteen received in 1981 is almost identical to the one I received from Dr. Klein in early, 1997. It is apparent that medical science did not play a role in her recovery because she took none. Her medicine was prayer and faith. The result was a miracle.

I don’t have experiences with miracles coming to fruition in an instant but I believe they can happen regardless of any grim prognosis. I suppose I’m inclined to believe miracles may take time to accomplish. I don’t think they are normally overnight affairs. I thought that if it took me another year to beat the cancer, even that would be a miracle. I thought if I could use prayer, mind and spirit, and a little stubbornness, in conjunction with medical science to eliminate the cancer, whenever that would be – it would be a miracle because the doctors said it couldn’t be done.

In the Bloch book, the author said that Norman Cousins found that watching funny movies had an excellent effect on him and further that several hospitals have put in a “laughing room” where tapes of funny movies are continuously shown for the benefit of cancer patients. I’m not a great outside laugher. I’m more inclined to chuckle on the inside. I bought “Cabin Fever” which consists of nine videos of “The Little Rascals”. We also joined the local chapter of Laurel and Hardy. Then and now, I have a few extra laughs.

Early on, almost from the beginning, I used music on a daily basis. I listened to Burl Ives as he sang gospel music. Every night after I went to bed I listened to his music for thirty minutes. I found a certain peace about it. There were studies about music playing a part in aiding the immune system. They are probably not talking about gospel music but the most important thing to do is remove stress wherever it is and I found gospel music did that. Listening to music lasted for five or six months.

There is a minister who had an impact on my thinking long before my cancer. Early on Sunday mornings, I watched Robert Schuller of the Crystal Cathedral. His message: Positive Thinking! Possibility Thinking! Power Thinking! His guests are sometimes just as important as his sermons. Sometimes, even more so. They are normally people who have succeeded in some extraordinary goal as a result of positive and possibility thinking, their faith being a common thread. I remember one person who had brain cancer and was given a very short time to live. He survived. He attributed his recovery to medical science and God. Whatever the reason, it was the gift of life.

I don’t recall seeing anybody on Schuller’s program who relied only on God to overcome diversity. Three words. I would call it an admixture of God, Doctors, and Patient.

Dr. Schuller begins each service with, “This is the day the Lord has made. Let us rejoice and be glad in it.” Rejoicing in the day is an affirmation of wanting to live. If we soak in the words that we appreciate life often enough, then perhaps, it becomes a nutrient for our desire to live.

FIRST HOPE

I received a follow-up phone call from Gene who said he had received a call from a doctor at University Hospital. The call was to discourage me from seeing Dr. Benjamin Kim, the surgeon who had been trained in cryosurgery. Their message was very clear. He told Gene that he would not send a cousin of his to see Dr. Kim, and that he was disliked and the hospital would like to get rid of him but he had tenure. However, I made the appointment with Dr. Kim, anyway. He saw me the next day. I took the scans from the hospital where I had the surgery in order for him to review them.

When we arrived at the hospital we met Jayne Leigh, Dr. Kim’s nurse. We visited for a few minutes because he was still with a patient. I told Jane that my understanding was that some of the doctors at the hospital didn’t like him. From her expression, I think it took her a little by surprise. She said, “Well, that’s probably true but his patients do.”

That was a very good answer because, I think, doctors often belong to the “good old boy” network and they normally don’t have much criticism for their fellow doctors. They aren’t like car salesmen who criticize the competition and have a better deal than the dealer down the street. I believe if we have something seriously wrong with us, such as cancer, we should be very careful about who we select as our physician and we should have recommendations from other patients and, perhaps, those need to be taken with a grain of salt. It may require some divine intercession, or a lot of luck, to find the best doctor.

I didn’t ask for further recommendations because I believed very quickly that Jayne was right. Within twenty-four hours, I was convinced I had located the best doctor for me. Dr. Kim was Harvard trained and believed in surgery, pharmaceuticals and alternatives.

Dr. Kim spent about an hour with us and was the most uplifting of any of the doctors we had seen. The prognosis did not look good but he wanted to keep the scans and study them. I’m sure other doctors did not spend the time reading and considering the options that he did.

The following evening, about twenty-four hours later, Dr. Kim called and said he had reviewed the scan with others and he thought there might be something that could be done. He proposed further surgery. He told me it might be risky but I told him, “Let’s do it! Just don’t kill me on the table.” He assured me he had no intention of doing that and I understood the risk had more to do with whether the operation would be successful.

He considered an operation which involved both conventional and cryosurgery. It would be necessary to have further scans to be certain that the cancer could not be seen anyplace else.

I would like to quote two paragraphs from the book, Fighting Cancer, A step-by-step guide to helping yourself fight cancer”.

“Cancer is a unique disease. There are five factors that make it different from any other known illness. First, cancer cells grow geometrically without limitation. That means 2 becomes 4, then 8, 16, 32, 64, etc. If they grew 1, then 2, 3, 4, 5, we probably would never have heard of it. Because of this geometric growth, we must treat it promptly and properly or it can soon grow to a point where it may be untreatable. If we break our arm and it is not set properly, we can have it reset again whenever we want. It is not irreversible and terminal.

To further illustrate the way cancer grows, picture algae covering a lake. This algae doubles in area each day until, after one month’s time, it completely covers the lake. When should it be noticed? When it covers one half the lake? That is the day before the end of the month. When it only covers one fourth of the lake? That is two days before the end of the month. If you caught yours three or four or five days before the end of the month, you must feel very grateful.

The question in my mind was, “Had I waited too long?”

During one appointment, I talked with Dr. Kim about a book I had received from the American Cancer Society. In it was a chart which showed the steps from the beginning stages of cancer until the point of death. I think there were thirteen steps. I told Dr. Kim that it appears I am on the eleventh or twelfth step. He paused for a few seconds. Then he said, “You are probably right but throw that book away! You don’t have to be a statistic. Some of that is up to you.”

That was the most important demand he made of me. Nobody had told me before that I didn’t necessarily have to be a statistic. They just said, “Statistically ...“ I walked out of the office that day somewhat in charge of my own destiny because it changed the way I thought.

I had heard “statistic” before but others had said it and it came out in the context of hopelessness regardless of what they meant. His words gave me hope. He was telling me that I didn’t have to die. There is a great deal of difference. He had demanded that I not pay attention to those statistics.

I believed him. This was a turning point for me. Though his words were not the same, I saw in him some of the same ideas that I heard from Bernie Siegel, as I listened to his tape, “Peace, Love, and Healing”.

Dr. Siegel opened his tape with a change from his title – to “Love, Joy and Optimism”. He said that exceptional patients have stories to tell and lessons to teach. After I thought about Dr. Siegel’s statement, I felt Dr. Kim was open to learning from a patient. I didn’t presume that I had anything to teach him but I found him to be open and thoughtful.

The scan did not reveal any cancer cells other than in the liver – which meant that Dr. Kim could proceed with the operation. As soon as he was able to put his team together, which included bringing in a specialist from Los Angeles, he called me and told me we were ready to proceed and I checked into the hospital.

As it turned out, cryosurgery was not an option and Dr. Kim resected about twenty percent of the tumors. None of the other surgeons suggested such a possibility. I don’t know what I would have done if it were not for Dr. Kim because he gave me both hope and time to fight the battle.

I learned there is a great difference from one doctor to another. I found Dr. Kim akin to the authors I had read or listened to on tape. I was lucky! So many aren’t. When our life is at stake, we must search for the doctor who says, “I’ve studied your situation. I have consulted with other doctors and we believe there is something we can do.”

I don’t know how much was divine intervention and how much was just plain good luck because I would not have located Benjamin Kim all by myself. Great doctors may be listed in the Yellow Pages but the real problem is knowing who is going to be great.

THE SECOND MEMBER

The operation was over and I lay in the bed, probably not the most coherent from medication. John Conlee enters the picture. I remembered my last hospital stint, and I decided when a person is terminal, the prognosis fatal, they send a social worker to see you.

A social worker has a difficult mission because it is sort of ongoing as they try to prepare you for dying but maintaining the best quality of life possible. John asked me what I knew about alternatives such as meditation and visualization.

I had tried some meditation but it wasn't an easy thing. It was difficult to slow my mind down and concentrate on nothing but the running brook in the forest. John recorded a meditation tape for me. He didn’t make a copy of a commercial recording. It was his protocol.

I had also read about visualization. It was in a book by Rev. Norman Vincent Peale that explained it simply. I would say that it is planning how you are going to accomplish a goal. Conceive and plan. Put a plan in motion and see it through, not only in your mind's eye but also through hard work. That is visualization. I had experience with that. I just had never thought about it in that way. In later years, I would say, “Develop an agenda.”

John asked me my thoughts about the subject and I probably spent the next several minutes rambling on about visualization suggesting that it needs to be brought forward to the computer age and made into a computer game. I probably didn't know what I was talking about. It may have been the medication speaking.

John didn't say, "I don't think that will work. We need to follow the old ideas about meditation and visualization. They have been tested and proven." Instead, he listened to the entire bit and he said it was a great idea -- the best he ever heard.

He appeared excited about it and I knew he was the second member of my team. It was important for me to associate myself with medical positivists. (I’m not sure there is such a word). I believed that I would be able to count on him to help me in a recovery process.

Shortly after John left, Dr. Kim came into my room. I told him about my conversation with John. As he thought for a few moments, he pawed the ceiling with his eyes thinking about what I had said. He, too, affirmed it was a good idea and suggested it may provide communications between doctor and patient. He said he would like to work with me on the project. His comments somewhat surprised me. It was reaffirmation of my belief that he was different.

Dr. Kim and John Conlee were both optimistic individuals and I was convinced it was critical for a cancer patient to have all the positive feed back possible. Much of what I accomplished would not have been possible without them.

John provided me with help in obtaining scan information, tracings, articles, etc. Our visits were not only been beneficial and uplifting but educational as well.

We have some choices when we decide who our doctor will be. Sometimes, we may not make the best choice. The same applies to our surgeon. Then, it begins to get a little murky and we begin to lose the opportunity to make choices. The surgeon often recommends the oncologist and, in our frame of mind, we don’t question him. His recommendation is almost written in stone though he may not intend it to be.

Everybody needs to be sustained by others in addition to the support we have at home. John became an advocate for me. He helped me achieve goals I could not have achieved otherwise. In almost all cases, the Medical Social Worker in a hospital has a very short term relationship with their patients. They enter the picture, do their job, and they are gone. I asked John how many patients he has that he has maintained on an ongoing relationship. His answer was, “Two”. A Medical Social Worker can be very, very beneficial.

We lay in a hospital bed after surgery. The prognosis is grim. A social worker is assigned to visit us. There may be twenty social workers in the hospital. At this point, there needs to be a lot of luck because social workers are not all the same as doctors are not all the same. The right social worker can assist us in our journey, not just try to improve the quality of our life. John Conlee helped save my life.

THE ONCOLOGIST

Dr. Kim said he would have an oncologist come by to see me. My first experience with an oncologist was not something I was very impressed with. An oncologist was not someone I looked forward to seeing. It seemed to me an oncologist is the last doctor you see before you die. I expressed to Dr. Kim, “If you are going to send me an oncologist I want the best one in the hospital.”

Dr. Saundra Buys came into the room and introduced herself. She probably had a number of patients to see because she appeared to be in a hurry and it was evident she would not be staying long. She was all business. Not much like me because, when things are bad, I want to talk. I don't necessarily want to talk about the bad things but, at least, talk. I don't think she was interested in small talk and I don't think I was ready for heavy stuff.

Dr. Buys recommended participating in a study. I was not ready to make a decision about something of that nature quite yet. I had been working on instinct up until that time and I wasn’t ready for any study. She told me to consider it and she would return later.

It took about two or three weeks before I made my decision. I told Dr. Kim that I would make an appointment with Dr. Buys and begin the

Capecitabine Study

study. He told me that when I had seen her earlier I had not given her a chance to speak, which is probably true. I told him, "It was my life and I needed to talk and she said she was busy and didn't have much time." He was certainly reprimanding me. I'm not a good patient. The hospital records, representing my first surgery, reported I was "difficult", and that is fine because I later learned that difficult patients are often those who survive.

When I saw Dr. Buys, I passed on my conversation with Dr. Kim. She was clearly upset that he had said anything to me and expressed the feeling of betrayal. I felt that I had not gotten off to a good start. I told her that she shouldn't be upset. I had asked Dr. Kim for the best oncologist in the hospital and he had sent her to me. At least, when it came to the study, she didn’t turn me down.

The purpose of the research was to determine the difference between a Phase III Study comparing an investigational drug, which I will refer to hereafter as “ID”, with 5FU/LV as first-line chemotherapy in patients with advanced and/or metastatic colorectal carcinoma.” It was to involve about 604 patients nationwide with approximately ten patients to be enrolled at University Hospital. Half were to receive ID and half to receive the standard treatment, 5-FU/LV.

I assumed that I would receive the ID when I agreed to participate. Fifty percent odds were better than what I had heard about my odds of survival, which I believed to be zero to two percent. I had faith. The idea of not receiving ID never entered my mind.

Dixie Grimstad, the coordinator, was responsible for contacting the laboratory and the computer went to work. It was, perhaps, forty five minutes later when she returned. There was no question in my mind what the results were. Another day, another hour, I may have not received ID. I was lucky.

I began treatment on April 8, 1997. I noticed tiredness within two days and it has continued off and on ever since. I began a diary beginning with treatment and I maintain it daily for anything of consequence.

I did not get sick. I did not lose my hair. Sometimes, I would get desperately tired but that was no different than other patients. There were other side effects but I could live with them.

In addition to ID, there was continued prayer, the listening of gospel music before going to sleep, support of friends, some meditation, being concerned about diet but not following advice of others too much, walking, and visualization. In my thinking, visualization was critical!

My first scan was May 16th, 1997. I waited in a small, windowless waiting room, like most of them seem to be, for Dr. Buys. She reviewed the film before coming to see me. She sat down beside me and beamed, “It’s nothing short of remarkable!” She also added that she had not seen as much reduction in cancer during her entire practice.

How much credit should go to each one of the various approaches? Dr. Buys said, "We don't know. Just consider it all of the above." I believe my visualization program did more to reinforce my mind, and allow me to reverse feelings from depressed to hopeful than any other thing. I could be depressed one minute and optimistic very soon.

That day, as we stood in the hall amongst doctors, nurses and patients, I gave Dr. Buys a hug. She was startled. I told her I had read a book and it said, "Hug your doctor". I consider this is significant because I am not just seeing my oncologist any longer. I am seeing a friend.

My team was complete: The Creator, the surgeon, the oncologist, the clinical trial, the medical social worker, a coordinator, and an angel who has been gone from this earth for nearly a century, family and friends as they held me in the light.

WHERE HAVE ALL OUR FRIENDS GONE?

I was seventy-one years old when I first wrote my thoughts about cancer. People have darted in and out of my life for most of the time. Some faces I remember. Some names I remember. Today, I wouldn't be able to put some names with the proper face. It's been too long.

Memories fade. They're embellished. I see the silly grin of a friend come to mind and now he has passed on. I don't see him any longer, only in my thoughts. It's not possible to tell him any more what he meant to me.

There were military friends. There were good buddies in the service but they went their way and I went mine. Where are they now? Where have all our friends gone? Some left this life. Others still live. They darted in and then they were gone.

As I stood on that busy interstate on Good Friday, I pleaded, "Please, not this way!" I needed time, for one thing, to tell people what they had meant to me ‑‑ perhaps, how they had changed my life. Perhaps, how they may have helped me chase a dream.

People are difficult to locate if we return in time after some thirty or forty or fifty years but, I felt, if they had meant something to me at one time, if they had influenced my life in any way, it was important to tell them. It would be part of my getting well strategy. I expected that speaking with those of times past would make my day.

I couldn't afford to waste time and so I began with those who I knew where they were presently living. I picked up a phone book. I called. I told them that I had cancer and that it was important to me that they know they had been significant in my life.

These calls to old friends were not for the purpose of talking about cancer. Very little of this subject was discussed. The idea was to tell them they had made a difference in my life. I tried to seek out old friends on a regular basis. Every call was a surprise. Every experience -- unique.

The outreach from friends is powerful, whether verbal, letters, cards or e‑mail. I never was too good at minding my own business and the son of one of our old friends came to see me during those first days, when the prognosis was bleak and I wasn’t favored with much longevity. He told me that if it hadn’t been for me his parents would have been divorced. Another called and told me that when he was going through a divorce, I had buoyed him up when he was so low. Friends telling me what I meant to them also lifted me up.

I am no more than a twig in a forest. People of prominence do not know me. Yet, I received two letters from Senator Edward M. Kennedy encouraging me. (A friend had apparently given him my name) He was one of the most important politicians in the United States and he took the time to personally write me. This was not only a surprise but it made me feel good. It’s part of the prayer idea of holding a person in the light.

I reached out to friends and they also reached out to me. Good thoughts and affection from others is mighty fine medicine.

As I thought about cancer, I had been handed a challenge that was well worth the fight.

DIET

Though my successes had been unbelievable, I may have failed in some areas in this cancer struggle. Diet was the most confusing. After my initial surgery, my son, Dorian, began studying what diet would be the most helpful. Actually, he was searching for a diet that would cure the disease.

By the time I came home from the hospital, he had studied Macrobiotics and was learning to cook some of their recipes which are based on grains, vegetables, beans, sea vegetables, etc. I spoke with one cancer patient who claimed her liver cancer had been under control for about ten years by staying on that diet, and I don’t doubt her, but I didn’t like it and I gave it up. The problem may have been the cooking but the fact was that I was distressed just thinking about my next meal. It’s like when I was young, trying to sell insurance and I didn’t want to go to bed because I couldn’t stand the thought of having to get up the next day and look for prospective buyers.

During the first three or four months, I took a lot of vitamins and supplements. My next scan revealed my tumors had grown four times the previous scan. I read some articles which indicated that some vitamins increase the growth of tumors. After studying the issue, I decided not to take any more vitamins. It seemed to me that when we become a cancer patient, one of our first thoughts is diet, vitamins and supplements, etc, and I wondered if cancer deaths are increased as a result of feeding the tumors.

As I thought about that, and as time went on, I sort of concluded I didn’t want to have my blood too healthy. I thought, the healthier the blood, the more the cancer cells could feast. I also thought there has to be a difference between a prevention diet and a cure diet. I will have to look at my diet relative to prevention after the cancer is gone. I talked with a spokesman at one of the major vitamin and supplement manufacturers. He said all the companies were involved with prevention and had done very little research regarding people who were undergoing chemotherapy.

The American Institute for Cancer Research publishes a newsletter on Diet, Nutrition and Cancer that makes recommendations about what we should eat. I usually try to use good judgment about the food. I have not been fanatic about it.

Consequently, I have tried to eat healthy but not too healthy. I hadn’t eaten much red meat for a couple of years before I learned of my cancer. I have somewhat leaned toward a vegetarian diet. Though it’s not the usual, I have been known to have a peanut butter sandwich or crackers and milk for breakfast. I sometimes sneak ice cream -- not the diet kind but the Baskin Robbins kind. I watch the blood tests to see that everything is within reason. I don’t expect everything to be normal with what I am going through. I have sort of a faith diet.

It was important that I not lose weight because that would be synonymous with failure. I ate to gain weight and I have gained more than forty pounds.

For a short while, I drank Essiac tea. It’s history goes back to 1922 when a nurse in Canada began giving it to terminal cancer patients. It has been in use ever since. I like tea and Essiac tasted fine. However, it has to be made up in advance and I was too lazy to do that.

I think it is interesting to note that after beginning my medication I did not have the flu, stomach sickness, etc., for about thirty months until the family brought it home to me. I had colds which resulted in a runny nose. I had bad headaches from time to time. My hands and feet were tender from dryness. I got extremely tired. Some of the tiredness may have been caused from poor diet, some from the medication and some from poor sleep. None of them can take all the credit. I think cancer patients, sometimes, just get dead tired and can hardly move. At a time like that, I would sit in front of the television and fall asleep. I still fall asleep sometimes when I ….

Lots of times, I was unsteady on my feet. I wondered if people thought I may be intoxicated. I thought it was probably the effects of Capecitabine. I also reached for words and that was frustrating.

Perhaps, if I had been more conscientious about diet and supplements my tumors would have been gone sooner than they were. I just don’t know. The idea of not feeding the tumors made sense to me. The diet I was most faithful to was faith, mind and spirit.

DENIAL

Ask strangers soft questions and start conversations.

I took the position that I would not deny the existence of my cancer nor my colostomy. Bernie Siegel said that if someone asks us how we are that we should not say we’re alright if we are not. We should not deny our cancer. He also said, “Share your needs. Reach out for help and express yourself.”

Today when someone asks how I am, I reply, “I’m perpendicular and that’s not bad.”

Ask strangers soft questions and start conversations. I would talk to people who I didn’t know. I told them I had cancer and I didn’t tell them because I wanted sympathy. I wanted them to know that if they got cancer, or a family member or friend got cancer, that when it comes to how to treat it, get second or third or fourth opinions, if necessary. Find the best hospital and the best doctor. We must surround our self with people of hope. I would tell some of them what I have done and I offered to share my thoughts with them. It is important for us to take charge and be a part of making decisions. I told doctors and others that I would speak to anyone who would like to talk about possibilities.

We were in Iowa and there was a recreational vehicle with Utah plates. I asked them where they lived and it turned out it was about twenty five miles from our home. He was sitting on the picnic table smoking a cigarette and his wife was standing near him. I suspect he may have been in his mid thirties. It turned out we had a common acquaintance. Small world. I visited a couple of moments and then I said, "I have cancer. They said I would die last year. I don’t know why I have it. My cancer is in my liver and unless you quit smoking you may develop it in your lungs. Either one can kill us." I may have offended him but he didn’t let on if I did. His wife said, “What a coincidence because not two minutes earlier I had been thinking that we must quit smoking.” She stepped forward, shook my hand and told me this may be the incentive they need. As I thought about this incident, perhaps, I thought I ought to have been embarrassed for what I had said.

I heard Art Linkletter say his best interviews are with children under six years of age and people over sixty-five because children say the first thing that comes into their mind and those over sixty-five don’t care what they say.

A long time ago, my father-in-law said an old man can say anything he wants. I say, an old man with cancer has an obligation to say what he believes might help others.

STROKING A DREAM

“Every individual forms his own estimate of himself and that basic estimate goes far toward determining what he becomes. You can do no more than you believe you can. You can be no more than you believe you are. Belief stimulates power within yourself. Have faith in faith. Don’t be afraid to trust in faith.”

Norman Vincent Peale

If you think you are beaten you are;

If you think you dare not, you don’t;

If you want to win but think you can’t

It’s almost a cinch you won’t.

If you think you’ll lose you’re lost;

For out in the world we find

Success begins with a fellow’s will;

It’s all in the state of mind.

Life’s battles don’t always go

To the stronger and faster man,

But sooner or later the man who wins

Is the man who thinks he can.

Copied

In late 1958 and early 1959, I dreamed about organizing a private military theater that would primarily provide inexpensive movies to members of the National Guard, Reserves and Active Duty. I could see, in my mind, a theater with all the seats filled.

I went about doing the leg work. I had no theater experience and so I called on experts about equipment, installation, what types of film we would be able to rent, what costs would be, etc. Not only did they give me advice, some actually helped me. There was a passion about it all. The magic word – ASK!

I decided we could probably open for nine ($9.00) dollars per year for 104 shows. The cost would give an entire family the privilege of attending as many, or as few, movies as they wanted at no additional cost. We would have 577 seats, and because it would be so inexpensive, and we would have good movies repeating twice a night. I envisioned 1,000 people coming through the doors. They would buy popcorn, support the concessions and that would support the theater.

We scheduled the first movie for the evening of May 9, 1959. I shall never forget it because it was a total failure. I stood before those first-comers and said, “I’m sorry. We have no sound. Please give me another chance.” The seats were not filled that night, thank goodness. They were mostly faithful friends and co-workers who supported my efforts.

I kept stroking my dream and everything worked the following scheduled night. The dream didn’t all come together at one time. I appreciated everyone who walked through the doors on those movie nights. They were my guests and they swelled my ego. Eventually, there were more than the imagined 1,000 people attending during a single night, filling the theater to capacity, just as I had seen them in my mind sometime earlier.

I dreamed about publishing a trade newspaper and it was successful although it was short lived. I dreamed about producing a radio show. I had never done anything like it before. I asked for help. Ask and you shall receive -- we have all been trained to say yes. The programs were on between fifty and one hundred stations. First, I visualized -- I made the effort -- and then made it happen.

I began planning how to achieve a dream, seeing it in my mind, and chasing it to fruition. That is visualization. I practiced visualization as part of my cancer battle. I saw my liver and the lesions on the computer, and paper, sufficient times that I could also see it in my mind.

Norman Vincent Peale is an excellent place to learn about visualization. From his book, “Powerful Imaging” he wrote the following:

“There is a powerful and mysterious force in human nature that is capable of bringing about dramatic improvement in our lives. It is a kind of mental engineering that works best when supported by a strong religious faith. It’s not difficult to practice; anyone can do it. Recently it has caught the attention of doctors, psychologists, and thinkers everywhere, and a new word has been coined to describe it. That word is imaging, derived from imagination.

Imaging, the forming of mental pictures or images, is based on the principle that there is a deep tendency in human nature to ultimately become precisely like that which we imagine or image ourselves as being. An image formed and held tenaciously in the conscious mind will pass presently, by a process of mental osmosis, into the unconscious, the individual will strongly tend to have it, for then it has you. So powerful is the imaging effect on thought and performance that a long-held visualization of an objective or goal can become determinative. Imaging is positive thinking carried one step further. In imaging, one does not merely think about a hoped-for goal; one “sees” or visualizes it with tremendous intensity, reinforced by prayer.

Imaging is a kind of laser beam of the imagination, a shaft of mental energy in which the desired goal or outcome is pictured so vividly by the conscious mind that the unconscious mind accepts it and is activated by it. This releases powerful internal forces that can bring about astonishing changes in the life of the person who is doing the imaging.”

I believed visualization may be easy for one person and difficult for another. I felt that if I could combine sight and facts with goals it would go a long way toward effective visualization for me. I could see my liver and my tumors in my mind. Sometimes, the sight of it came to me involuntarily and I might use a finger to erase the tumor from my mind just as my autistic grandson might be inclined to do. I could see my liver and the tumors when I spoke with someone about my cancer. If I got “down” I could imagine and visualize and it buoyed me up.

ILLUSTRATION OF LIVER

Imaging and Visualization

Part 1

I obtained film copies of my scans and transferred them to my computer through the use of the Photoshop program.

The slides were then transferred to my computer. There are many things I could do once they were on the computer. It was easy to imagine that it was a computer game and I could erase the tumors from my liver with the mouse.

Sometimes, I would print a copy of the liver and tumors on paper and work to erase them. Sometimes, I used a razor blade to scratch the tumor from the surface of the paper taking care to not dig a hole through the paper.

The following two pictures represent four slices of the liver as filmed on February 25 and November 7, 1997. These formed the basis of my computer game.

Lakeview Hospital, February 25, 1997

University Hospital, November 7, 1997

Part 2

The second part of the process dealt with tracings. The radiologist measured the largest lesion across two ways. They may specify there is no change from one scan to the next, when, in reality, there was a change. I was able to look at tracings all through the liver and see that some had actually reduced. I was able to turn a radiologist report from “No Change” to “Progress”.

I had a better picture of how much cancer was actually in my liver by using tracings.

Tracing, April 3, 1997

Tracing, November 7, 1997

Part 3

In April of 1997, the total mass for the lesions was about 7,028 millimeters. In November, 1998, nineteen months later, it was about 780 millimeters. In other words, the total mass had reduced about eighty-nine percent during this period of time. The total mass of the tumors had reduced more than ninety percent. This information was based upon the tracings.

Total Lesions

Date	Total Mass	Change from Last Report	Total Change
Feb 25, 1997	4893
Apr 3, 1997	7028
May 16, 1997	3048	Down 56.6%	Down 56.6%
Jun 27, 1997	2157	Down 29.2%	Down 69.3%
Aug 15, 1997	1625	Down 24.7%	Down 76.9%
Sep 26, 1997	1528	Down 6.0%	Down 78.3%
Nov 7, 1997	1377	Down 9.9%	Down 80.4%
Jan 2, 1998	1377	Down 0.0%	Down 80.4%
Apr 2, 1998	1377	Down 0.0%	Down 80.4%
Aug 11, 1998	1300	Down 5.6%	Down 81.5%
Nov 13, 1998	780	Down 40 %	Down 88.9%
Feb 12, 1999	591	Down 24.2%	Down 91.6%

TRACING HISTORY

The Tracings were made as each scan was filmed.

Date	Slices	Lesions	Total Lesions	Value	Change (Down)
4/3/97	11	9	16	788
5/16/97	12	9	14	280	64.5%
6/27/97	10	8	13	238	69.8%
8/15/97	11	7	12	218	72.3%
9/26/97	11	7	10	94	88.1%
11/7/97	14	7	8	75	90.5%
1/2/98	22	9	10	71	91.0%
4/2/98	21	7	9	77	90.3%
8/11/98	21	7	7	55	93.0%
11/13/98	20	5	6	37	95.3%
2/12/99	20	4	4	17	97.8%
11/9/99	12	1	1	11	98.9%

SOME THOUGHTS

The Clinical trial was designed to determine the difference between the trial pharmaceutical and the standard treatment, 5-FU/LV. It was good to me. Is this medication totally responsible for the reduction in my cancer? I don’t know but I don’t think so.

The preliminary results of the study indicated there were 1,210 patients world wide with 535 patients from the United States. The medication was divided equally -- 269 received the standard treatment, 5FU/LV. Of those who received the trial medication, sixty percent were male and seventy-seven percent were liver and lung patients.

The medication was taken orally and there were fewer side effects noted. The only increase in side effects were what they called the hand-foot syndrome. My hands and feet were dried, cracked, swelled some and uncomfortable. Two percent of the patients, in other words, about twenty-five, withdrew from the study due to this problem. I looked at my hands and feet as a badge of determination.

The preliminary result revealed there was no difference in time of progression and survival for the patients. There was no difference between the trial medication and standard treatment. The two were equivalent with each other. The time of survival for those in the study was 12.5 months. I began the study on April 8^th, 1997. If I had fit the norm, I would not have survived beyond May, 1998. Not only have I outlived the original prognosis given by three doctors, and exceeded the average patient in the study but my tumors were diminished by more than ninety (90%) percent, perhaps, as much as ninety-eight (98%) percent depending on what set of numbers are used.

Did the medication work differently in me than other patients? I was unable to prove it one way or the other but I believed it was more likely my use of three fronts in my attack: surgery (actually, double surgery), the clinical trial, and the implementation of my own program and passion. It’s like the three legged stool Dr. Benson spoke about. I was one of those legs.

It was an accident to some degree, or stubbornness, that I did not listen to the first doctor, or the second doctor, or the third doctor. I listened to my instincts. If I had begun treatment as advised by the first oncologist I would not be here today. I believe that. I suspect many studies probably want to start with a patient who has no previous medication. I studied my options before I committed to any treatment even though doctors would say I took too long. I think it is very important to use the Magic Word again and again. Ask!

What I have tried to do is suggest life is worth fighting for. There is a preponderance of evidence which supports the fact that the Mind-Body Connection is real. I could not quit because I was dealt a bad hand. Those first doctors said I couldn’t beat it. It took some time for me to begin to fight back because I didn’t know where to begin.

According to Deepak Chopra, there is a cooperation between the mind and body at the cellular level. He says the cells in our body are in a continual state of change, even with every breath. We replace ninety (90%) percent of our cells each year. My objective was to replace the cancer cells. I was told cancer cells are weaker than healthy cells.

It was not easy. I told the doctor that if I make it through this cancer I will probably be a better person for it. If I don’t, I’ll be damn mad. The doctors said I couldn’t live with a metastasis from the colon to the liver with the major tumor sitting on the blood supply where it feeds. However, they couldn’t tell me when I will die. I wouldn’t listen to them. The challenge to prove them wrong remained ahead of me. Even though I was about ninety-eight percent finished with the race, I knew I could still stumble and if I did, I knew I must get up.

I sometimes called others when I learned they had cancer. I sent my story to them hoping there would be something in it for them but somewhat anxious because I didn’t want to mislead them about diet, or not taking vitamins, etc. I used the Magic Word whenever I was able. I asked others to use it.

I couldn’t get rid of the cancer all by myself. I had an exceptional team helping me. First, perhaps, there must be a reaching out. After the good fortune of locating Dr. Kim, the rest of the team fell into place as the need arose.

I was always grateful. And blest. And very, very lucky. There were many who I credited for my success. Which of my ideas helped supplement the medicine? I don’t know but, perhaps, each idea added to the mix helped a little and a lot of “littles” help a lot. I am certain there were other things that came along and I added them to the mix.

John Conlee examined three adult males who were in varying stages of remission of cancer. I was one of the participants. There were common threads of both thought and action between the three of us. The following three paragraphs were extracted from John’s study.

“One of the strongest similarities across all three patients was the overarching goal to beat the cancer. Goals were expressed to be ‘cancer free’, ‘get the tumor out of my head’, and to ‘kick the hell out of my disease’.

On the surface, the greatest dissimilarity across the three cancer survivors appeared to be the evidence used to assess goal-attainment. Objective medical evidence was used by one, whereas internal feeling states were used by the other two. It is possible that the individual who relied upon objective evidence also relied on kinesthetic feelings using a V-K strategy. However, the two who relied solely on their feelings appeared to give primacy to those alone, even when objective medical evidence was yielding unfavorable results.

All three cancer survivors emphasized the importance of both asking for help and adopting a willingness to receive that help. They all put faith in God, as well as the physicians who were treating them. They prayed for others who were sick, and gratefully received the prayers from many who did not know them through prayer lists. None of these individuals were idled very long by their disease and stayed as active as possible throughout much of their treatment. All three emphasized the use of belief and practiced faith, through both prayer and belief in treatment. They believed in their ability to survive and appeared genuinely optimistic about their survival. The three were not equally religious or spiritual prior to cancer onset. One patient re-kindled religious beliefs left dormant since high school. He healed a conflict with his father who had requested that his son ask Jesus for help, and it was at that point that he started to accept prayers from others.”

I want to include some words which were placed on my desk one day. I don’t know who left them for me. There have been many poems that would be appropriate but none may better fit the situation.

THE RACE

by D. H. Groberg

Quit! Give Up! You’re Beaten!

They shout at me and plead

There’s just too much against you now

This time you can’t succeed.

But as I start to hang my head in front of failure’s face,

My downward fall is broken by the memory of a race.

And hope refills my weakened will as I recall that scene,

For just the thought of that short race,

Rejuvenates my being.

A children’s race, young boys, young men now, I remember well,

Excitement, sure! But also fear, it wasn’t hard to tell.

They all lined up so full of hope, each thought to win that race,

Or, tie for first, or if not that, at least take second place.

And fathers watched from off the side each cheering for his son.

The whistle blew, and off they went, young hearts and hopes afire.

To win, to be the hero there was each young boy’s desire.

And one boy in particular, whose dad was in the crowd,

Was running near the lead and thought: “My dad will be so proud!”

But as they speeded down the field across a shallow dip,

The first little boy, who thought to win, lost his step, and slipped.

Trying hard to catch himself, his hands flew out to brace

And ‘mid the laughter of the crowd, he fell flat on his face.

So, down he fell, and with him hope – he couldn’t win it now –

Embarrassed, sad, he only wished to disappear somehow.

But as he fell, his dad stood up, and showed his anxious face,

Which to the boy so clearly said: “Get up and win the race.”

He quickly rose, no damage done – behind a bit, that’s all –

And ran with all his mind and might to make up for his fall.

So anxious to restore himself – to catch up and to win –

His mind went faster than his legs; he slipped and fell again!

He wished, then he had quit before with only one disgrace.

“I’m hopeless as a runner now; I shouldn’t try to race.”

But, in the laughing crowd he searched, and found his father’s face

That steady look that said again, “Get up and win the race.”

So, up he jumped to try again – ten yards behind the last –

“If I’m to gain those yards,” he thought, “I’ve got to move real fast.”

Exceeding everything he had gained back eight or ten,

But trying so hard to catch the lead, he slipped and fell again!

Defeat! He lay there silently – a tear dropped from his eye –

“There is no sense in running more; three strikes, I’m out,

why try?”

The will to rise had disappeared, all hope had fled away

So far behind; so error prone, a loser all the way.

“I’ve lost, so what’s the use,” he thought, “I’ll live with my disgrace.”

But, then he thought about his dad, who, soon, he’d have to face.

“Get up!” an echo sounded low. “Get up, and take your place.

You were not meant for failure here, get up, and win the race.”

“With borrowed will get up,” it said, “You haven’t lost all.”

For winning is no more than this: to rise each time you fall.

So up he rose to run once more, and with a new commitment

He resolved that win or lose, at least he wouldn’t quit.

So far behind the others now – the most he’d ever been.

Still, he gave it all he had, and ran as though to win.

Three times he’d fallen stumbling, three times he’d rose again.

Too far behind to hope to win, he still ran to the end.

They cheered the winning runner, as he crossed the line first place,

Head high, and proud, and happy. No falling, no disgrace.

But when the fallen youngster crossed the finish line last place,

The crowd gave him the greater cheer for finishing the race.

And even though he came in last, with head bowed low, unproud,

You would have thought he won the race to listen to the crowd.

And to his dad, he sadly said, “I didn’t do so well.”

“To me, you won!” his father said.

“You rose each time you fell.”

And now when things seem dark and hard and difficult to face,

The memory of that little boy helps me in my race.

For all of life is like that race,

With ups and downs and all,

All you have to do to win is rise each time you fall.

Quit! Give Up! You’re beaten!

They still shout in my face,

But another voice within me says,

“Get up and win the race.”

THE MARGIE LEVINE STORY

A Medical Miracle

I was first introduced to Margie by my friend, Rita, whose brother was a mesothelioma cancer patient. She found Margie’s story on the Internet and sent it to me.

In 1989, Margie Levine, a health education teacher and social worker was given six months to live! At age 43, she was diagnosed with pleural mesothelioma caused from asbestos exposure. Three major medical centers confirmed her grim prognosis.

Margie was considered a medical miracle. Her case was studied at the Harvard Medical School and presented to doctors around the world. She was invited to be a guest speaker to 150 doctors in Boston along with the Nobel prize winner in cancer medicine.

We shared our ideas and the course we each took in our battle with cancer. She was determined to be free of cancer. At that point in time, I had only about two percent of the tumor remaining. We shared our common prognoses and strategies. They are:

We were both given no hope by the doctors.

The prognosis by our doctors resulted in both of us believing it was necessary to begin to prepare to die. We went about it differently.

We had feelings about being overwhelmed.

We were unprepared about how to begin to fight to survive.

The will to survive resulted in devising personal techniques as a supplement to medical protocol. This was done with full knowledge of the doctors.

We each lost a parent during the struggle -- she lost her mother and I lost my father.

We each called medical centers, cancer centers, friends, clergy and considered alternative options.

Neither of us stopped with second or third opinions.

We recognized that even in the best hospitals it is easy for errors to occur and we both opted for teaching hospitals near home.

We created our own visualization program.

We actively participated in the decision making process.

We used meditation but with different emphasis.

We accepted the gifts of prayers from others.

We emphasized spirituality and talking with others.

We both kept a diary but different in nature.

We believed it important to have a caring person attend doctor appointments with us during early days.

We both used a personal relaxation tape.

We believed in a higher power.

We used music as part of the healing process.

We reached out to family and friends.

We, in time, did not dwell on ourselves as our focus turned to other people.

We believed that giving to others is part of self healing.

We believed it was necessary to deflect and eliminate stress.

We listened to our inner voice and instincts.

We accepted what was offered from others.

We walked for exercise.

We read books of affirmations, inspirational thoughts and poetry.

We recognized forgiveness as a part of the healing process.

We used funny videos for humor.

Thoughts were positive, with resolve and perseverance.

There was a need to encourage other cancer patients. We had the idea that with success we must “give back”. We felt it was necessary to speak with other cancer patients to give them hope.

It seemed to me that the course that Margie Levine took, and her amazing results, affirms or validated some of my ideas -- that we can do something rather than give up.

Marjorie would pass away but inspired many.
THE FUTURE

I looked at my future in 1999 and I wondered …

Why have I survived while others have not? Tom Ehrich said he didn’t believe God sits in the heavenly realm deciding who is going to die today. Why I live is a mystery I do not understand. I cannot explain it. I only know that I am grateful. Sometime, during each day, I say, “Thank you for today, thank you for yesterday, and thank you for the anticipation of tomorrow.”

I was not convinced there is a purpose for what befalls us. It is part of life. I rather believe our character and the impact we have on others – good or bad – is shaped by how we deal with what befalls us – good or bad. The fact remains, I don’t know. I just have faith.

I placed a display ad in our local newspaper about my success fighting cancer and that I would like to meet with anyone who may be interested. I visited Dr. Freeman, the original surgeon, a couple of days before my advertised meeting. I had not seen him since my surgery which was about twenty-nine months earlier. He told me that in his entire practice of twenty-five years he had not seen anyone live as I had.

My doctors are my friends. I called Dr. Buys one day and she asked what she could do for me. I told her that I didn’t call for anything except to tell her she was a great lady. I called Dr. Kim to say again, “Thank you”. They, on a sustaining basis, as have many others, held me in the light. I must hold them in high esteem. I can do no less than honor them.

We all need heroes whether or not we have cancer. My heroes were my cousin, Gene, who led me to a surgeon that gave me a second chance and taught me that I didn’t necessarily have to be a statistic. My hero was my oncologist. Imagine, if you will, how difficult it must be to be an oncologist. I understand the odds of their patient surviving a far reaching metastasis to the liver is almost zero. I wonder if they begin their days reading the obituaries.

My hero was an unusual social worker who didn’t spend much time increasing my quality of life while I was waiting to die, though that was probably his original intent, but rather he spent his time helping me in ways he could not have conceived. My heroes were a coordinator and a researcher and a trial study even though it didn’t prove any more effective for many others than conventional treatment. The study was my hero, none the less. It was a hero for me because I believed in it but I supplemented my belief in it with the third leg. My heroes were my family and my friends. My heroes were all those who had good thoughts and “held me in the light” and I am thankful to each one.

They are still my heroes.

In this cancer journey of mine, I asked the soft questions and started conversations because, if I was speaking with another cancer patient, we could share ideas and actions which would help each other. I believed there was more than one way to win the race. There are different routes to the same destination. I’m not certain of all of my paths because there were many distractions.

I believed we must set goals, have faith in faith, have hope and believe in miracles and also believe that part of the miracle may rest in our own palm. We must also have love – love of God or the Divine, love of self and love for others. It should be the natural thing to do.

We are not taught how to survive cancer and that is a tragedy. They don’t teach us how to survive at the doctor’s office or at the hospital. They help us survive but they don’t normally teach us how to do it. They also don’t teach us how to survive at church or home or school. We must believe that death is our enemy if our goal is to live. We must believe that life is truly the greatest of all gifts and that it is a gift which should be treasured with the same intensity as we anticipate eternity.

Some say that it all ends with death. We cannot control what happens in the hereafter. I believe that if we believe there is life after death it affects, in a positive way, how we live our life each day. It is having faith in faith and can become part of the healing process.

They say in funeral lines, “Don’t be sad. He went to a better place.” People tend to say, “When the Lord calls, we should be happy because it is a far better place we are going!” If life is truly a Gift from the Creator, we should honor it and fight to sustain it. The time will come when a different decision may be made but the tragedy is that many agree to not get up and finish the race.

I was asked to make a list about what I had done because I was surviving while others were not. I expect to continue to revise and revisit my thoughts because it forces me to look at the outstanding words of Norman Vincent Peale and the others. When I was sort of down, I would read some of the pages and review the scans and tracings for encouragement. It never failed.

It may be that one of the most important things that I have learned was to learn that writing is therapeutic.

I believed that we must accept new ideas. More doctors were accepting some form of complementary medicine. Dr. Benson said the third leg in the process of healing is self care. We must take part in our own healing. I listened to the advice and counsel of the experts but, in the end, there were decisions which I had to make.

I felt … It requires more of me than just being positive if I want to live. I must be aggressively positive. It requires action with affirmative and optimistic thinking. Some of the action that I took was with the pictures of the tumors and tracings of the liver. I continued to keep them before me and was aggressive in my actions as I thought about them.

Cancer changes us. Earlier, I said that for me it has been a tearful disease. The tears were not necessarily often and certainly not in the open for people to see but they were not far away. I wondered if they would linger after the cancer is gone. It was also a spiritual journey and like the cast from the Wizard of Oz, I wanted to give to others.

During my lifetime, I have changed vocations and avocations several times. If vocation is represented by amount of thought and time spent, my new job is to tell others to not give up.

I cannot predict the future. I had the idea that I wanted to develop a computer game for cancer patients and, as a result, I invested $35,000 of borrowed money into a venture I thought would yield $100,000. I felt I needed that amount for programmers, artists, etc. Things didn’t work out and the money went south. However, I don’t look back because it was part of a magnificent dream that helped me along the road.

In 1999, I didn’t know what the tomorrows would bring. I thought that I would assume the role of the Tin Man and reach out to others with cancer. I thought I would continue to believe that death is my enemy. I believed that wherever I happen to be as I travel through life -- that is my home -- it is where I live. I am not troubled that my home is in the house of cancer.

I set my sights far ahead but I knew I must walk them one day at a time. I will remember that This Is The Day The Lord Has Made. I will remember Good Friday and The Magic Word. I will remember The Gift of Life.

The wind beneath my wings comes from on High.

POSTSCRIPT

Dear Reader,

If you are a cancer patient, we are traveling the same journey. One of my strategies has been to write my thoughts and actions, basically for two reasons. The first reason is a selfish one. I want to live. It has been part of my own self prescribed therapy.

I don’t know when the second reason began to develop. It sort of evolved from a firm conviction that imaging and visualization really works and that the idea of seeing my cancer on a continuing basis, both from scans and tracings, made imaging easier. I had never read that before.

What will follow are a lot of “I believes”. They are my ideas only.

I believe the will to live which lingers within me was intuitive. On December 30^th, 1996, I asked my son to pick up my check book and I would sign a check for a new computer. This was at a time when my family said I knew I had cancer. Even though I must have been overwhelmed about cancer, I wanted a new computer.

I began to believe the doctors when they told me that what has been happening to me was a miracle. I also believed that if it could happen to me, it could happen to others because we were all created the same way. We might be wired a little differently, that’s all.

Everything I wrote about has been important in my recovery, I think. It is for this reason there were four tables offered for your consideration.

Table 1, Lesion History. I believe we should know what our cancer looks like and how it evolves. Therefore, I keep both pictures and tracings because they tell a different story. The table is to maintain a record of the lesions.

Table 2, Prayer List. I don’t pray for God’s will to be done regarding the outcome of cancer because I assume it was His intent that we all live a full life. Therefore, I pray for complete recovery -- for life over death. I believe we should pray for others and that when we know others are praying for us, we ought to acknowledge it and thank them for it. They have honored us.

Table 3, Goals. I believe we need grand goals. I called mine Cadillac goals and not Compact goals. They should be both short and long term.

Table 4, “Where Have All My Friends Gone?” I believe we should reach out to old friends and thank them for having been a part of our life.

I know full well that many who are sharing this journey with me may not agree with anything I have suggested and some who may be inclined to agree may not follow through with any of my suggestions. We each must fight in our own way.

At some point in time, I had brain-washed myself believing that I knew some of what I was talking about, due to my progress, and it became important to share my ideas with others. I admit that I might be completely off base but what if I’m not? What if, just -- what if -- some of these strategies truly work?

I want to introduce you to Julie. Her aunt came to me about September 20^th and told me Julie had been operated on about three months earlier at University Hospital. Her liver was about eighty percent consumed with cancer. They closed her up, told her there was nothing they could do and sent her home.

I can just imagine that Julie didn’t know what to do. She must have been completely overwhelmed. Julie was thirty-four and I was sixty-eight and I was overwhelmed. Julie went home -- out to Skull Valley -- and I don’t know what she did about living but she didn’t see another doctor for three months, just before she came to my attention, and the cancer had spread.

I thought about Julie every day, prayed and “held her in the light”. Julie was born in 1964 and died October 28, 1999. She was thirty-four and pretty but most of all she was a wife and the mother of two small children. I think of her because she was so very young and it seems to me that she fell through the cracks. Hospitals and doctors sometimes make mistakes and things go wrong.

As soon as we learn of our cancer we must begin to save ourselves regardless of what the doctors told us. They are not always right. We must not give up hope.

I needed some computer equipment and went into a store where I have traded in the past. During my visit with the owner, I reminded him that it had been more than three years since I told him of my cancer and the short term prognosis. After a moment or two, he burst out laughing. It was sort of an uncontrollable soft laugh. As he gained his composure, he said his uncle had cancer and the doctors had given him six months. (There’s that six months again.) His uncle told the doctor that he’d better figure out a way to keep him alive longer than that because, if he didn’t, he wouldn’t pay him.

His laughing had pretty much subsided and I asked him how long it had been since that happened. His answer, “Four years and he’s still going strong!” The words may not be exact but they are close.

They say we need a good support base when we have cancer. I believe support is very important but where the support comes from is most critical and, in my opinion, it is not the place normally defined by doctors of cancer or cancer wellness houses or other cancer patients although it is addressed by all. It is not the support which comes from family or friends even though they are important.

The support most needed, I believe, comes from a well deep within us and that may be the crux of the problem. How do we change our personality to become tenacious and stubborn, or even defiant, if what we are is a congenial person who believes that whatever happens to us will be God’s will, or we have faith that the medical folks will do what they can and there is nothing else to do except follow orders.

Can we change the way we are wired?

I am often frustrated because I have sent the rough draft of this book to others with cancer and, for some who I have had some contact. I believe they relied too much on faith alone and too much on doctors alone without adding a plan of their own to the mix. I am not discounting the Faith Factor because I have suggested the importance of faith and spirit throughout.

I wonder though, if some of the agreeable people could modify their personality just a bit – find a support from within, accept that death is not acceptable – could more win the fight? I wonder.

I hope those fellow cancer patients who read this will find it worthwhile and inspire them with ideas which may provide hope for them. We should not agree to die.

Remember, the Magic Word is “Ask”. When you ask for a miracle for yourself, ask for one for another.

COMMENTS

Benjamin Kim, M.D., FACS, Utah Cancer Institute, LLC

Just finished reading your working copy -- it’s both provocative and inspiring. You are not alone -- maybe talking to some other patients will broaden and confirm your hunches.

Saundra S. Buys, M.D., Hematology and Medical Oncology, University of Utah Medical Center

It’s very powerful and will be an asset for many people. Thanks for letting me be a part of this miracle.

Richard A. Bloch, Bloch Cancer Institute, Kansas City, MO

Thank you for your manuscript, My Home is in The House of Cancer. I took it home last night and went over it and believe it can be most helpful to cancer patients. I particularly liked your first page, The Magic Word. I am placing your book in our library so cancer patients may have reference to it.

Susan Schulman, Project Coordinator, Huntsman Cancer Institute

I formally noted the existence of the Vandegrift hypothesis yesterday.

John Conlee, Ph.D., L.C.S.W.

When I first met Bob, he had been diagnosed with colon and liver cancer and was given a short time to live. This grim prognosis only seemed to fuel Bob’s spirit and inspire unshakable determination and commitment to beat the odds. I was just starting to use imagery with cancer patients when Bob devised a novel approach to visualization. Our collaboration comprised only one aspect of Bob’s compelling journey. His book provides a down-to-earth account of how one man did beat the odds.

Jan Freeman, MD, FACS

Hope you are still doing well -- it was great to read your story. I’m always happy to be wrong in these cases -- wish I could be wrong more often.

Margie Levine may be the longest survivor of pleural mesothelioma in the world. She is cancer free and heads up the Boston Institute of Noetic Science, an international education and research organization studying mind body health.

So much of what you did and how you feel remind me of what I did. We have so much in common. There is a part of healing that definitely comes from believing in your own wishes and strengths. It is going with your inner voice.

Bernie S. Siegel, M. D., Author of “How to Live Between Office Visits” and “Peace, Love & Healing”.

It’s too bad we have to learn the hard way -- but you surely have and are filled with wisdom. You are the talented athlete -- who with coaching does get up and win the race. I am less concerned about the accuracy of your words than the truth of your message.

Marcella L. Keck, Attorney and Cancer Patient

I wanted to let you know how much I enjoyed your book. I have been reading many things, including Bernie Siegel’s “Love, Medicine, and Miracles” and Rachel Remen’s “Kitchen Table Wisdom”. I had begun my spiritual journey some time ago, but felt that I wanted to go the next step further. So much in your book was affirming to me -- seeing in print conclusions I had reached and feelings I had. I read it over the holidays. It was a perfect gift for me.

Earlier this fall, a friend who is a recovering alcoholic told me that I would be bombarded with advice about healing as she had been bombarded with advice about sobriety. She, too, gave advice: Take what feels right and leave what doesn’t. Your book does the same thing. It affirms each person’s choice of path, but stresses the importance of a path. It seems to me that your diagnosis encouraged you to rally to life.

I was invited to give a talk at the Intermountain Health Care Cancer Conference in Sandy, Utah on September 29,l 2005. The audience consisted of oncologists, nurses, medical social workers, cancer patients and survivors.

There were about two hundred in attendance.

And so -- this is what I told them:

choose to live

I have six thoughts as an overview.

Cancer is scary … especially when they tell us it is terminal.

We should not make an immediate decision about treatment.

We need a mentor and develop a plan to supplement medical treatment.

We must find a way to jump start our belief system … and hope system ... when ever the dip stick is low.

We must believe we are entitled … and choose to live.

Some of whether or not we live is up to us.

In December, 1996, during surgery, it was found that I had Stage IV colon cancer … with metastasis to both lobes of the liver. When I began my journey with cancer … cure was not in the mind of the first three doctor: the surgeon … the oncologist … and another highly respected surgeon who gave a second opinion. Actually, not one of five doctors expected me to survive.

They would eventually say that my recovery stood out as a medical mystery. They said, “There are always going to be a few patients that respond exceptionally well, for reasons that we don’t understand”.

I like to believe this is a day bent toward the proposition that our heroes are divinely inspired. If our doctors are not our heroes we must find those who are.

I believe we need a team who are our medical heroes including a surgeon, oncologist, nurses and mentor.

Our relationship with our doctors is significant. They are the experts and, too often, they give us no hope. They also, too often, give the family … no hope … and it is contagious.

This is not to suggest there aren’t great doctors who mentor their patients but they are too few and far between.

A doctor … when he gives a terminal prognosis … has no idea about what a patient may have been going through … or thinking about … and how their words and behavior may adversely affect the outcome for the patient.

I was once asked to write an article for a magazine about surviving cancer. One of their requirements was that the word “dying” or “death” could not be used. I said … I couldn’t do it. I had to use those words because those are the words we hear.

We can’t allow the first prognosis to rob us of hope.

In 1942, Winston Churchill was invited to speak at a commencement in England. He repeated three words. Eleven letters. “Nev-ah, nev-ah, nev-ah, nev-ah give up.”

Ben Stein said, “The first step to getting the thing you want out of life is this: Decide what you want.”

Senator Claude Pepper said, “You don’t fall off a bicycle unless you stop pedaling”.

You don’t lose the race unless you don’t get up when you stumble.

I was told that statistically I had six months to two years to live. My family was told I had four to six months … closer to four.

No sooner had the doctor hurried out of the room but a nurse and social worker came in. The social worker said, “Mr. Vandegrift, are you afraid of death?”

I was sent to … an oncologist … and she affirmed that I was going to die. She said that I cold only survive for a short while … with chemotherapy … but I was still going to die.

I was sent for a second opinion and I was told to get my affairs in order because I had only four months to live.

Because of this history, I sometimes wonder, “Why me?” Not why did I get cancer but why am I still perpendicular.

I want to tell you what I did … and talk about strategies and possibilities that I have shared with others.

I focused on hospitals: M. D. Anderson in Houston, a hospital in San Diego and the University of Utah.

I sent a copy of my records to my cousin who is a surgeon. After he studied them, he thought the only chance I had was cryosurgery and he told me he would see if he could locate a surgeon for me. He discovered one at the University of Utah hospital.

When Dr. Benjamin Kim operated … cryosurgery was not an option and they were unable to complete successful surgery.

My decision at the time of the first surgery was that I would not see the oncologist in the hospital. We are asked to see them when we are the most fragile and vulnerable. However, after the second surgery, Dr. Saundra Buys came to see me. She asked me to take part in a clinical trial. It took me about three weeks before I said I would do it.

When we are in the hospital, and the prognosis is bleak, they often send a medical social worker to see us. They sent John Conlee to my room. He became my mentor. All medical social workers are not mentors. We need a mentor and many cancer patients don’t have one.

It was my first visit after the second surgery when Dlr. Kim asked me how I had been. I carried a small book with me which was published by the American Cancer Society. One page portrayed a chart outlining the steps from the beginning of cancer to the end. I told him that … I was on the last … or next to last … step.

One of the most important things I ever learned …. was what I took from his response … because it changed my life and affected how I would deal with cancer. He said: “You may be on the eleventh or twelfth step … but throw that book away. Some of whether or not you survive … is up to you!”

I thought he was telling me that I need to devise a plan to succeed.

I participated in a world-wide clinical trial. There were about 1,210 patients on the study. The drug was known as Capecitabine. After the trial period it became known as Xeloda.

Had I made an immediate decision about treatment … I could not have participated in the clinical trial.

I used visualization. I placed copies of my CT-scans on my computer. I would erase the lesions from the liver each day … several times a day … until I could see them in my mind’s eye … even when doing other thing and not thinking about cancer. I knew what my liver … and tumors … looked like.

I also placed photographs of my liver … with tumors … in a big frame and hung them on my wall in my office so I could look at them … think about them … and wish them gone.

We traced the outline of the liver and tumors with pencil onto paper. I measured the lesions of each slice, and I assigned a value to each one … and totaled them … so I knew their change. I had more confidence in knowing all slices of the liver than any written report by the radiologist.

I also printed the images on paper … and used a razor blade to scrape the tumors off my liver.

Children use flash cards to learn. I made a deck of flash cards.

I turned my terminal cancer into a very serious game.

One of the researchers at the hospital asked me if I would make a list of the things I was doing because I was surviving and others were not. I wrote about my strategy and then there were requests from friends with cancer who wanted to know what I was doing, and so, I began making copies. I finally had Kinko’s print it as a soft cover book.

Writing was part of my therapy. It doesn’t cost a single penny. I tell every one when they are planning their agenda … to write … and re-write … and re-write again.

Do you remember the song, “Sixteen Tons”? “Saint Peter, don’t call … ‘cause I can’t go … I owe my soul to the Company Store”. I went to the bank and borrowed $50,000. I didn’t tell them that I had been given a very short time to live.

In the book, “The Hidden Messages in Water”, there is reference to a doctor who treats his cancer patients with mountain climbing because giving people a reason to live boosts their spirits and their immune system.

I believe our immune system can be positively or negatively impacted by our emotional environment.

One of our sons was going through a particularly difficult family crisis. He told me it was hopeless. I told him he should have a colonoscopy. They removed fifteen inches of his colon.

I decided early on when it comes to a positive attitude, the word “positive” is over spoken and under worked. “Positive” must be an action word … not a description … and that is how it is normally used. I received a colostomy during that operation in 1996 – certainly, a gift I did not want.

As much as I detest it … I know I won’t need diapers … at some time in the future. If I think about my colostomy in this way … that describes an attitude as an adjective.

Let me tell you, it wasn’t easy … because sometimes there is something mean about a colostomy

There is a difference between attitude and investment. I adjusted my attitude about a colostomy and it became a positive attitude. Our strategy needs to include investments … in addition to a positive attitude.

I set goals, long and short term … like the loan from the bank. I figured that I needed a Cadillac dream … not a compact dream … and so I bought a beautiful 1993 pearl Cadillac STS … with the Northstar engine.

I lost $35,000 in a ponzy scheme because I wanted to raise money to develop a cancer fighting computer game. Of course, I didn’t know it was a ponzy scheme and I lost the money.

I think we all wonder why we get some dread disease. “Why me? How had I gotten it?” Well, I had it … and there is sort of denial for a while but that finally passes. No matter how I got it … for whatever the reason … I forgave myself. The need for forgiveness … and to ask for forgiveness where some may be due …. was important.

When it came to prayer, I made a decision not to pray for myself. I prayed for others because I knew others were praying for me.

I wanted my grandmother, Julia, to be my guardian angel. She has been gone from this earth for nearly a century and I have heard many stories about her angelic qualities. I covered the monitor of my computer with her face as wall paper so that I could be reminded of the role I was asking her to play.

I also stuck an angel pin on my wallet so each time I pull it from my pocket … and it snags or hangs up a bit … and it always does … more than a bit … I am reminded that I have a guardian angel at work.

I believe we must listen to our inner voice.

I watched comedy because that is a prescription by some of the experts … and I listened to gospel music when I went to bed … that was my own prescription.

I took vitamins and supplements for a vey short time because I found my tumors growing and I read that some vitamins cause tumor growth.

I am near vegetarian.

I called old friends … some as far back as before 1940. I decided that if they were important to me at one time … I wanted to tell them.

One of them sent some words attributed to an advertising man. The idea of it is to use the “magic” word. The word isn’t magic all by itself but the use of it produces such magical results it seems like magic. The word is ASK.

When I was in the hospital, I asked questions and spoke my mind more than they liked. When I asked for my records … I found they had written that I was a difficult patient … but, that’s okay … maybe, the difficult patients are the ones who survive.

After achieving some success … I reached out to people with cancer … some who I knew and those who I was told about … or read about … because I wanted to give them hope … and I knew a lot of them were in short supply.

It seems go me the person who has been given no hope … probably has no hope.

I advertised with posters and on radio and the newspapers for cancer patients to get together and talk about strategies. I was a patient … not an expert … but, I believed I had something to offer.

I used to subscribe to the Investor’s Business Daily and they listed ten traits that turn dreams into reality. The traits have to do with how we think, deciding on dreams and goals … planning … taking action.

If there is to be profit, there must be investment.

Remember the words from the “Man of La Mancha”? To dream the impossible dream … to fight the unbeatable foe … to bear with unbearable sorrow … to run where the brave dare not go.

To dream and to bear sorrows and brave the fight … these are investments.

There are many unanswered questions about surviving cancer.

I want to share some of my philosophies.

I believe if life is the greatest of all gifts … we should do everything to keep it.

As I see it, we should choose to live and this isn’t necessarily easy for a lot of people.

I believe cancer may have significant spiritual roots.

I believe most of us believe we are fairly spiritual … but if we are … why are we so messed up?

I believe, if our spiritual health did not play a role before cancer, it very well may when our doctor tells us that we are going to die.

We cannot separate love from gratitude. We can’t have one without the other. I believe we should be thankful for life. Each day I say, “Thank you for today, thank you for yesterday, and thank you for the anticipation of tomorrow.” I believe in yesterday, today and many tomorrows.

I know I am blest … blest because at age 68, Stage IV colon cancer made a profound change in my life.

Death is my enemy and I see nothing the matter with this idea even though a number of people have told me it is wrong. I know that at some time in the future, grace will set in and death will be my enemy no longer.

Dr. Dean Ornish speaks on the healing power of love. Let me quote “I am not aware of any other factor in medicine … not diet … not smoking … not exercise … not stress … not genetics … not drugs … not surgery .. that has a greater impact on illness, and premature death from all causes.”

He argues that love and intimacy are a root of what makes us sick and what makes us well … what causes sadness and what brings happiness ... what makes us suffer and what makes us heal.

He says the real epidemic in our culture is what he calls emotional and spiritual heart disease … the profound sense of loneliness, isolation, alienation and depression that are so prevalent.

And, with that, I think of our son and fifteen inches of lost colon.

When we are given a grim prognosis … we need to keep looking. It was the fourth doctor when I found one who would do something.

I met Mikki. Her home was Pocatello and she said she was living the good life in Florida when she was diagnosed with incurable brain cancer. She could not find one solitary doctor or hospital that would help- her.

She and her husband sold everything they had … and scoured the country looking for help-. Finally, in North Carolina … on their 19^th stop … a doctor at the hospital agreed to see her. The surgery was prolonged and difficult but when I saw her last, she said … she’s in love with life.

The lesson is simple though the answer may be elusive … don’t quit looking! We should not quit with the first two or three terminal predictions.

I have suggested to a number of patients to get additional opinions. No cancer patient should be married to their oncologist.

Dave lives in West Valley City. His oncologist told him they had done all they could do. Dave asked for a copy of his medical records in order to get another opinion. His oncologist asked, “Why? Why would you do that?” Why not?

Our emotions are fragile and we don’t stay emotionally up all the time … sometimes, there is a let down. We can’t help it. Perhaps, it’s the side effects of chemotherapy or just the awareness of our situation. Visualization on the computer … the scans and the tracings … and the proof to me that I was making progress … lifted me up and gave me hope. Hope is a necessity.

Some cancer patients don’t talk about what they are going through … or the future. I remember speaking with a young lady in Florida whose mother was shutting her … and her siblings … out. She didn’t want to talk to them about it.

I didn’t know them. I had spoken with one of the daughters and the mother on the phone a couple of times. I called the mother and relayed that her children … and these were adult children … really needed to be able to talk with her and she was not letting that happen.

I called the mother later on. The family had rented a house in Charleston for a week … and they talked … and she said it was a great visit.

I wonder how doctors would feel if they knew what some of their patients say.

Natalia from Montreal sent me an email. The doctors gave her 58-year old mother six months to live. She said, “The doctors do not cooperate with us to cure her but do everything to discourage us and put us down.”

If I had three wishes: Doctors would not steal hope from their patients. Every cancer patient would have a mentor … one who would help with hope and strategies. Max DePree, a mentor in both the corporate and non-profit world, said he once heard a wonderful description of the work of a mentor: A bird doesn’t sing because it has a message. It sings because it has a song.

Finally … the third wish … for patients to not give up. There probably is a time when the medical folks legitimately say, “We can’t do anything more” but that is still not the time for the patient to give up.

I believe if I succeeded … others can, too.

I’ve shared my thoughts with many people. There have been thousands of visits on my web page.

I have appreciated some very welcome comments.

Dr. Lauren Langford of the M. D. Anderson Cancer Center in Houston wrote and said: “Most everybody will have a chronic disease and we all need your approach.”

I received a letter some time ago from Dr. James S. Gordon who is president of the Center for Mind-Body Medicine. He said, “I really appreciate the courage, common sense, and beauty of the work that you’ve been doing and the generosity with which you share it.”

Those letters mean a great deal to me but not nearly as much as some I receive from patients.

A letter I received from Marsanne in Shreveport read: “It was great talking with you today. Your remarkable story is a gift, not only to you and your family, but also to the thousands of others, like us, who find hope in a place where there was NONE. Thanks for taking time to talk to Mom.”

And, from Anne in Maryland: “ … You were the first person to offer us hope and it has taken a strong hold! I am really beginning to understand what you meant when you said the doctors teach us about the disease but we must teach ourselves how to survive! … because of you we have not wasted a moment in despair.”

Her husband … after reading my thoughts … leased a new Lexus on a three year plan.

Some way … we must find a jump start. Kathleen, in Minnesota … had lung cancer for quite some time … during those days, she was bedridden … oxygen full time … too weak to get out of bed by herself. The day came when they all thought she might not survive the day. She accepted the inevitable.

But, something happened that day. The word spread that she was close to the end … and one who called her was her lawyer. She had been a best selling author of history romance. She told me that her lawyer was an “unbeliever” and that she had witnessed to him … and as they talked the thought crossed her mind … that if she lived … perhaps, he would believe. She felt a tiny singe of hope.

The next day, she received a phone call from her daughter-in-law’s sister who said she dreamt that Kathy lived and she took that as affirmation that she would be healed.

The tumors shrunk to more than half their original size and have not changed in more than a year.

Imagine … this thought … that if she lived … an unbeliever might believe. It was a dream of affirmation.

Not very scientific, is it?

These were jump starts. We can’t under estimate them … or the power of the mind and the spirit and the soul.

We are entitled to live but we must make some investments in addition to medical treatment … and be blest … and be lucky.

These past years have been an adventure. Not the usual kind of adventure, to be sure, but one none the less.

We don’t know where the hand that guides us … will take us. I’m nearly 82. I intend to keep telling people what I have been telling them: Choose to live. Listen to your inner voice. Create a strategy. Don’t give up. Find a reason to live. We are entitled to win.

I would not have survived had I become a patient of the first oncologist I was referred to.

Nor would I have survived if I had depended entirely on pharmaceuticals … and the results of the clinical trial support that opinion.

I attribute my well being to a long list.

This truly is a day of celebration.

I heard a story from the pulpit about a person who served seven years in prison. He was just a fair golfer before he went to prison but while he was there he visualized himself playing golf and swinging the club properly. He practiced often, maybe daily. After he served his time he played a game of golf and he had greatly improved his game. Had it all come from his mind? Was it the power of visualization?

a great secret

I like cowboy poetry. Let me share a piece by S. Omar Barker … and tie it in with some of my thoughts about cancer.

purt near

They called him purt near Perkins, for unless the bugger lied.
He'd purt near been a preacher and he'd purt near roped a bear,
He'd met up with Comanchees once, and purt near lost his hair.
He’d purt near done most everything that he had ever tried.

He'd purt near wed an heiress who had money by the keg.
He'd purt near had the measles and he'd purt near broke his leg.
He'd purt near been a trail boss and accordin' to his claim,
He'd purt near shot Bill Hickock which had purt near won him fame.

He'd purt near rode the broncs upon which no one else had stuck,
In fact he was the cowboy who had purt near drowned the duck.
Now mostly all the cowboys on the Lazy S.B. spread,
They took his talkin' with a grin and let him fight his head.

But one named Tom McGuinness sorta told it to him rough.
You're ridin' with an outfit now, where purt near ain't enough.
We tie our lass ropes to the horn, and what we catch we hold.
And purt near is one alibi we never do unfold.

In fact right now I'll tell you, that no two words I hear,
Sounds quite so plain damn useless as that little pair … purt near.
That’s how old Tom McGuinness laid it out upon the line.
And like a heap of preachin' talk, it sounded mighty fine.

But one day Tom McGuinness while a ridin' off alone,
He lamed his horse and had to catch some hostile nesters roan.
To ride back to the ranch on, but somewhere's along the way.
A bunch of nesters held him up, and there was hell to pay.

Tom claimed he hadn't stole the horse, just borrowed it to ride.
Them nesters hated cowboys and they told him that he lied.
They cussed him for a horse thief, claimed they'd caught him with the goods
And set right out to hang him in a near by patch of woods.

They had poor Tom surrounded with their guns all fixed to shoot,
It looked like this poor cowboy sure had heard his last owl hoot.
They tied a rope around his neck and throwed it o'er a limb,
And Tom McGuinness purt near knowed this was the last of him.

When suddenly a shot rang out from somewhere up the hill,
Them nesters dropped the rope and ran like nesters sometimes will.
When bullets started wizzin' Tom's heart lept up with hope,
To see old Purt Near Perkins ridin' toward him at a lope.

"Looks like I purt near got here just in time." old purt near Perkins said,
"To see them nesters hang you." Tom’s face got kind of red.
"You purt near did," he purt near grinned, "They purt near had me strung."
"You're lookin' at a cowboy who has purt near just been hung."

"And also one who's changed his mind for no word ever said,"
"Can sound as sweet as PURT NEAR when a man's been purt near dead!"

I think I heard the doctor say, “Hey Bob, you’re purt near dead!”

Purt near. “Six months. Four months. Three weeks”.

I remember a surgeon early in 1997 … not only did he save my life … but he changed it … he was my Purt Near Perkins because he shared with me a great secret. Every body with cancer … or some other dread disease … needs to hear the secret about how to get up. He said something very simple but most patients never hear it. The secret: “Some of whether or not you survive is up to you” … and he said it when I was purt near down. I heard him … I had to figure out how to get up.

I began to plot and plan.

I got additional opinions. I focused on hospitals: M.D. Anderson in Houston, a hospital in San Diego and the University of Utah. I remember one person at M. D. Anderson suggested my odds of survival was statistically about two percent. I told her that was not good enough ... she told me it was better than zero. I said that if she would go to Las Vegas ... she might learn the difference between zero and two percent.

In my case, it was the fourth doctor before I found someone who gave me hope.

I want to tell you about Mikki. Her home was in Idaho and she said she was living the good life in Florida when she was diagnosed with incurable brain cancer. She said she could not find one solitary doctor or hospital that would help her.

She and her husband sold everything they had in Florida ... bought an old 1963 ... 23 foot motor home ... and they kept looking ... crisscrossing the country. Finally ... a doctor at a hospital promised to see her. It was their 19^th stop ... and it was the turning point for her. When I saw her last, she said … she’s in love with life. Think of it. Nineteen stops … before that stop … she was … purt near dead.

The lesson is simple though the answer may be elusive ... don’t quit looking! We should not quit with the first two or three terminal predictions.

I listened to my inner voice. Some are better at listening than others. I had to make decisions about how to even approach this cancer thing. I mean, cancer is scary.

We go to the Internet looking for information, don’t we? Or some family member … or friend does. The Internet has lots of information ... some is accurate and some is suspect and some is downright wrong. We can find information about any subject … we sort of have to make a decision about what’s true.

I remember … early on … everybody talked about diet and vitamins. So I took a whole bunch of vitamins and my tumors grew 400% in a short time. Then I found on the Internet that some vitamins cause tumor growth. So … I quit every one. I don’t know if that was smart but that was what I decided.

Something else my inner voice told me … don’t lose hair and don’t lose weight. I remember when I would visit the doctor and I would be questioned … “How are you gaining weight? No body else is!”

You see, I knew how. I didn’t eat oat meal for breakfast. I ate the best, richest ice cream I could find. And everyone thought I was crazy. But, I gained forty-five pounds and my tumors shrunk.

There are events in our life that confirm our inner voice is real. It had been quite some time since I had called Ray … but I called him because he was on my mind and I told him I just wanted to tell him that I was thinking of him. After a pause, he thanked me and said my call was very meaningful because it was the lowest day of his professional life.

I have a profound illustration. Lori lives in Salt Lake City. She called her friend in Arizona … but there was no answer. Her friend should have been home. Lori listened to her inner voice … it was evening but she drove to Arizona without delay. Lori found her friend preparing to take her own life … and … that would have happened if Lori had ignored her inside prodding.

Lori’s friend, save for Lori listening to her inner voice … was purt near dead.

I picked a right good guardian angel. I had always heard that my grandmother … who died when my dad was just a young boy … was as near to being an angel as ever lived. I placed her face on my computer as wallpaper so I was reminded of her every day.

I placed an angel pin on my wallet so I was reminded of her each time I pulled my wallet from my pocket.

I’m looking forward to visiting my grandmother … but, that will be another time. She will wait for me.

I believed death was my enemy. I have been told this is wrong … but I don’t think so. The time may come when death is not my enemy … but that time’s not here yet.

It’s mostly some of the church people who tell me it’s wrong. I was invited to give the morning message in a church on one occasion when the pastor was on vacation … he suggested to them that I had some good things to say … I’m not sure about how good they were but they were different.

I think they condition us in Sunday School and church that it’s okay to die … it’s in the hands of the Lord. We hear in funeral lines: “He’s gone to a better place.” And, we hope that’s the case but it’s more complicated than that. I think there needs to be more emphasis on Deuteronomy 30 … verse 19. “Choose life … that you and your descendants may live”.

I located a medical team I could believe in: a surgeon … an oncologist and a medical social worker. This was not an easy thing.

I tell those with cancer, if your doctor says you’re going to die … fire your doctor.

I also say … no cancer patient should ever be married to their oncologist. It took Mikki nineteen stops before she found help.

My medical team are my heroes and they know that I think of them in that manner.

Now, let me say this, too. I believe most cancer patients need a mentor. The medical social worker is the one most likely to fill that role. But that’s not always the case. Sometimes, some of the oncology offices don’t have medical social workers available.

I believe they should … but, they don’t.

In our story … Purt Near Perkins … was the mentor. He saved old Tom.

You see, the mentor can be anybody.

I entered a clinical trial. This was a very important part of the process.

This was the medical part. It was a world-wide trial. There were 1,210 patients on the study. The drug was known as Capecitabine. After the trial period it became known as Xeloda.

There was certainly one advantage … that of being a pill instead of an IV injection. Though there was little difference in survivability … there was a great deal of difference in quality of life!

I would have been ineligible to participate in the trial if I had already commenced some other program. Some trials require that there is no previous treatment. I think some patients begin treatment without exploring all their options … and they do it because cancer is scary.

I attribute my success to not only the clinical trial but also because I developed a strategy to supplement the medical treatment.

I attribute my success to a long list.

I turned my cancer into a computer game. This may have been the single most important addition to the medical treatment … and it all began by accident. I remember being asked, while I was still in the hospital, “What do you know about visualization?” My response was that it needed to be brought up to date – made into a game and played on computers.

Now, I don’t know why I said that … it just slipped out … but, I followed up on that religiously. It made sense to me. I may have been listening to my inner voice.

I studied each slice. I assigned a numerical value to each tumor … and totaled them. I looked for the numerical value of the tumors to decrease from scan to scan.

I was able to see what my cancer looked like. It didn’t make any difference about radiologists’ reports … I knew the change in my cancer.

I was able to get emotionally up when I was purt near down.

I can still see … in my mind’s eye … after all these years … those images of my liver and the tumors.

I wrote and rewrote my strategies. I tell people to write and rewrite. It doesn’t cost a single penny … only time limited by imagination … only constrained by the mind and the spirit.

There are a lot of people who used a sheet of paper when they made important decisions. They would draw a line down the center of the page and write the positives on one side … and the negatives on the other. Thinking can sometimes make more sense if we use a pencil and piece of paper.

If we are going to reap rewards, there must be investment.

I used to subscribe to the Investor’s Business Daily and they listed ten traits that, when combined, can turn dreams into reality.

1. How you think is everything. Always be positive. Think success, not failure. Beware of a negative environment.

2. Decide upon your true dreams and goals, write down your specific goals and develop a plan to reach them.

3. Take action. Goals are nothing without action. Don’t be afraid to get started. Just do it.

4. Never stop learning. Go back to school or read books. Get training and acquire skills.

5. Be persistent and work hard. Success is a marathon, not a sprint. Never give up.

6. Learn to analyze details. Get all the facts, all the input. Learn from your mistakes. Focus your time and money. Don’t let other people or things distract you.

7. Don’t be afraid to innovate; be different. Following the herd is a sure way to mediocrity.

8. Deal and communicate with people effectively. No person is an island. 9. Learn to understand and motivate others.

10. Be honest and dependable; take responsibility. Otherwise, numbers 1 through 9 won’t matter.

And I add #11. Write and rewrite. It’s investment. Creative positive thinking.

Remember the words from the “Man of La Mancha”? To dream the impossible dream … to fight the unbeatable foe … to bear with unbearable sorrow … to run where the brave dare not go.

That’s where we find ourselves sometimes … we bear the sorrows and brave the fight … we look for the traits that will accomplish our dream of … no more cancer.

Surviving cancer may well be a possible dream!

I prayed … I gave thanks .. but my prayers were for others with cancer rather than myself. This idea about not praying for oneself has not been accepted by a whole lot of people who I have talked with.

But, I believe, intercessory prayer is more powerful … and sound psychologically, because we aren’t thinking about our self then … we are thinking about someone else.

When I was much younger than now, I thought ... how great it would be to be able to sing like my grandpa ... or dance.  I can tap a foot to some lively tune, but I do it under the table so no one can see me.  My grandpa could sing and dance like crazy.  He used to sing us cowboy tunes like "Streets of Laredo".   I remember that.  The ladies loved him because he was a great dancer and I suspect he sang softly in their ear and that got him in a whole lot of trouble.  Grandpa's aren't supposed to do that.

I can't do those things but I can write and string words together.  If I can say something inspiring to a person who needs encouraging ... or something hopeful to one who needs some faith ... then, I will have been successful. Even more important ... if I can challenge one with cancer ... or some other dreadful burden ... then, perhaps, I will have made a difference.

Prayer and giving thanks … and hope to others … is a part of making a difference.

I went to the bank and borrowed $50,000. Have you ever heard the song, “Sixteen Tons” by Merle Travis? … One chorus is:

You load sixteen tons and what do you get?

Another day older and deeper in debt.

Saint Peter, don’t you call me ‘cause I can’t go

I owe my soul to the company store.

I borrowed the money. I didn’t tell them I only had a short time to live. I had to pay it back. It required action. Everyone talks about the necessity of a positive attitude.  The word "positive" is over spoken and under worked. 

Returning in thought to the cowboy poetry:

But one day Tom McGuinness while a ridin' off alone,
He lamed his horse and had to catch some hostile nesters roan.

Tom McGuinness needed a horse to get back home … and he took positive action. "Positive" must be a busy word.  It must be action as well as attitude.    And so, I believe, it is not just a positive attitude that we need; it is developing and following a positive agenda. 

I wanted a Cadillac dream … not a compact dream … so I bought a Cadillac. Anne’s husband in Maryland had my same short term diagnosis ... and after reading my thoughts ... he leased a new Lexus on a three year plan.

He’s the only person I know who filled his Lexus dream after hearing about my Cadillac dream.

Anne reminded me later that his original diagnosis was for Stage IV colorectal cancer that had spread with numerous inoperable lesions into his liver. His CEA had been over 600. Later on … she told me … his CEA was 5 and the scan could not even detect evidence of his primary tumor. His oncologist used words like “complete remission” and “cure”.

I called old friends from as far back as the 1930s to tell them they had been significant in my life. I should have done that a long time ago.

I made a deck of flash cards. Children learn with flash cards. My cards show my liver … my cancer … and I can look at them when ever I like. I can also show them to others who they might encourage.

I held strategy groups. I advertised on radio and a newspaper and put up fliers for cancer patients to get together and talk.

Some don’t want to talk. Some don’t want to talk about what they are going through … or the future. I remember speaking with a young lady in Florida whose mother was shutting her ... and her siblings ... out. She didn’t want to talk with them about it.

I didn’t know them. I had spoken with one of the daughters and the mother on the phone a couple of times. I called the mother and relayed that her children … these were adult children … really needed to be able to talk with her and she was not letting that happen.

I called the mother later on. The family had rented a house in Charleston, South Carolina for a week ... and they talked ... and she said it was a great visit.

I talked with patients and their families whenever I could.

I spoke publicly. I spoke in churches, hospitals, medical settings … Rotaries … an Assisted Living Center. I spoke at an Assisted Living Center only once. When I saw those in attendance, I asked how many knew what I was there to speak about. Nobody knew. I suppose some who heard me in these places … figured I was coming somewhat from off the wall … and that’s okay. I would prefer they don’t think I’m crazy … but a bit off the wall is alright.

I’m sure some of my ideas were more important than others. I don’t know which ones worked … or if it was a combination.

But, I know I am blest. I know I am lucky. I know I am very, very grateful.

In 1942, Winston Churchill was invited to speak at a commencement in England. He spoke only three words. There were eleven letters. He repeated the words a few times but there were still only three words. “Nev-ah, nev-ah, nev-ah, nev-ah, nev-ah give up.”

Ben Stein said, “The first step to getting the things you want out of life is this: Decide what you want.”

You don’t fall off a bicycle unless you stop pedaling.

You don’t lose the race unless you don’t get up when you stumble.

I like to believe this is a day of celebration … because we live. A day bent toward the proposition that our heroes are divinely inspired. If our medical team are not our heroes we must find those who are.

We must cultivate within ourselves the idea that we are entitled to succeed. There are a couple of lines in music sung in some churches: “All things are possible … only believe”.

When I began my journey with cancer … I believe cure was not in the mind of the first three doctors: the surgeon who had operated … the oncologist … and another who gave a third opinion.

I believe our mind and spirit are critical.

I want to tell a story about the mind and spirit. It’s personal … it’s about someone in our family.

Kathleen Woodiwiss is my wife’s aunt although she is five years younger than my wife. She is widely credited with having founded the modern historical romance novels. Her first book, “The Flame and the Flower” was published in 1972.

I want to tell the story in two parts.

Part I

I don’t remember just when she developed lung cancer but in January, 2004 she was not expected to survive the night. Family and friends came to say their goodbyes.

One of her daughter-in-law’s friends came that evening and told Kathleen she had dreamed that she would not die but that she would live.

Kathleen was very religious – a very spiritual lady – and she told me that she had witnessed for a long time to her attorney … that he was a non-believer. This comment about not dying prompted an involuntary thought … that if she lived, perhaps, this “non-believer” would “believe”. This furnished a reason to live, didn’t it? … in addition to all the normal reasons like the closeness she shared with her family. And, there were the grandchildren who were excelling … and she was very proud of them. But, “if i live, maybe he will believe.”

Kathleen didn’t die that night and the doctors were amazed because her tumors reduced and then became dormant.

I don’t know about the impact with her attorney. I never asked. But, something caused Kathleen’s tumors to change and I believe it probably had to do with those events that night.

Part II

I think she had a scan about April, 2007 and I understood that there was no change in her tumors.

Kathleen had three sons. Two lived together and on June 17^th, one of her sons was found dead in their home by his brother. The cancer returned with a vengeance and Kathleen entered the hospital twelve days later.

I called and spoke to her son, Sean … who had seen her earlier in the day. She told him that she didn’t expect to live.

Kathleen died July 6, 2007, seven days after entering the hospital; nineteen days after the death of her son, Dorren.

I think it’s important to remember the first part when she was told – “I dreamed that you would live” and her thought, “If I live maybe he will believe”

… but we must also remember the second part because there are days when we will be so far down and we won’t know how to get up.

We should not forget “Purt Near” Perkins. In 1996, I interpreted … “Hey Bob … Purt Near dead”.

Now, here’s one of my off the wall thoughts: Life is walking the streets and knocking on doors. It began with the peek of daylight that very first day. Some of the rooms behind the doors are full of excitement and other rooms are disappointing. Every room produces a cloud or a silver lining.

There is risk behind each door. Whatever the case, what we find in that room is temporary … because that’s what life is about. Life is a process of constant change.

We find our self in every room where we open the door … because we are the protagonist in this story. I want to suggest a plot that is all too real for many of us. Imagine, if you will … we enter the room and there we are … bewildered … in shock … wondering “why”.

There is someone else is in the room and we hear: “You have colon cancer and it has metastasized to your liver. You are not a candidate for surgery … you are not a candidate for transplant. You are going to die. We can keep you alive for a little while with chemotherapy … but you are still going to die”.

This was my story. Purt near dead. It’s been the story of many others.

Another thought: I was thinking a while back … as I watched the cars speed down the Interstate … they’re like life … they speed by so quickly. That has been my life. Then one day, there was a crash and I moved to a new home.

My home is in the house of cancer. It is where I live. It is where I have lived every day since 1996. I thought I would move away … find another home … but, once this became my home … I haven’t been able to leave it.

More than a decade has followed and it has been a significant period in my life. Cancer changed me.

I have a great secret to share … some of whether or not you survive is up to you.

And, I can say for a fact … as Tom McGuinness, himself, declared:

“For no word ever said, can sound as sweet as “Purt Near” when a man’s been “Purt Near” dead!”

I think it was Senator Claude Pepper who said something to the effect that we won’t fall off a bicycle … unless we stop pedaling.

I want to pass on some words and thoughts from “The Race” that sort of say the same thing.

When we were young ... imagine, if you will ... running a race at school ... or perhaps, against a friend or two ... and we’re runnin’ as fast as we can ... we find even a shallow dip may cause us to fall. We must get up ... and run ... ever faster ... if we are going to win the race.

Our life is full of dips ... ups and downs. All we have to do to win ... is rise each time we fall.

The medical people said about me … “Some people respond exceptionally well for reasons we don’t understand.” I believe in miracles. I think they need some help sometimes, but … I believe in miracles none the less. There are too many to deny them.

I believe that no matter how advanced the cancer is, it may never be too late to reverse it even when the medical community has given up.

I believe miracles can come along and sit on our shoulder.

If I have a great secret to share … that being … some of whether or not you survive is up to you …

Then, why shouldn’t I share it? …

Why shouldn’t I share it?

“This I Believe” and “16 Questions” are handouts as discussion points for cancer patients at support groups.

THIS I BELIEVE

This I believe. Where ever we find our self, whether on the mountain top or deep in the valley, whether in a mansion or homeless on a dark street, that is where our home is. It is where we live. My home is in the house of cancer. It is where I live.

To live in such a house changes us. The prognosis was grim from the start: “Six months to two years” … “Four to six months, closer to four”… “Four months” … “Perhaps, three weeks”. Such a prognosis changes us.

This I believe. Why? Why me? What did I do to cause this thing?

I have lived in this house every day since December, 1996. I have not escaped any day and it invades my dreaming time at night.

My thoughts are not about myself. They are about others with cancer because I believe we are entitled to live and I want to share that idea because I should. The Internet tells me I am able.

I believe some of whether or not we survive is up to us. The doctors treat us for the disease but we must find the way to win the war. The battle plan for winning the war consists of winning the final battle.

I say if the doctor tells us we are going to die, we should fire the doctor. I also say we should never be married to our oncologist. There may be a miracle ahead if we move on.

We must find a way to get up when we stumble because there’s a race to be won.

We must use the magic word because it can open all sort of doors. The word is “Ask”. The answer may just hold a surprise or two.

My grandmother died twenty years before I was born but I had heard she was the nearest to being an angel that ever lived. I wanted her for my guardian angel and her face filled the monitor of my computer so I would not forget her role.

We must see our tumors, erase them -- cut them out. Later, during our quiet or our busy time, our tumors come to us, in our mind’s eye, and we see them again. They belong to us. They are a part of us. We own them.

We must find the switch within that may alter the direction of that dread prognosis. This I believe.

Who do we pray for at such a time? I believe we pray for others because others are praying for us.

We must search for movement in a positive attitude. Unless there’s movement the word “positive” is inaction. We need a strategy of action.

We also need some luck but some of that comes from our own creation.

We should be grateful because life is the greatest of all gifts!

This I believe!

16 QUESTIONS

1. How did you deal with “Why me?” Was this something you even thought about?

2. Do you believe in predestination and that there isn’t much we can do if it is our time?

3. Where does faith and prayer fit in? Forgiveness, gratitude, etc?

4. Did you accept the oncologist who your doctor referred you to, and if disappointed with them, remained without considering a change?

5. What role do you assume, along with the oncologist, in your treatment?

6. Do you get a copy of your scans and actually study them – each slice – and understand the change from one scan to another? Is this important?

7. I said, “Death is my enemy”. Some have told me that I shouldn’t say that. What do you say? I also say “Choose to Live”.

8. Did you develop a medical team?

9. Is the place of your treatment important? Does your medical insurance limit choice?

10. Have you developed a strategy to augment the medical treatment? Does it include investment?

11. What does your cancer look like? Can you see it in your mind’s eye right now?

12. How do you deal with the emotional roller coaster? How do you get up when you are emotionally down?

13. What does the word “Positive” mean to you?

14. Are you a private person or do you share with others your journey with cancer?

15. What role does the mind-body-spirit connection play in your thinking or in your actions?

16. “Every great dream begins with a dreamer” – quote from Harriett Tubman, runaway slave from Maryland who became known as the “Moses of her people”.

THE MIRACLE OF THE MIND

(And Something Clicked)

We search for a rainbow after the storm.

I believe in the power of the mind and spirit and it is essential as we take on the fight. I will share six examples.

First: After my second surgery, Dr. Kim told me some of whether I survive is up to me. Something clicked. It was as if I accepted the challenge.

Second: Scott, in Maryland, had the same prognosis as I had: Stage IV colon cancer and given just a few months to live. He leased a Lexus on a three year plan. His wife, Ann, used her mind to erase his tumors. The miracle of the mind …

Third: Kathleen Woodiwiss was a best selling author who wrote historical romance. She is my wife’s aunt although she was younger than my wife. Kathleen developed lung cancer and the day came when they said she would not live through the night. Family and friends came to say goodbye. One who came was a friend of her daughter-in-law and she told Kathleen that she had dreamed the night before that Kathleen was not going to die.

Kathleen was evangelical and she told me that when she heard about the dream the thought came to her that if she lived maybe her attorney would “believe”. He was an unbeliever and she had been praying for him for a long time. Kathleen didn’t die that night and her tumors went into remission. Something clicked.

Kathleen had three sons and later on one of her sons found his brother dead in the home from an apparent heart attack. Kathleen lived with her oldest son’s family and the other two lived next door. I waited a couple of days to call to see how Kathleen was holding up. She wasn’t. Sean told me the cancer came back with a vengeance and she would probably die within the week. She died on July 6, 2007, just a few days after the unexpected death of her son.

I believe this illustrates the power of the mind and the spirit. “If she lived, maybe he would believe” and she lived … and then her son unexpectedly died.

Fourth: I received a call from my friend, Rita, in Illinois. She told me her sister who lives in Washington has a best friend in Montana who was having a very difficult time with cancer and asked if I would send her a book, email or call her. I called and we talked. I believe I sent her a book and an audio CD. I think she was Stage IV colon cancer but I am not certain of that. Later she told me that at the very instant I called, she was praying that she didn’t want to die but if it was to be, let her die with dignity. If she was to live, show her how. And then the phone rang and I told her she was entitled to live and ... something clicked.

I called several months later and her husband told me she was at the barn with the horses (she raises show horses) and that her cancer is in remission. I called Rita and she confirmed that her sister had told her the same thing.

Fifth: My wife’s family has a family reunion every two years and this summer it was here in Utah. Nancy’s aunt from Minnesota said that her mother used to visit her cousin in Green Bay, Wisconsin and she sure would like to know who that cousin was and how she was related. I am a genealogist and I told her I’d see what I could find. A couple days later, I called Syndi in Wisconsin and told her the purpose of my call. We talked for a few minutes and then she told me she just couldn’t talk right now because she was under a lot of stress --- her husband has Stage IV cancer. I asked her where it had metastasized and she asked, “What do you know about this?”

We talked and all of a sudden she asked, “Are you an angel? She didn’t understand how I could call from out of the blue and then talk about this great problem in their life. All of a sudden, something clicked.

Her husband wasn’t easy to live with. He didn’t talk about the cancer. She didn’t know that many patients with cancer shut family and friends out. I sent her a book and an audio.

That was June. She later sent an email to a number of friends, and included me, and said that the oncologist said that whatever he was doing, to keep it up.

“Some of whether or not you survive is up to you.” “If I live maybe he’ll believe.” An investment and the visualization of a wife. The phone rang as she prayed, “If I am to live show me how.” An unexpected telephone call, “Are you an angel?” In each case the event was unexpected and something clicked that changed the course.

What part does a family member or friend play in flipping the switch? Where is the mentor?

I sometimes wonder how much of my encouragement for a patient to develop a strategy really takes hold. Maybe too few times --- but sometimes.

Sixth: I received a call from a lady from northern Utah and she asked if she and her husband could come by and talk. They were devastated. She had just been diagnosed and given no hope. After our visit, she changed her oncologist, changed her place of treatment, etc. In fact, she, on an impulse, called Cancer Centers of America and after speaking with them decided to attend their treatment center in Zion, Illinois. That’s a long way from Utah. She listened to her inner voice.

The cancer center pays her air fare and expenses for the trip and so they made it financially work. She kept in touch with me and one day she called and said, “I feel like I owe you my life!” I had an upcoming group that I would be leading at the Cancer Wellness House and told her about it. She said they would come. It’s about 250 miles each way. After the meeting she gave me a small package. I opened it and it was what she had written … her beliefs about her cancer and strategies. Wow. Sometimes …

Summation: Something clicked … and I suspect it can click back again if we aren’t careful with even more scary results. Medical people may give one reason for reoccurrence but it may simply be that something was triggered in the mind and spirit again that set it off in the first place.

If that happens, we must again use the miracle of the mind and search for a rainbow after the storm.

THE GOSSIP GAME

Gossip. Did the doctor say that. Did we understand or misunderstand?

There was a game I remember from a long time ago. I think it was called “The Gossip Game”. Players would sit in a circle or line up and the first player would whisper something into the ear of the next player and it continued around the circle or down the line until the message reached the last player who would then announce what he had heard. The message invariably changed along the way. It would usually be sort of funny.

The game in this instance isn’t played in quite the same way. I am the patient and the game is played according to what I heard. However, the end result is similar to the gossip game.

Player # 1: The surgeon to the patient: “Statistically, you have six months to two years to live.”

Repeat -- Player # 1: The surgeon to the family of the patient: “Probably four to six month’s, closer to four”.

Player # 2: Oncologist to the patient: “You are going to die. We can keep you alive for a little while with chemotherapy but you are still going to die.”

Player # 3: Second opinion given to the patient: “Get your affairs in order. You have only four months to live.”

Player # 4: Second surgeon to the patient several months later: “I don’t think you’re going to die from this.”

Player # 5: Son of the patient who remembers words from

Player # 4: “The doctor said he almost lost you on the table and you may have only three weeks.”

Conclusion:

I had a late breakfast with Dr. Kim, Player # 4, on April 1, 2009 and I asked him about the comment our son had attributed to him.

He was puzzled about it -- shook his head -- couldn’t believe he had said it.

I believe between the saying and the hearing the prognosis of “three weeks” was misinterpreted just as the words changed from one player to the next while playing the gossip game.

MY COLOSTOMY

Embarrassment

There’s something mean about a colostomy, I mean really mean. They cared for me in the hospital and before leaving someone came to give me instructions about my colostomy. There were probably other instructions but I only remember being told that changing it is like snapping a lid on Tupperware. Of course, anyone can do that.

Then, I went home and it wasn’t long before I needed to change it … and I couldn’t. I was a wimp -- a sixty-eight year old wimp. There was that barrier thing. If I removed it, I had to replace it and what if I didn’t do it right. That could be a catastrophe. We have a daughter-in-law who is a nurse and she came to my rescue. It only took the one time before I was able to do it myself but there is more to it than just snapping it on.

A few years later, I went for supplies and I was asked if I would visit one of their customers with a new colostomy because he was having a tough time. I visited him and he was grateful. I learned something that day. I wasn’t the only wimp. It is an emotional storm.

It is my colostomy. I have owned it since December, 1996. I can’t return it. I’m not a surgeon. I don’t know if surgeons operate differently from one patient to another or why some colostomies can be reversed and others cannot but mine is mine to keep. I should have talked to the surgeon about reversing it much earlier than I did and I wonder if that may have made a difference. He hadn’t said anything about reversing it and I have wondered if it was because he hadn’t expected me to survive but a few months.

Sometimes we may not be using the best supplies for us and that requires patience. Sometimes a colostomy is dirty and that requires bleach. Sometimes they are smelly and that requires an air freshener.

Sometimes, it puffs up and for that we need loose clothing.

Then there are times when it requires that we be alone.

Early in this ownership, I was sitting in a restaurant – it was more of a coffee shop – and I had an accident which left some mess on the floor – down my leg and onto the floor and I was embarrassed. These were my friends and our waitress. All I could do was apologize because someone else had to clean it and that should not have been their job. The waitress was gracious and I learned that day that sometimes a colostomy requires humility.

Sometimes, our colostomy is painful – not necessarily a physical pain but an emotional one that requires understanding.

Our son, Dorian, and I flew to Atlanta to meet another son, Mike, who lives in North Carolina. About thirty minutes from Atlanta the airplane shot up like an elevator and the pressure in the plane increased. It blew the clip off the pouch and I was immediately dirty and sitting in a seat with no babies around to blame for the smell. I got myself to the restroom, hearing comments along the way, and cleaned myself up the best I could in the tiny confines of an airplane restroom.

The plane landed and Dorian and I left the plane and went straightway to retrieve our luggage. I was dying on the inside while waiting among the crowd. Our North Carolina son approached us and his greeting was, “You get cleaned up, change your clothes -- you can’t ride in my car this way!”

I took the luggage to the restroom, waited for a wide stall because I needed the room. Finally, the door opened and a man came out and the door closed behind him. I stepped forward to the door, began to open it but it was pulled back from the other side and there was a voice from inside. “Hey, I’m in here!” … Wow, and I thought it was empty. You just never know. Sometimes, a colostomy requires humor.

If the time were to come that we needed someone to change our diapers, we can say, “That won’t happen to me – I have a colostomy and it’s as easy to take care of as snapping a lid on Tupperware.” That’s a positive attitude.

Life is still the greatest of all gifts and sometimes it includes a gift we don’t ask for and one we don’t want.

Email from Australia, March 10, 2009

Hi Robert

It has been one year today since my operation. Your last correspondence asked me how it had all changed me. I felt I needed to give it some time before I was able to categorically and accurately answer you.

Yes, it has changed me, and to what I believe is a better person and man. I know I am more patient with problems and people, especially my family, which transfers to more understanding of other’s problems. I enjoy spending more time with family, and become quite teary eyed about the smallest things or memories. My work ethic has always been quite strong but find myself working harder in a shorter time frame to accomplish the same things. I am trying to do more things I have not taken the time to do before. I am more aware of my mortality, still frightened of it, but becoming less so. I have never been one for remembering dates, especially those important ones, yet have taken to diarying all of those and acting on them.

Robert, I have realized that my family is the most important part of my life and we are renewing our relationships every day. We are doing things together we have not taken the time for previously and seeing things and going places together we didn’t think we could afford to do, but are making happen anyway.

Overall life is good and continuing.

Thank you for your support and generosity in sharing.

I will keep in touch.

Regards,   

Brad

THANK GOD I’M NOT NUTS

I received the following email. It is an important letter as far as I’m concerned because I could personally relate to the idea Kerry’s sister had about the PAC men gobbling up the tumors in my liver. I went through that.

Back when that first doctor said I was going to die, we had a son who was in the computer game business and I thought we would develop a computer game but I couldn’t wait for that and so I used Photoshop as a substitute and erased the tumors with passion and determination.

If it worked for Kerry’s sister twenty-five years ago, and it worked for me thirteen years ago, and it worked for Kerry a couple years ago, then maybe the three of us can say for others to hear, “Thank God. We really aren’t nuts.”

I invite you to read what Kerry had to say.

“Date: Wed, 17 Feb 2010 22:38:01 -0600 [02/17/10 21:38:01 MST]

Subject: Thank god I'm not nuts

Robert,

I am a 67 year old guy.

April of 08 I was told I had colorectal cancer that had spread to a node and to my liver.  June of 08 the chemo doc told me I had 2 years to live. 

I had obtained a CD with my PET scan results and installed it on my home computer.  My wife thought I was nuts because I would study that damned PET to fully understand where the cancer was.  I was in the battle for my life, so I figured that I needed to know where the enemy was.  Then I could direct my body’s warriors to the battle front.  We first killed the node, then the liver invaders.  I have been cancer free for 13 months now.  I still have all my parts even though a few docs (fired them) wanted to cut out a bunch of my rectum and colon.  I told them no as I needed those parts. 

I cannot take full credit for this victory.  My older sister had breast cancer 25 years back.  They told her she had 6 months.  She told me she visualized her chemo as PAC men eating the cancer cells.  She is now 72.

I posted this on American Cancer society’s web site.  The response comments kind of made me look a little silly.  Then one woman posted your web site. You have validated me and my approach to fighting cancer.   People just don’t understand the untapped power our body’s have.  I have tried to explain it to be much like the placebo effect.  If we think it will happen - it will.   

Thanks again

Kerry

Ozarks of Missouri”

SHARE AND A LIGHT TURNS ON

There are many of us who

Live in the House of Cancer

8/09

The words contained here are not about me. They are about the writers who probably were surfing the Internet looking for someone who has survived Stage IV colon cancer and they found a few lines about my success published on the American Cancer Society web, or some other site, and they contacted me in search of hope. These are their stories.

Perhaps, by compiling these personal messages, others who reach out may read them and identify in a way that will be of value.

There are many of us who live in the house of cancer. It may be helpful if we share hope and ideas with each other.

Share … and A Light Turns On …

From: Barry Bittman, MD, 8/17/2004

(Note: CEO & Medical Director of Mind-Body Wellness Center, Meadville, PA; neurologist, author, international speaker).

Dear Bob:

Thanks for sharing your story and ideas.  As Bernie says, it is the "natives" that can help each other because they speak the same language and understand.  I know that your insights will help others travel their healing journey with hope.

Mary B., 11/11/2004

I just read this excerpt from the site and found it incredibly inspiring:

"I can’t do those things but I can write and string words together. If I can say something inspiring to a person who needs encouraging ... or something hopeful to one who needs some faith ... then, I will have been successful. Even more important ... if I can challenge one with cancer ... or some other dreadful burden ... then, perhaps, I will have made a difference. "

"I was sixty-eight years old. It doesn’t matter how old we are ... if we have cancer ... or some other dread disease ... we are too young."

"When my world changed, cancer would become my constant companion ... day and night. It would become a passion consuming part of my day hours and part of my dreaming time. "

In reading these words, you have already made a difference - you have given me more than any of my friends have been able to at this point, you have given me hope.

Your writing is eloquent - these are such true words that no one can fully understand unless they are living the disease or a close family member of someone that is.  Cancer does consume your life - from the day you hear that "C" word and every moment thereafter you are a different person... you wake and think "are we doing everything possible?", and information overload sets in as you read about side-effects so scary you wonder how anyone could handle them and words and names of drugs that you wish you had never known become a part of your normal vocabulary.

Please keep surviving - you are a very special person and the world needs you and your words!  As my mother is getting her treatments I will encourage her to read these words as well...

At the request of a friend I called Phyllis B on the telephone. I don’t know that she had ever heard my name before. Later she told me that when the phone rang that she was praying -- she didn’t want to die but if she must let her do it with dignity but if she could live, show her how.

At that moment the telephone rang and during our conversation I told her that she was “entitled” to live.

She took it to heart. Her tumors went into remission.

Phyllis raised show horses.

Phyllis B., 1/22/09

Thank you for the email and the attachments and all your kind and loving thoughts.  I went through an aggressive treatment program doing chemo and radiation at the same time which I completed last June.  The cancer was back when I had my follow up in November.  I initially agreed to start chemo again but then I did not hear from the clinic for several days.  During that delay, I had time to reconsider my decision.  I was torn between chemo and doing nothing.  So I surrendered it to a Higher Power and decided that if the clinic called me back by the following Friday, it was a sign that I should do the chemo.  But, if I didn't hear from them by Friday, it was a sign that I should forego the chemo.  I was also calling family and friends and letting them know the cancer was back.  My sister was so upset that I was considering not doing chemo.  On the Wednesday before my Friday deadline, I had this nagging urge to call the clinic.  I fought the urge most of the day and then decided I needed to listen to this inner voice and called the clinic.  The people I talked to did not know anything about my case or what was being set up for more chemo so I decided to tell them I was not going to continue treatment but wanted to get on board for pain management as the disease progressed.  The lady was very quiet and then told me she would have someone call me.  Well, unbeknownst to me, my sister called the clinic shortly after I made that call to beg Dr. Gibb to call me because if they didn't, I wasn't going to continue treatment.  She tried to upstage the Universe (out of love, of course) but I beat her to it.  The clinic called and we set up for pain management and for hospice to call me. 

Both my sisters were very upset and one of my sisters lives in LA and is married to a man from Mexico.  He told her that there were treatments in Mexico involving rattlesnakes that help fight cancer.  Long story (still long, sorry) short, we made the trip to southern Mexico where I drank the blood of two Costa Rican rattlesnakes and also ate the meat (still eating the dried meat), drank broth made from a buzzard, went to the University of Mexico clinic where they put me on a strict diet and gave me several different herbs to take.  Back in LA I started 2 treatments per day with Master Zhou, a Qi (chee) Gong master from China who uses Qi energy to heal.  I was gone about one month (total), and only doing most of the treatments for 2 weeks except the rattlesnake which was about 1 week earlier.  Master Zhou asked that I do a follow up with my doctor as soon as I got back to see what kind of progress was made.  So while still in LA I scheduled a CAT scan and blood test 2 days after I got back.  My oncologist called me the next evening and wanted to know what I was doing.  I asked why and he said because your tests a much improved.  He was amazed and wanted to know what I was doing.  My ca125 dropped from 585 to 290 and my CAT scan was improved, all the nodules were gone.  Dr. Gibb was amazed.  He said there is still cancer in there but it is much improved.  I explained most of what I was doing and he said he never heard of any of it but told me to keep doing what I was doing.  He said the clinic would be there for me no matter what I needed, including any tests or scans I wanted to monitor my progress.  Well, that phone call probably did a lot to boost my immune system and morale all by itself.  Anyway, I'll be going back to LA for more treatments with Master Zhou within 2 months. 

Just so you know, the Doctor at the University of Mexico clinic and Master Zhou both said the same thing, that if I could be happy, I could beat this cancer.  So you are right in your thinking about the mind, spirit, body connection.  I have been working hard on the happiness factor since being in LA and am making progress.  Of course, the good news from Dr. Gibb has boosted that quite a bit.  I have often reminded myself of your words, which had a deep impact on me to remember that I am entitled to live.  I'm ready to live.  Thank you and thanks to many other people who have helped me through acts, thoughts and prayers, I am going to live. 

Let me know how you are doing.  You mentioned the colostomy bag.  I would be interested to hear if you want to share.  I hope and pray you continue to do well and continue to help so many people facing the cancer diagnosis.  God bless you and keep you well,  Phyllis

Phyllis B., 1/23/2009

Thanks for sharing.  Just a thought......my husband had an accident in 2003 which left him paralyzed from the chest down.  So we have had much experience with "accidents," both bladder and bowel.  Many were in private but some were in public.  It's a tough road.  But as you know, there are always those who have an even tougher road than we do.  Life is a humbling experience.  But remember, true humility is the knowing that all things are equal therefore nothing matters and everything matters.  We are not more than or less than anyone or anything else.  Enjoy the good moments and learn and grow from the tough ones.  God bless, my friend, and stay in touch.  Phyl

Phyllis B.passed away on Thursday, July 9, 2009, from complications of cervical cancer.

Joella C., 2/26/2004

Well guys after knowing about my stupid cancer for 2.5 months now, I stupidly stupidly asked Keith that stupid question "so Keith how long has the Dr's given me."  Very hesitantly he asked if I was sure I wanted to know.  So of course very bravely I said ya I wanna know.  He said Dr Frenette is giving me 4 yrs with my current chemo.  I kinda expected 5 yrs but I kinda thought maybe I can beat this thing somehow.  So now I am emailing my closest friends and pray warriors and humbly asking each of you to pray for me as you have been.  I am so scared and sad.  This is a temporary status.  Tomorrow I will put on my fighting boots again, but I so want a miracle, not that I am worthy of one but I just can't think of leaving Matthew and Sarah at such a young age and my husband.  I want to watch my children grow into adulthood, get married, graduate from college, and watch them become parents too and me a grand mother!  I want to grow old with my husband and sit on rocking chairs on the porch remembering when.  I so want so much more out of life than 4 years of fighting cancer to end up dying.  You will have to forgive me due to I am writing this email out of reaction from my heart and not thinking with my mind.    Please understand I do not fear death for I know I am going to a wonderful place, but I just don't feel that 4 years from now at the age of 36-37 I am ready.  I know it is not my choice but God's but I am really having a hard time accepting this.  Maybe I am in denial all this time I have been trying to be brave and facing it face to face.  Okay I have grumbled long enough now.  Please as I said I humbly ask for your prayers.  Thank you. 

Joella C., 5/26/04

Hello.  I am 32 year old female who was diagnosed with stage IV colon cancer Oct 29th.  I was 38 weeks pregnant and was in severe pain so I went to the hospital thinking it was pregnancy related and they did blood work and then an ultrasound on my liver and came back with tears in their eyes and gave us the shock of our lives "Guys we have some bad news...we found cancer, it has metasized to your liver approx 80%."  This was not what we were expecting.  The next day I had my c-section surgery to remove my son then they removed a golf ball sized tumor from my colon and 2 lymph nodes and micropsically went to my liver and biospyed a tumor.  Everything came back colon cancer.  My son is healthy and cancer free.  The dr said my prognosis is 15-20 months.  I started chemo the week of Thanksgiving, 3 chemo treatments later had a scan 50% reduction in liver tumors from 60% to 30%, 4 more chemo treatments another scan ANOTHER 50% reduction from 30% to 15%.  He said my attitude is great.  My attitude is this:  Adapt, Improvise, Overcome, so we call it team AIO, I have t-shirts with Team AIO on it that we wear to EVERY chemo treatment.  I truly believe my determined attitude has A LOT to do with my success.  But I need the last 15% to go away.  I hate hearing that I am stage IV or "terminal"  Whatever.  I saw your survivor story on ACS website and now I want your book.  Thanks for the inspiration.

Joella C., 5/27/04

Thank you SO much I sent a check today in the mail to you.  I am so thankful I went to the ACS website and read your success story.  It truly gives me a new level of HOPE.  I have a great Dr who has according to him never seen anyone respond the way I have.  I had 3 chemo treatments of Five F/U, Leukorvin, and Oxyoplatinum and had a 50 percent reduction.  Then 4 chemo treatments later another 50 percent reduction.  I have gone form 60 to 15 percent of tumors.  I am now going to be put on CPT=11 due to the oxyoplatnium has caused me to lose all feelings in the finger tips.  The CPT 11 is completely taken my hair out, but I am like OKAY cancer bring it on show me what you have and I will show you what I have.  Do you have a good response of people wanting your book?  If and when you get down to NC we must meet. What a great way GOD is using you to help others like ME.  I am currently reading an excellent book called "HOW NOT TO BE MY PATIENT" by Dr Edward Gregan from the MAYO Clinic.  He is an oncologist and he is very honest in this book.  I would recommend it.  I have also read 'When God and Cancer Meet" by Lynn Eib.  Very very good. Short stories of cancer patients and their amazing strength in fighting this stupid disease.  I am not considered to be the typical colon cancer patient because of my age.  When I go to Chemo there are 19 chairs and I am usually one of the youngest there and when I go to the bathroom as the drugs are running thru me I always hear SOMEONE comment as I walk by "she is so young'  And yup I agree.  Tomorrow is my 33rd birthday and I am so excited.  Anyway I feel like I know you so I am very open.  Forgive me.  Take care and remember AIO adapt, Improvise, Overcome jc

Joella C., 5/29/04

Thank you.  You are an inspiration to me.  I have a gentleman who writes me poems about my journey.  It started out that every time I had chemo I would send out a mass email to all my friends so they could know what is going on.  Well my friend turned each of them into beautiful poems and he calls it Joella's journey.  I have asked him "in the end" if he would publish them and donate the proceeds to ACS.  I am going to send you some for fun.  So you have permanent damage in your finger tips?  Did you lose your hair?  How long was your "battle"?  I am so encouraged by your story.  I have shared your story with EVERYONE.  Thanks for being an angel in my life. 

Joella C., 6/03/04

I had mailed one of the audio CDs to Joella. Our daughter-in-law, Heather, selected the music for the talk.

OH mY where do I begin.  At the beginning I guess.  Of course you had Cannon in D as the back-ground music.  THAT IS MY FAVORITE piece of music.  I have listened to the CD two times now.  I am printing out your story and going to give it to my dr along with the CD to listen to.  I know he will enjoy it.  I am very very fortunate that my dr's goal is for me to live and not just prolong life.  He is I believe the best we have here in Charlotte.  I guess that is why 2 of the Carolina Football players go to him and now the Famous Tammy Faye Baker, and let us not forget the infamous Joella.  Thank you for coming into my life and kicking up my hope to the next level.  I always had hope but as Emeril Lagasse the cook says You "kicked it up a notch"  I will write more later.  Off to my Dr appt.  thanks,. jc AIO

Joelloa C., 6/29/04

Thank you for calling today.  You are so awesome and such an inspiration to me and I share your story, book and CD with many people.  Have a great and safe 4th 

Joella C., 9/24/04

Thank you so much.  You have been an inspiration to me.  I got a copy of my scans this time and am thinking about making xerox copies so I can put them up like you did.  I did not think I would ever be at the point where I could take a break from chemo.  When you stopped chemo did it feel weird?  I love my chemo and I fear I will miss it.  I feel good about my decision to have one last punch at it just to make sure it is as small as possible.  Thank you for your encouragement and believing in me.  So what have you been up to lately?  Keep me posted.

Joella C., 11/13/04

just visited your website.  Wow how it always inspires me no matter how many times I visit it.  Thank you thank you thank you.  I had a scan on Friday and results on Monday at 915.  Very anxious as always. Hoping for the best.  Will let you know.

Joella C., 3/19/05

I got the phone call.  We were at Disney World with our kids this past week.  I am going back into chemo on Monday the 21st.  BLAH.  I have been on a 5 month break.  Back to Oxyaplatnium, Lekovorin, 5-FU and Avastin is being added.  I really dread going back into chemo. 

GUESS who I got to meet? Dodie Osteen.  You wrote about her in your book.  She was married to the late John Osteen, a Pastor of Lakewood Church in Houston Tx.  She had liver cancer and had a miraculous healing.  Remember?  Well I read about her in your book 1st, then I was given her book "healed of cancer" by a friend.  Then I saw her Son on tv Joel Osteen and have been hooked on him.  Well he came to Charlotte.  HE was having a book signing at Wal-Mart so I went to it.  She was there signing his book too.  So I told Joel I was fighting cancer and he said "take her to meet mother" to the security guard.  She hugged me and prayed over me and cried with me.  I told her about you.  

Thanks for checking on me.

Joella C., 12/3/05

Hello dear friend.  How are you doing/feeling?  What is the latest with you?  Chemo is kicking my butt.  Oxylaplatnium/5-Fu/Leukovin/ Avastin every 14 days. Taking a toll on me.  I have been doing this for 2 years and at times I think I am "done" and ready to "give up" but then I think of YOU and I look at your book and I just think "he beat the odds GREATLY SO CAN I"  You are a huge encouragement for me.  I keep reminding myself of your situation.  I am SO thankful for the ACS posting your success story and for me getting your book and getting in touch with you.  PROMISE me if you are ever in Charlotte area you will call me/visit.  Let me know what is going on with you my dear friend.

Joella C., 3/30/2007

I think of you often as you are a HUGE inspiration to me!

Jeff C., 2/20/09

I just finished reading the manuscript and my faith has been strengthened. You’re quite the inspiration and I'll pass your words on to many.

Chris, June 18, 2003

I'm sorry I haven't replied yet, and yes I did get both responses from you. Thank you so much for those. I've just had my hands so full with my friend. She was beating the cancer, gaining tremendous ground, then hit some personal problems that have been extremely draining emotionally and she's battling to keep her will to continue fighting the cancer.... I am all she has for support to help her though this and she feels like a burden to me so, at times, she pulls away from me, too, so I have been battling to stop her from pulling away. Right now I am scrambling for money for a plane ticket to just go and be with her... if I can do that... and get there soon... maybe she still has a chance to regain her will.... I KNOW she can beat the cancer... I have no doubt... but as long as she has no will or fight... and won't try.... all could be lost.

I have a major project in mind and want to get more info from you, as I first mentioned, but I can't focus on that project at the moment because her life is at stake and I have to focus there until such time as she regains her will again. She is such a special lady... I'll do everything within my power to help her.

Anyway, you take care, and know that I deeply appreciate your letters and your concern. Speak to you soon.

Kellie C., 2/8/09

Thank you so much for your reply, I would really appreciate if you could send me all of them, they all sound so inspiring!  I'm not comfortable with it being free though, so could you let me know how I can at least donate some kind of contribution to help out.  I have started a portfolio for my mum.  Each time I come across something inspiring and positive while googling etc, I print it out and put in the folder.  I have also added poems and pics of things she likes i.e. Dolphins.  I have even put a little story I found about you in there!  Mum can add to it when I give it to her.

I live in Stanthorpe, Queensland, Australia.  My mum is about 5 hrs from me, South, in Kendall, New South Wales.  Not sure if you are familiar with the geography of Australia, but Queensland and New South Wales are States, Stanthorpe and Kendall are Towns.  My 2 yr old son and I will be driving down to see her tomorrow, we have a business, so hubby has to stay home.  Mum starts first chemo tomorrow.

I told mum about how you got print outs of the tumours and scratched away at them.  She's not sure they will give her a copy.  I will check this out.  I have been telling her to visualize them shrinking, blasting them with light.  She told me yesterday that she visualized a little man in there blasting them away with a gun - I told her whatever comes to mind.  Myself and a few others also visualize them shrinking.

Many thanks again Bob - you are truly an inspiration.

Melissa C., 11/26/07

I have just been pointed to your website by a woman who e-mailed me via i-village.

My husband, who is 40, has rectal cancer which has metastasized to his liver and pelvis.  He has been told that the median life expectancy is 2 years.  He is currently undergoing chemotherapy and is both responding well and coping well with the side-effects.

Our oncologist has been absolutely clear with us - there is, according to him, NO way that Chris will ever eradicate this disease.  It simply does not happen.  Today I met somebody who had exactly the same problem 10 years ago and is today completely cancer free.  Now I hear about your story.  I feel somebody is trying to tell me something!

I would love to read your book/listen to the CD.  Please, please, can you tell me how to get hold of it?

You may just provide us with the new hope we are looking for.

Sue D., 4/16/09

Thanks so much for the book. The amazing thing is that it voices most of the things I have been thinking. I would love to be able to talk through some of it with you, but distance prevents that. Maybe some time you’ll be in our area. Two things I found very interesting:  As you wrote, “If life is truly a Gift from the Creator, we should honor it and fight to sustain it.” This gave words to thoughts I had that I didn’t know how to verbalize. The second is that the list under the Margie Levine story is fascinating. I can already relate to most of them and have started on the remainder.

When this all started, I felt so hopeless. Now I’m ready to fight. Stage IV rectal cancer with numerous mets to the liver isn’t the greatest, but it is the hand I’ve been dealt at this time. I plan to read your book more closely a second time. I’d love to stay in touch and glean any other wisdom from you that you may have. Thanks again for your time. Best wishes.

Sue Drost

Vicki F., 1/26/09

Thanks Bob for sending the information. It is very insightful and makes a lot of sense. I have never been one to just sit back and let someone tell me how to live my life and this has not changed that. I told my Onc on Friday that we are a team and that is how I approach this, he has ideas, I have ideas and we put them out on the table and discuss them. I have also never discounted the power of God and the power of the human spirit. Maybe that is why I have remained so calm and positive; it is a combined attack and one I intend to win. As you say, I have way too much stuff I want to accomplish before I die and I intend to do all of it!

Thanks again!

Tom F., 7/24/09

The files came through.  I printed them out for my mom and uncle.  I was able to read the first 32 pages last night, and can only say that I am as inspired as probably every other person who had the chance to read it. 

Although she has not read it yet, when I told my mom about the book and gave her an overview, she was very excited.  We discussed how books like yours should be available to the hundreds of patients who go through the 'assembly line' of

treatments at the Fox Chase center, where my mom is getting treatment.  As you state early in the book, there is not enough hope associated with this disease.  I felt from the beginning of her treatment that the TV programs, the pictures and the books available at Cancer Centers should all be highlighting people like you.  The fact that one person can defeat the disease, should give hope to millions.  Every Oncologist in the country should be required to read your book and suggest it to their patients!!!

OK, off my soapbox now.  Thank you again! 

Tom F. & Family, 7/28/09

Thank you again for the inspiration. I am sorry I cannot write the true value of the book on the check. Hopefully word will spread and you will be showered with the love you earned.

Tom F., 8/2/09

You are very welcome!  But I should be thanking you.  My mom has read your book twice now.  She has had a positive outlook from the beginning of her diagnosis, but your story has given her more hope. Thank you!

Judith F. in Israel, 7/25/06

I read your book. I'm impressed of the similarity of our conception about the fighting of the cancer and also I did some of your advices.

I'm feeling myself living in the house of cancer like you.

My experience is too recent, since January 2005. I think I was given a 2^nd. Chance to live different and I took it.

Sometimes I feel I lost my faith when I think on my next blood test  and I'm not sure that all I'm doing can change the things.

I try to "get up and be in the race again" when I remember myself that what's important is what I'm doing now.

Thanks again

Manuel F., 9/17/07

Dear Mr. Vandegrift !

I am a 39 year old German working in China. My mother was diagnosed with colon cancer (liver mets) this May. She had surgery the same month and is now on chemotherapy (Xeloda). Every doctor is telling her about bad statistics. I found your case via Google and told my mother about it. It was the first time in months that I saw a smile on her face.

I heard that you published a book about your experience. I would be interested in translating your book into German. It would be so important that more elderly Germans here that there is a chance despite of what their oncologists say.

best regards and many greetings, Manuel

Manuel F., 10/5/07

Manuel asked if he could transcribe the book into German for his mother and other cancer patients. I emailed the “Purt Near” in addition to the book.

Dear Bob!

I just finished the translation of A secret - Purt near.doc

Please find the German version attached to this email. It was a real piece of international cooperation. You (from the USA) mailed it to me in China. I translated it and mailed it to a friend in middle Germany. He printed it out and mailed it to my mother in Northern Germany. She finds it extremely encouraging and reads it every day.

I have to do the translation next to my normal work. I am using a translation program which helps me with the translation. Unfortunately this program can not handle PDF files. Would it be possible for you to send me a Word version of your other books? I would love to do German versions of the books too.

Best greetings from Beijing, China and Heide in Northern Germany, Manuel Fries

Manuel F., 10/23/2007

Hello Robert !

Thank you very much for your email. My mother is doing better. She even gained weight. She is painting and reading my first translation every day.

As soon as the book is done, I will mail you a copy.

best regards and many greetings, Manuel

Manuel F., 11/27/2007

Hello Robert !

5 minutes ago I finished the first draft of the German version of your book. I have to do some proofreading and some word checking and than I can mail you the first working copy.

Germany has a government run health system which is probably a little better than the British NHS but maybe not much. In the German country side, a lot of patients in Germany will love your ideas but as a German I have to say regretfully, that we still have a certain number of oncologists who are only pushing through with their treatment and do not allow many questions from their patients. They want to be in control of the situation. Because of this, your patient empowering approach is so important. But I have to be very careful with my work otherwise I will really get my rear end kicked by the German medical establishment. Because of this please kindly allow me to check  with you the following words, word usages:

a)

Tracings - do you mean the established medical term or can see it as an expression you have coined by yourself.

 b) V K Strategy

c) kinesthetic feelings

Thank you again for your book. My Mum loves it already, she calls every day and asks me to read a little while I am translating.

many greetings from China, Manuel

Manuel F., 12/3/07

Mein Heim ist im

Haus des Krebses

Hi Robert !

The first draft is printed. I already proofread it and have already input the corrections into the manuscript. I think this week I will be able to mail my mother the first copy, printed and bound in a copy shop in the Haidian District of Beijing not far away from the Peking University.

As soon as I snail mail the printed copy to my mother, I will mail you a copy too. It was probably the most meaningful translation I have done so far. Thank you so much for sharing your experience.

I will continue to polish the German version in the future. Some friends, my own virtual team, in several countries, are already helping with the project.

Finally I have a little request I would like to come forward with. In your book you mentioned a meditation tape Mr. Conlee has made for you. Would it be possible to obtain a copy, tape, CD or digital format, whatever is convenient for you.

best regards and many greetings from China, Manuel

Manuel F., 12/19/2007

Hello Robert !

I am in Germany now and my mother is reading my translation of your book. My mother is strongly suggesting that I find a way to publish the translation as a book in Germany.

many greetings from Northern Germany, Manuel

Manuel F., 3/16/08

Hello Robert !

I finished the book. It will still need some polishing but it is already possible to give it to other people.

Together with a former professor of mine who is a two times cancer survivor I am considering of publishing it in Germany as a real book. The aim is to find a few personal sponsors which would make it possible to give it away for free.

To keep printing costs down, I wonder if you might allow us to publish the text only without the pictures of the lesions.

Besides this I am using contacts here in China to produce a special version of the 44 Bible quotes regarding healing. If I get my way, it will be in German and each quote carved on a strip of polished bamboo. I will give it to the priest in our local hospital in Germany as a gift to religious people like my mother. 

My mother is finally finding her way. I organized complimentary treatment of Chinese traditional medicine. Last week she had a follow up CT and the doctor confirmed that the illness had not progressed since the last CT in November last year.

The German media has shown several examples of anti cancer computer games especially for younger patients. That idea of yours was also very advanced.

All the best to you and your family, Manuel

Ron G., 5/3/04

Greetings Bob,     

   The following bit of wisdom seems to reflect your approach closely.

   "To give pleasure to a single heart by a single kind act is better than a thousand head-bowings in prayer."

Saadi-poet-(c.1200AD)

   I know you have helped a lot of people, including me.

Phil G., 10/23/07

My wife, Judy, & I finished reading your book & speech on the computer & found it inspiring. We are trying to incorporate most of your coping mechanisms into our struggle. We still have to listen to your audio tape.

Last Friday I started my chemotherapy at The Robert H. Lurie Comprehensive Cancer Center, which is part of Northwestern Hospital in Chicago.  My oncologist, by coincidence, is a Dr. Benson, Dr. Al Benson, who, the oncologist at MD Anderson Comprehensive Cancer Center in Houston, TX, (we were there in late September), said was one of the top 5 oncologists in the world for colon cancer. We're impressed by him so far. I am in a clinical trial, which he designed in cooperation with the National Cancer Institute, & which is using state of the art drugs.

On Friday, I was hooked up for five hours to 4 different anti-cancer drugs infused in succession & then went home with a shoulder bag full of the last drug (5-FU) & a battery powered infusion pump which continued to pump the drug into my system through a portacath, implanted in my chest the previous week, for another 46 hours.  On Sunday morning, a home health care nurse came to our home &, after a lot of paperwork, disconnected the whole apparatus &, later in the day, I was able to enjoy watching the Chicago Bears football team pull out a miraculous victory.

We have attended some classes at the local Cancer Wellness Center, including one on guided imagery & relaxation.  We found it useful. We will soon each be assigned to a support group of people coping with this foul disease, either as a survivor or as a caregiver.

Can I call you in the near future discuss some of your strategies? I'm fighting as hard as I know how.

Best regards,

Hall Family, 8/31/08

I emailed you about 2 years ago and asked about your book.  At that time, my mother had just been diagnosed with Stage IV colon cancer w/mets to the liver and lungs.  I was VERY depressed and looking everywhere for encouragement.  You emailed me with a copy of your book, which I have shared with my sisters.
Just wanted to let you know that my mom is still around....She had surgery in Sept. 2006 to remove a portion of her colon and started chemo in Sept. 2006.  (She had oxaliplatin, avastin and Xeloda.)  Doc gave her a break in Spring 2007.  She had a nice Spring Summer/Autumn (even went on her first cruise!).  Then, in Dec. "things" got active again and she had to start chemo again in Jan. 2008.  Doc decided to drop the Oxaliplatin because the side effects are HORRENDOUS (younger folks have a tough time with it), so she just had the Avastin and Xeloda. 

Well....she fell and broke her shoulder on Father's Day (while we were visiting my dad's cemetery), so doc gave her a break.  Shoulder had to be treated non-surgically because of risk.  But....the orthopedist is amazed at her progress (as her oncologist has been too!)

She developed pneumonia a few weeks back too, but seems to have recovered nicely.

Anyway, she has just started the Xeloda/Avastin combo again.  She has not had a CT scan in awhile because of her broken shoulder but her last CEA count was about 16 I think.

So....she's doing much better than I anticipated.  The oncologist is pleased AND surprised. 

She is 79 years old and a real trooper.  We are going on another cruise in about 3 weeks.

Just wanted to write and THANK YOU and say "I hope you are doing well...."

Kathy H.
Lilburn, Georgia

The H. Family

Brad H., 3/10/09

Hi Robert

It has been one year today since my operation. Your last correspondence asked me how it had all changed me. I felt I needed to give it some time before I was able to categorically and accurately answer you.

Yes it has changed me, and to what I believe is a better person and man. I know I am more patient with problems and people, especially my family, which transfers to more understanding of others problems. I enjoy spending more time with family, and become quite teary eyed about the smallest things or memories. My work ethic has always been quite strong but find myself working harder in a shorter timeframe to accomplish the same things. I am trying to do more things I have not taken the time to do before. I am more aware of my mortality, still frightened of it, but becoming less so. I have never been one for remembering dates, especially those important ones, yet have taken to diarying all of those and acting on them.

Robert I have realized that my family is the most important part of my life and we are renewing our relationships every day. We are doing things together we have not taken the time for previously and seeing things and going places together we didn’t think we could afford to do, but are making happen anyway.

Overall life is good and continuing.

Thank you for your support and generosity in sharing.

I will keep in touch.

Regards,    Brad

Jenara H., 5/12/08

My name is Jenara.  My husband is 38-years old and has stage IV colon cancer. He has had 2 surgeries in which 8" of his colon, his spleen, gall bladder, 70% of his liver, 5 % of his stomach & 5% of his pancreas were removed.  He has been through 6 mo. of chemo (FOLFOX) with no success and has just begun a new regime (Zolfiri - using the oral Xeloda.)  He cannot tolerate it; he vomits a dozen times a day and he still has to work (to keep our insurance.)  We have 2 children - 11 and 4-years old.  I am afraid because he has little hope and HE has always been the rock in our family.  He was tough as nails throughout the first chemo although the side effects were rough; he had complete faith that he'd be AOK.  The second (stage 4) diagnosis following 6 months of aggressive chemo shook us to the core.  We had no doubts the cancer was gone and we were WRONG.  I'm not sure what I'm asking from you.  I just read your article and wanted to write.  Jason doesn't believe in any kind of alternative therapy; he believes whatever the doctors say.   Do you still sell your book? 

Jenara H., 5/13/08

I was very encouraged by your advice.  Thank you very much for your phone call and taking so much time to talk with me.  Jason is feeling more and more depressed and hopeless.  He started back on the Xeloda at a reduced amount and he's at work right now.  I would really like to purchase your book for him; are you still selling them?  I may have asked you already, but my memory isn't what it used to be.  Thank you for your help. 

Charlene H., 1/25/06

I do have a question with regards to your participation with the trial study of Xeloda. How long did you take it or are you still taking it?  My husband was diagnosed 7 years ago with colorectal cancer. He had surgery to remove the tumor and had a resection of his colon. For over six years results were good, however 8 months ago the cancer had spread to his lungs. He has been undergoing a heavy duty cocktail of chemo and has decided that since the Dr’s insist the cancer is terminal regardless of treatment they tell us that the only thing we can to is continue with this chemo regime to keep the cancer at bay as long as possible.  He has finally said “no, he can’t continue to feel so horribly” especially for an “additional 5 months” according to the blind studies I’ve read on these drugs.  Since he’s decided to quit chemo the Dr’s are trying to convince him to take Xeloda, though not as effective in the long term they feel it will benefit him. What has been your personal experience with the drug?  At this point he is trying to go the nutritional route, he’s juicing and trying to keep as much fresh and raw as possible in his diet. He’s also eliminated meat from his diet.  He continues to feel poorly because he got a cold/flu before Christmas and can’t seem to shake it because the chemo has depleted his ability to fight it off.  However mentally he is feeling much better and looks forward to living a better quality of life off from the chemo. At this point he’s not looking for a cure but would like to live whatever time he has left out of bed, interacting with friends and family.

Pam H., 1/18/07

Thank you so much for your quick response.  My friends name is Angela.  I will contact her and make sure it is ok to give you her contact information.  A call from you would be so helpful.  She was told she has no chance of survival as soon as her diagnosis was made.  She has cancer in her colon and liver.  She started on some natural things which built her system up but then was told by the natural doctor that she needed something aggressive done as it was so advanced.  So, she has had 10 chemo treatments and that pump and she did very well...did not lose hair and only the last one gave her the burning hands but this Tuesday they switched her to a new medicine in the chemo.  She is not doing well with it.  I have not seen her at work at all this week. 

She is otherwise very healthy.  She is a vegetarian. 

You are so kind to offer to speak with her and I think that would be just what she needs now as she needs some hope.  Her last visit she was told the tumors did not shrink very much and she is not a candidate for surgery or any other thing they could do.  I think she might lose her will to fight since so many of the doctors offer no hope.

I will contact her today and hopefully she will agree to your phone call.  I would like the book and the tapes and am more than happy to pay. I can send you a check.  When you get the check you could send it to me.  I will ask her which she prefers.  I know she might not feel like reading and the couple of audio excerpts I listened to were very soothing.  I think that might be good for her too.  But the book would be good to have to go back and ponder on it. 

I will call her now.  We have snow here this morning so our work was cancelled at our college.  We both work as Sign Language Interpreters for the deaf.  So this is a good day for her to recoup from her treatment.  We don’t get snow much so everyone panics here and everything closes.  Thank you thank you...for your concern.

We live in NC in Raleigh.  That is the capital.  Your son lives near the mountains .. how nice.  We are a couple hours from the beach.  You are a very kind man. 

Jalane L.7/22/04

I just went to your website, not knowing what I would find.  Thank you for the encouragement.  My mother was diagnosed with colon cancer

metastatic to the liver in August 2003.  She completed 3 months of chemo and then had ablation therapy on her liver with a hepatic port placed for chemo afterward.  She has completed 2 cycles of 2 weeks of this hepatic chemo and has been terribly sick.  Unsure if from the chemo or from an infection.  She has become deeply depressed these past two weeks.  I'm unsure now if her illness is not more depression that physical

side effects.   She is going to have to be a fighter and be in control.  You have given me a way to tell her this by your story.

She is a beautiful 65 year old lady with much to live for.  I pray that she will be able to see that.

Joan, 12/25/2008

Hi Robert,

I received your beautiful letter. Would love to read your book. I clicked on cancer strategies and then books and CDs and read the introduction and saw a drawing of the scary home. My oncologist is treating my cancer very aggressively. I am taking Xeloda twice a day, five days a week simultaneously with radiation 5 days a week. The colon cancer is being treated with chemo and the rectal cancer with radiation. Yesterday, I completed my 4th week since the office is closed today and tomorrow. It was my most MISERABLE PAINFUL day since I started the treatment. The only position I felt comfortable in was lying down so I came home and went to bed. My husband got off of work early and drove me there. Our 11 yr. old son came as well. He understands that I am suffering and today is a little better because I know I do not have to go. The treatment lasts for 6 weeks and then I have to have a mediport inserted and will be on Avastin for about 3 months, I'm told.  My energy level is depleted and my appetite flew away. Nothing appeals to me, not even ice cream which I love so much. I am on a low residue diet and when I eat something I am not supposed to, like fried food, I am in agony. Since I did do that, NO MORE!  I am strictly staying on my low residue diet, I just feel "yucky" all the time.  The nurses said my abdominal pain is gas pains and my bottom is very red and sore from the radiation, which is why it is only comfortable lying down.  But your letter cheered me up.  We live in Florida. I noticed you live in Utah. Hope to hear from you again soon. 

Joan, 12/25/2008 (2^nd message)

Dear Bob,

I enjoyed your Christmas letter. I just got out of bed after spending the day in bed because of the pain in my rear end. So I watched TV and heard that Eartha Kitt died of Colon Cancer. Now I went on line to find out why.

She was ONLY 81. That's young these days. People are often living beyond 100 as did your mom. Not surprising. She was treated at one of the best hospitals in the USA. I was only able to find out that she was diagnosed 2 years ago, treated, went into remission and it came back and was then admitted to Columbia Presbyterian Hospital in NYC affiliated with Columbia University. How come this happened? I couldn't get any information as to whether she ever had surgery, chemo and radiation. But I get very concerned and unfortunately worry a lot. Can you shed some light on this and perhaps why she died. It is not unusual for someone in their 80's to be treated and live with colon cancer. My oncologist told me that after presenting my case to the tumor board at the hospital, and getting the report from the pathologist, it was determined that I am in Stage II which although curable, there is a high chance for recurrence.  The surgeon who operated on me said I am in Stage IV.  The 1st oncologist I went to said I'm in Stage III. And then I was led to an oncologist at apparently a very good hospital called Morton Plant who determined I was in Stage II.   I am 66 yrs old, very scared, married with an 11 yr old son who is our pride and joy. And I want to live a long, healthy life but I'm very scared. The internist that I am not seeing anymore because of his negativity told me and my husband that I have 2 years to live at the most and he was told I am in Stage IV. After that, I switched internists, because I did not like his straight forward candidness. He said only 1 out of 1,000 with my type of cancer survive.  My oncologist whom I'm with now still has not talked to my surgeon but promised me he would. But he said that talking to him will not change his course of treatment for me.  I was very nervous when the surgeon told me there are peritoneal implants. But my oncologist said he presented my case to a tumor board who disagree with him. However, he opened me up. Really, I don't know what stage I'm in other than right now I'm in the stage of discomfort, and pain. My baseline Pet Scan was negative. And they removed 26 lymph nodes, all negative. They are worried about the MICROSCOPIC CELLS which is the reason for the aggressive treatment. But I would think that Eartha Kitt would have been treated aggressively as well. I could not find out anything online. Also, originally they thought that one of the lymph nodes was positive but after the pathologist looked at it again, it was determined they were all negative.  Could you offer any opinion or shed light on why Eartha Kitt did die of colon cancer. All I learned is that she smoked but is there any relation between that and colon cancer. I'm a non-smoker so I don't know.  Fondly,  Joan

Joan, 12/25/2008 (3rd message)

Hi again Bob,

I just read “I believe”. And I am going to print it out and read it when I'm down, depressed and sad. It is uplifting. I did fire my doctor. I hated him when he told my husband and I that I had 6 months to live without chemo, but a year or 2 at the most with chemo. He also sent me to an oncologist that said I absolutely did not need radiation. The 2nd oncologist said that I have colorectal cancer and that I do need radiation. I can't believe that here there are 2 qualified MD oncologists that want to treat me differently. The internist that I fired said this is "garden variety" cancer. ANYONE can treat it. It is like me treating hypertension.  And then he gave us the GRIM prognosis. He said only 1 in 1000 live. My husband and I were devastated and paralyzed. I'm glad I don't see him anymore. But I need to forget about him and erase what he said from my mind. It's hard to do. After all, he is an MD internist, NOT an oncologist who deals with cancer EVERY DAY.  I'll probably download your book and read it over the week-end. I'm so glad you posted a comment for me. I need a buddy.  Fondly,  Joan

Natalia K., 3/10/05

My name is Natalia. I am from Montreal, Canada.

Our mother has a bile duct cancer with the metastasis in the liver. That’s what we have been told. They gave her 6 months. No way! On the bone scan of February 23rd, they have said that they found the. Metastasis in the ribs, it is very strange, because on the bone scan of February 9, it was no metastasis.

At that time, we have rushed the doctors to start the treatment, but they said, that there is no rush and the cancer will not spreading too fast.

They said that the cancer it is not operable and she is not a candidate for the transplant. They also said that the both side of lobes of the liver is blocked. She is 58 years old. She is dong chemotherapie now, but it was postponed because her legs and arm are swollen.

The doctors does NOT cooperate with us to cure her, but do everything to discourage us and put us down.

Can you suggest anything?

Marilyn K., 7/23/07

Good to hear from you and thank you for passing my blog onto others. Like you, I agree a positive spirit is an important component in fighting cancer (any illness). I think your story is a good example of that. Of course there are many survivor stories you could point to where positive thinking has turned a gloomy diagnosis around.  Of course, we don’t know what’s working the hardest do we, the chemo, the surgery, the prayers, the vitamins, the acupuncture, the laughter, the exercise, the diet, the love of friends and family, or the radiation. And so, I do it all. We are all different and so we need to find our personal cures but YES, more often than not, positive thoughts (beliefs, prayers) will bring you the things you desire. Ask the Dali Lama, or a good behavioral therapist. I know a behavioral therapist diagnosed with stage 4 cancer. She had 3 year old twins and refused to consider anything less than a full cure. I am sure her point of view was as powerful a cure as the proton beams aimed at her spine.

Julie K., 8/9/09

Thank you for sending My Colostomy; thoughtful, humorous, and hopeful. I am feeling more positive about things right now. I have continued to attend the local Ostomy Support group's monthly meetings. I have begun to appreciate the stories so many of the members tell, because many are long time survivors and so grateful for life. It is contagious. I see a counselor/psychologist at the hospital where I had surgery and received my treatments. She is very easy to talk to, and I am feeling more optimistic. I have resisted taking anti-depressants, but am trying one now as my blue periods were pretty pervasive this spring and summer.
  Periodically reading your other pieces helps on the blue days; they do make me smile and laugh. Knowing someone who has lived with an appliance for many years tells me I can do this. This spring I struggled to find a dress for my younger daughter's wedding in June that would hide my appliance. I did find one and was confident wearing it on a very happy day. My older daughter is getting married in November, and the sensitive saleslady who helped find the dress, has helped me select a dress for next wedding which I love.
I don't know if men have as much trouble finding clothes, but it can be trying for me, and contributes to my frustration.
  I hope I reach the point where I can be as accepting as you are, and able to share/help others. Thanks for caring,
Love and light to you and keep healing those around you! Thank you.

Wendy K., 9/29/03

Hi Robert

I just wanted to let you know that my sister lost the battle of life last Tuesday. You were such a support to me two years ago with your experience that I just wanted to thank you for being there in a time of need. Her cancer went from her bowel to her liver to her lungs. It is such a cruel disease. She went down the path of alternative medicine and I truly believe it gave her a much longer time. So again thank you for your zeal.

Kristen, 9/4/05

I am so honored that you replied to my email so promptly.  I know you are probably a very busy man and I am touched that you would take the time to write back.  I'm in the midst of reading your book that you attached, thank you so much.  I'm going to forward it to my brother as well as the copy of the talk you will be giving.  It will truly be an
inspiration to him.  He is still in the hospital but doing much better today emotionally.  I was finally able to talk to him on the phone for the first time since his surgery.  My whole family is very scared of this whole process but we have not given up hope.  We have heard of
many great strides in the area of cancer treatments and so we are being as optimistic as we can in these trying times.  He has a good source of friends in the area that are also keeping his spirits up and have been wonderful in keeping the whole family more at ease with the whole turn
of events.  It was certainly a roller coaster of events that have happened w/in just a week’s amount of time.

My brother's name is David.  I am also honored that you would be willing to speak with him or even go visit with him, without even knowing who he is.  I know you are a busy man and you may have more pressing things on your agenda then this.  I will talk to him and let him know that you are willing to meet w/ him or even talk to him.  I'm sure it would bring his spirits up to know there are others out there that went through the same trials and tribulations and recovered.  We are taking this one step at a time and he knows that we will be there every step of the way. His situation is such that he will definitely start chemo when he recovers from surgery.  Being as we're unfamiliar
with cancer in general, and also not being from the SLC area, we have many questions about the care he will be receiving during that time. 
Was your clinical trial in SLC itself and is it true that SLC is one of the major colon cancer research centers in the U.S.?  This information may be in your book as well which I have read only the first few pages.

Again, from the bottom of my heart, I thank you for your kind and prompt response to my email.  I will forward this to him and let him know our conversation.  Is there any way I can pay you for the copy of the book itself?  Please let me know.  I appreciate your kindness and you are truly an inspiration.

Chris L., 9/23/04

I saw this website in Catalyst and really liked it. I hope that I can be of help in contributing thoughts and my own experience with cancer.

     My name is Chris, I am 53 years old, a Child Psychiatrist, happily married and the father of 2 children.

I have just passed through the initial portals into the world of cancer treatment, so I'm pretty much a novice. I have head and neck cancer, that presented with cervical adenopathy. The primary site is a bit unclear although a microscopic 'in situ' area was found in the left tonsil. 'In situ' means that it had not infiltrated the local area which is a little unusual for a primary site. So I may fall into that group who live with another edge of uncertainty- 'metastatic cancer, primary cancer unknown'........at least it gives me some additional sense of definition.

Anyway, I particularly liked the article on the Magic Word-ASK. This became immediately relevant when I met with the oncology and radiation team yesterday. I had a modified radical neck dissection on September 9th and have only just felt that I have moved through the pain. I had to have another exploratory surgery to tie off leaking lymphatics ... I sense this is a journey with a few sign posts and many detours.

Anyway, the radiation team was pushing hard to begin chemotherapy and radiation on October 4th. I was aware that my weight was down 10-15 Ibs since the surgery, between the pain and the difficulty swallowing. However, I know I'm typically someone with a big appetite and I gain and lose weight quickly. It seemed to me that one way of offsetting side effects of radiation and chemo was to be in the very best condition nutritionally that I could manage.

This is when ASK became invaluable. I called the radiation oncologist and 'asked' for everything to be delayed a week as I felt I could benefit from increasing my weight and optimizing my hydration. No problem. So, I have another week to further strengthen my body in preparation for the onslaught. Thank you for such simple but such powerful advice.

Sincerely, Chris

Susie L., 3/16/2009

Thank you.. I have always played a major role in my treatment plan and have always had a positive attitude.  Anyone that knows me and works with me here can tell you I don’t look or act like a sick person and I don’t feel like a sick person and refuse to be one … I also have a lot of faith as well.  It’s just an up and down situation right now for me ... I try to be up more than down.

Again thank you its wonderful to find people like you who care and help others!!!

Susan L., 5/19/09

Hi Robert,

   Thanks for inquiring.  I downloaded your book and put it on my desktop as it seemed too cumbersome to print the day you sent it.  Your email reminded me to go back to it.

   I concur in many of your beliefs and philosophies.  Although I have not been given any date prediction of mortality, I believe (from internet research), that 50% of those diagnosed with my stage colon cancer will not be here in 5 years.  My response to that was to gear up and take reasonable measures to put myself in the survivor group.  BUT...here's the thing, I am NOT willing to make cancer the center all day every day of my remaining life.  Thus, I find myself making a bunch of lists of ways in which I want to be more alive in the time I have.  Think of it as my personal "bucket list" from the movie of that name.  Having all these goals lifts my spirits--also I am less reluctant to hang on to every penny since my dx as I will probably not live to be 90.  Before, I kept thinking that I had to be frugal enough to plan for that eventuality on my small pension (my mom died at 78 but I planned to outlive her because of my healthy lifestyle).  Now, realistically, I may as well spend my children's modest inheritance.

     Also, I have become the leader of my healthcare team.  I do listen to my oncologist but I am the only one who appreciates how friggin' sick I got on that first round of chemo!  Vomiting and diarrhea and intense fatigue for a month; I couldn't even concentrate on a TV show let alone exercise every day and carry on with a normal life.  I came up with an alternative with less side-effects.  I have chosen to use only the oral Xeloda and skip the IV Oxaliplatin.  I couldn't find that it would give me an extensive edge on longevity to use both and I figured that I'd rather be gone than miserable 100% of the time.  My oncologist was clear that HE did not recommend my idea as a 1st choice but was willing to go along with it.  Phew!  What a relief!  I know that I lost a few statistical probability points in survival from refusing the Oxaplatin but I also gained some points in being able to exercise and to keep down a balanced diet.  Living on Jello for 6 months is not a great idea in terms of healing.

     I've just today finished cycle 2 of the Xeloda and it was a breeze -- compared to the hurricane of the previous combination therapy.  I realize that many people cannot tolerate the oral Xeloda but I feel fortunate that my body seems able.  Without a PICC line and w/o the intensive side-effects, I have been able to work full-time during this last round.  I feel as if I got my life back.

Meanwhile, my "bucket list" continues to grow and I am energized by all of the things that I still want to be involved with.

    Thanks for your inquiry and thank you for taking the time to send me your book.  The more I read the stories of others, the more I see possibilities for how to be sure that my time includes quality of life.

     Susan

Anne L., 4/18/03

I wasn't able to return your call yesterday (too many kids in the house) and I am waiting until it is a more reasonable hour in Utah to try to reach you today. I am of course thinking of you, as I view Good Friday as an anniversary of sorts for you.

Scott and I received your book and are inspired and comforted by your message. (I know you don't really care, but we sent a check). Scott is eager to talk to you as well, so perhaps when I phone this afternoon, we can find a time that is convenient for you to talk to him.

He had a colonoscopy on Monday and a tumor was located in his rectum. The surgeon who performed the surgery informed him while he was still in the recovery room that there was no cure for him and that any measures we considered would be purely palliative. We had a rough couple of hours before we remembered that we knew we were going to learn the shape of "Goliath", that he is as ugly as we suspected, and that we have a slingshot armed with the stones of faith, hope and love.

The next day we met an oncologist who talked very very hopefully about the options and outcomes that are possible today. We are now entering this new land...

Our goals are to constantly deepen our faith, continue to count our many blessings, to find the doctor we can believe in as much as you believe in Dr. Buys, and to find the most aggressive treatment regimen that will sustain Scott's sense of well-being. I can't tell you how important your story has been to me, Bob. You are my symbol of hope. Thank you so so much for being one of my angels on earth!

Looking forward to talking with you soon.

God bless you.

Anne L., 12/1/05

Hello Bob!

Thank you so much for thinking of Scott. At this moment he is on a plane to Montana, where he is joining a good friend to hunt ducks and pheasants. He is managing, but I am sad to say that his tumor marker gave us quite a scare last month. He has gone through many different chemotherapy regimens, and between the last one (Erbitux, Avastin, and CPT-11) and this one (oxoliplatin, Avastin, and Xeloda), his CEA went from 150 to 430 in just two short weeks. He is currently stable at 370, but the disease is diffusely present in both lobes of his liver and is not operable (he never was considered a candidate for surgery). Chemo continues to take a greater and greater toll.

I wish I had more uplifting news! There is another stage IV colorectal patient we know whose results and prognosis resemble yours. He just comes into the doctor’s office occasionally for a prophylactic infusion, and has been stable and healthy for over 5 years. How are you doing? And what are you doing? Are you speaking and/or writing any other books? You continue to be a great inspiration to us, Bob.

Please let me know!

God bless you~

Anne

I spoke with Anne sometime later, Scott was doing well. He had been so impressed with the idea of mine about my Cadillac dream that he had leased a Lexus on a three year plan. At that time I believe Anne told me that Scott’s tumors were in remission.

Lisa L., 2/22/06

Bob, Thank you for contacting me. Sounds like you are the Godfather for colon cancer survivors and their families....  Dying has not been an option for me. However, fear gets in my way. I become afraid of losing a life filled with love and devastating my loved ones. I have an amazing family that gives me purpose.

My mother had stage 3 colon cancer 3 years before I did. She was 78 years old. Because of her having dementia, being hard of hearing, and living in a home, it was advised she not have chemotherapy. It could have killed her.  My sister and I decided not to have our mother go through chemo. They gave her less than a 25% chance of survival of five years. That was almost 4 1/2 years ago. My mother doesn't even really remember much about having gone through surgery. Her mind isn't in a place to think about cancer. She NEVER even used the word all through her own experience with the disease … however she knew exactly what she had. However, she is illiterate and had a very sad life. 

I really think I had the early stages of colon cancer when my mom was diagnosed. It was a very difficult time for me then.

May I call you and share my story with you?  I finished chemo on May 2, 2005. I can look your number up from the web site or please send it to me... I'd love to talk to you...

Stacy L., 1/12/05

My name is Stacy and my sister was diagnosed with the same exact cancer you were diagnosed with. She went into the hospital on July 14th, 2004 with abdomen pains. She was shocked when she heard she had cancer, and even more so only given 2 months to live and only being 29 years old. She first tried a homeopathic remedy from Mexico, and that got rid of the tumor in her colon. After that she deteriorated and was told to try chemotherapy in the States. So she went on Xeloda and is on her third treatment of it. Her liver and lesions have both decreased in size! She is still really struggling and I read your story on the American Cancer Society website. I was thankful to hear someone had survived with the same diagnosis, and treatment. I printed off the article for her and thought I would see if I could get your book for her as well. I think it would be extremely helpful to read through your experiences and give her something she can relate to. I try to be a good support system for her, but without having gone through the same thing, I cannot give her what she needs.

Can you please let me know if you have any more of your books so I could buy one? I would appreciate it. And any other advice for my sister or for me would be much appreciated as well.

I also wanted to say thank you for being a survivor and then writing about it to share with others.

Thank you

Malisa, 1/31/08

Bob,

Yes!  In fact, she told me that she felt when she was reading just the first several pages that you were reading her mind--the same thoughts, feelings, etc.

She is doing well so far and is thinking loads of positive thoughts — as she said, she believes in curing her body of cancer, not just aiming for remission.  We're all fighting through this thing with that goal in mind.

Again, thank you for sending the CD--we are all so very appreciative.

Paul M., 3/17/04

Paul here.  To refresh your memory: we spoke on the phone a while back after exchanging e-mails -- actually, it was my wife, Rebeca, who first contacted you.  I've got colon cancer that's gone to my liver (and I may have a small lesion on my lung).  I read your book and found it very helpful.

I just wanted to say hello and see how you were doing.  When we spoke on the phone you said that you had been off of chemo for a while and, if memory serves, you were going to get a scan sometime soon.  I have been thinking about you and praying for you.  In fact, you are part of my daily prayer/meditation/reading ritual.  I re-read a page or two from your book each day, along with a page or two of Margie Levine's book, as well as other cancer-related and spiritual readings.  Your words have been a great inspiration and lift my spirits daily.  I wanted you to know.

I hope you are doing well.  I was scanned a little over a month ago and the lesions have shrunk slightly.  The Petscan revealed a marked decrease in metabolic activity -- so, so far so good.

Paul M., 4/19/04

Bob --

Certainly I will pray for Thelma B. and will send her an e-mail, through you, as well.  I will compose and send it separately, right after I send you this one.  Glad to do it.  I feel great compassion for her, even though I know almost nothing about her.

I hope you are continuing to do well.  I had somewhat discouraging news last week.  I was scanned for the first time since February, and the tumors in my liver grew slightly, the one in my lung also grew slightly, and there is a small, new growth in the rectum, suggesting local recurrence.  My doctor is switching my chemo as a result.  He does not seem too worried since the growth has been minimal in all areas, but it certainly set me back a bit.  We had been talking about reversing my ileostomy in May, and perhaps cutting the tumors out of the liver as well.  Now, all of that has been postponed.

It was especially hard to hear since I have been feeling excellent, exercising vigorously most days, and I had assumed that my health was improving.  We just returned from a week in the Caribbean, which was marvelous -- snorkeled with my kids every day, and I was in a very upbeat state of mind.  My doctor says there are many drugs to try, including Avastin and Erbitux, both of which won FDA approval this year.  He is also participating in a number of trials of new drugs, of which there are many -- he tells me that around 100 drugs for colon cancer are in the pipeline.  So, I am hopeful.  We just need to find the right chemo or combination of drugs that will work on my particular disease.  After much mediation, prayer and reading (I still read a bit from your book each day) I am back on a positive footing.

I will sign off now and write the letter to Ms. B.  Keep doing God's work, Bob.  You continue to be an inspiration.

Syndi M., 7/24/08

My wife’s Aunt Rosalie came to our home in Utah a few days early for a family reunion. She told me she wished she knew who her mother used to go visit in Green Bay, Wisconsin in the early 1900’s. I told her that I would see what I could find.

A couple days later I decided who I wanted to call – it was a home in Wisconsin. Syndi answered the phone and I introduced myself and told her the purpose of my call. We talked for a few minutes and then she told me she couldn’t talk about it now because she was under a lot of stress – her husband has Stage IV cancer. I asked her where it had metastasized. Syndi asked me what I knew about this and I told her that I was a Stage IV colon cancer patient.

We talked for a while and she asked if I was an angel. How could somebody call about genealogy but results in talking about her husband and his cancer.

We have called and emailed each other since that first day.

The following email was sent to several recipients:

 Well... Good morning everybody!!!!!! As you know yesterday was the big test result day !!  We walked into Phillips office and he shook Rays hand and asked him how he was feeling... Ray said "great!" He put his arm over his shoulder and said " you should, your doing great" with a big smile. He couldn't wait to show us the pet scan on the computer. He showed the one from Jan. compared to now. Jan. scan of his liver was full of black spots, which were tumors,  yesterdays... Gone! The large black tumor in his colon (which is where this all started) is just a whisper of gray. It was quite a emotional moment for all three of us. Phillips looked at Ray and said "you are doing phenomenal! and I never use that phrase loosely".  Ray said "does this mean that I will be around for a while? and he said " Ray.. you will be around for a long time". I lost it and grabbed the poor man in his chair giving him a huge hug... he just laughed and told me it was perfectly okay when I apologized for my outburst. He knows how huge this is....  We are, however, not fooling ourselves about the seriousness of the whole thing. He told us that he can never say that the cancer is completely gone, but with continuous treatment, Ray should live as normal and productive life as we could ever ask for. Dr. Phillips just keeps saying "What ever your doing , just keep doing"  What do you think of that?  Pretty amazing right?   I just want to thank everybody for their prayers, positive thoughts and support... it is all very much appreciated... we know we still have a journey ahead of us, but having you all in our corner has  made this whole experience bearable. We are truly blessed to have all of you in our lives.. Thank you.. from the bottom of our hearts. Love Ray and Syndi

Syndi M,, 1/7/09

Syndi sent the following message written by their daughter. I was one recipient.

My dad, my HERO (your friend, brother, extended family member or Uncle) had an appointment today with his Oncologist to go over the results from the PET scan he had right before Christmas. This is the test which tells where the Cancer still is or isn’t there, and if it has or hasn’t progressed.

Just a recap first from my eyes: Just over a year ago, I sat in the hospital room that my dad was brought into after his Colonoscopy. In another room, the Surgeon had just told me, my mom and sister that he had Stage 4 Colon Cancer that spread to his liver. Now it was time for him to talk to my dad about what this meant. Staring and listening to each and every word the Surgeon said to my dad, he said that his odds were “1 in a MILLION”. It would literally be a “Miracle” to beat his type of cancer. He said he couldn’t guarantee he had much time and he should consider spending the rest of the time he has left doing whatever it is he loves to do most. He said “Ray, If you love to fish …fish. If you love to work … work.” Needless to say, there was not good news to rely on. To watch my dad being told he was going to die of cancer was one of the most horrible things I have ever seen. My heart was broken, it was the most devastating day of my life and the worst thing I have ever experienced. That day … I thought I had to find a way to say Good Bye to my dad and soon and I couldn’t bare the thought …

That being said, my dad, being who he is, decided to … “work”. We all continued on with hope he was doing the right thing, the treatments were right for him and were going to help prolong his life.  The other test results he has received were positive and things were on the up each time, but there were still areas of tumors that they didn’t feel would go away. They were shrunk and some gone completely, which only kept us all hopeful and from thinking the worst was yet to come any time soon.

So back to today and his follow up appointment from the PET scan.  The results were in fact Excellent!!!  He is officially in Remission. There are NO Tumor spots left on his liver or colon, all of them are gone and there is no sign of Cancer left!!!   This is Fantastic!

TO ME, THIS MEANS…. If he wishes to “fish”, OR if he wishes to “work”, he has time to fish……and work. It also means I have much more time to spend with My dad. I can’t tell you enough how extremely happy I am and how proud of him I am for getting to where he is from where he was not that long ago.

On the lighter side, he still does carry the cancer cells which created this monster to begin with, so he will remain on treatments and go about life as he has for the past year to hopefully stop it from coming back for as long as possible or HOPEFULLY forever.

Personally, I Thank you for your caring thoughts, kind words, support, and prayers. Today, we definitely proved, that together…we can win and truly ANYTHING is possible…..“Miracles” DO happen.

And…….Dad, you officially are “1 IN A MILLION”!!! 

Syndi M., 1/8/2009

Hi , YES you are my Angel... I truly believe that with all of my being... I am very proud and honored that you share our story. Please feel free to use my name. Sometimes names make a story more personable and touchable.... sometimes even more clickable.... 

    Our daughter is amazing. When I read her letter I just sobbed. Our youngest daughter Molly (18) wrote Ray a letter this morning that was equally moving. This has been quite a day … as you can tell he isn't much for verbal communication. I am surprised how warm and loving they are sometimes. It hasn't always been easy having a father like Ray but they still rally and I know he loves every min. of it. At xmas I bought the kids each a baseball cap and had them open it last. It has a navy blue cancer ribbon on it and it states "Supporting my Dad because together we will win" ... It was one of the most touching moments during this journey. I am so glad I did that. I thought of you while I was ordering them. He hasn't heard your second cd that I received from you yet. I have to wait until we head up north and I can trap him in the car again. When I have more time I would like to write you a long letter about my thoughts and belief's during this time. Maybe some of what I have to say may help some of your people. Cancer is hard and cruel sometimes and for those who may be living with a difficult person might find some of what I have to say comforting and feel less alone.. I am very very lucky.. I have a angel I can call my very own.  Syndi

Mirjana M., 9/19/06

Dear Robert,

You don't know me, but I was searching colon cancer survivors, and your name came up.

My beautiful little sister has colon cancer, she had the colon resection in April, but it has spread to her liver...she is stage 4.

She has been in chemotherapy since June. Last Friday she had the ct scan done again, and all her bloodwork. Her cea levels are at 29 right now, with lesions to the liver.

She has to make an appointment with the liver specialist, I can not think what they are called right now, actually it is a miracle I can think at all.

She is so scared and so are we. Who could have known that someone 30 years old can be going through something like this? My family is devastated, and I feel like I am dead. She is scared and researching, and we all know how bad all the stats are online.

She is afraid that the doctor will tell her that she is not a candidate for a liver resection,  and even if she has the surgery, she has read that maybe it can have a 5 year survivor rate.

I am just so scared, I hope and pray to God that she will have a little miracle. She is a fighter, always positive, but this has really scared her so much, that I feel there is something she is not telling me. My poor parents are just wasting away, my mom can not say her name without crying, and I feel so hopeless and helpless.

What is even harder is that she is in California we are in Indiana and Illinois.

My heart is aching for her, and I am scared to death. I try to be so strong for everyone in my family, but when I am alone I just lose it and cry like a baby.

Please tell me about your experience with the liver resection...please, I am looking for any hope that I can relay to my beautiful little sister.

Mirjana M., 9/19/06

Dear Dear Bob,

I am crying as I am writing this to you.

You just made my day with this. I will forward your email to my little sister.

I know that she will be happy to hear from you.

You are my hero. I hope that you live to be 105 and more. A blessing from a very religious country that I come from.

Thank you for writing back to me...I was so happy when I saw your email.

I have Bernie’s Book. I usually visit his site, but have not really posted anything there. Right now I am just living in fear.

I do believe in God.

Thank you so much and may God bless you for being an angel.

Mirjana M., 9/20/06

Thank you sooooooooooooo much. I forwarded your email to her too yesterday, she was so happy. She was just too tired, she had the full chemotherapy Monday, and it is usually but Thursday that she recovers. This following Monday she just has the light chemo, the Erbitux, so she is better. She also works full time at home.

She is such a little fighter, she has not quit working for one day. At first we wanted her to just stay home, but now we are so grateful for her to have this to get her mind off of everything.

She has been great so far. My heart breaks when I think how she sounded yesterday, I cried so much when we got off the phone with her. I don't know if she is hiding something from us, or maybe she is just reading too may stats.

She said, "what if the doctor tells me they can not do the liver resection, or if they do, I have read that there is no cure"...I just could not sleep all night. I hate to see her so discouraged.

Thank you so much for being the angel that you are. Right now she needs to hear from a survivor. I am so glad that God somehow directed me to your site. Thank you for everything.

She lives very close to Los Angeles ... she lives in Culver City. She goes to USC.

I just hope and pray to God that she will be ok, because this is killing all of us. She is like a little angel. Bob ... she puts everyone ahead of herself.

No one had cancer in our family. My great grandmother lived to be 114....why did this happen to my little sister at such a young age is beyond me.

Thank you a million times. Your email has made my day brighter.

Diane M., 6/6/08

You were our first glimmer of hope--- no, more than that-- more even than a ray of hope.   After our visit with you hope burned bright as the sun.  I wrote in my journal that evening, "A week ago we were in the depths of despair.  Today I am on the complete opposite end of the spectrum.  I am so full of hope and yes, even joy.  I feel euphoric."   I have read your book twice.   I will probably have to read it again---- and again----and again.   I have been shopping around for a doctor and finding it difficult.  Yesterday we saw a new doctor and our hopes were dashed yet again.   It seems I keep getting knocked down with each doctor's visit and each time it gets harder and harder to pick my self up.  Today I am feeling a little blue.  As a way to fight back though, our children put together a team and today and tomorrow we are participating in the relay for life to support the American Cancer Society.  On Sunday we are flying out to Chicago to one of the Cancer Treatment Centers of America.  Have you heard of them?  They have advertisements on T.V.  When I called them and ask if there was hope for someone with recurrent metastatic cancer they said, "Absolutely".   True I was talking to one of their "sales" reps and not a doctor but still.......  He told me about a lot of different cutting edge things they can do.  When I asked my doctor yesterday about them he was quite negative.  He just kept saying, "It’s all experimental".  Well, so experiment on me then.  Even a small chance is better than no chance.  So we will bank our hopes on this trip.   The treatment center is paying for our plane tickets and motels around the area offer great discounts so it shouldn't bankrupt us.

I also read a book called "Fighting Cancer" by Richard Bloch which gave us a lot of hope and fighting strategies.   But I wanted to thank you for all you have done for us -- for your book and your visit and giving us a fighting chance because of a little word called hope (and the three letter word, ask).  Please keep us in your prayers and we pray for you in your continued battle with this relentless disease. 

Diane M., 7/2/08

Dear Bob, I feel like our trip to IL was successful or will be or I hope it will be.  They do seem more hopeful there.  The doctor would not say that I could be cured.  She said by medical definition that cure means it hasn't come back and since my has.... well.... but she said they could try to put it in remission and how long it stays in remission is up to God but they will do everything they can.  I guess I cannot ask for more.  I had my first chemo treatment and was sick for a few days but then I have been just fine until today.  And for some reason today I feel a little nauseated and quite tired which frustrates me.  In IL we saw a mind body person to help with visualization and a herbologist and a nutritionist and a chaplain.  I like that they hit this from every single angle.

This past weekend we went to Yellowstone for a family reunion.  While at Old Faithful, the busiest place in the park, I got hit with a sudden diarrhea attack.  John took me back to camp to clean up and I cried and swore and cursed all the way back.   It seems like cancer just takes and takes and takes --everything-- my dignity, everything.  But I said, "Dammit, I will not give in to cancer!  It will not take this day!"  And I swallowed my pride and went back and joined my family.  I had been second guessing my decision to go to IL.  Or to fight anywhere.  It's hard to stay positive when you don't feel good.  Everyone has some cure or something to say about it such as, "I wouldn't take chemo" or "I would take the money you are pouring into fighting and take my grandchildren to Disney Land and go with John on that Alaskan cruise you've always wanted to go on."  or "If you have enough faith in God you won't need to take Chemo."  But after Saturday's incident I decided I will not give in to Cancer.  It will not win without a fight.  Every time it rears it's ugly head I will step on it and every time it knocks me down I will get back up.  But today I don't feel well.  I need a support group or something.  I need to do something.  Cancer has become my life, my career, my new cause.  I wish I could say with you that "I am not troubled that my home is in the house of cancer."  I am troubled.  Cancer lies under and on top of everything.  It wraps its arms around me and threatens to suffocate.  I feel like I am going crazy.  I can't think of anything else.  Cancer is always with me.  What should I do?  How can I get past this? How long did you do treatments?  What are you doing now to keep it from growing again?   How long is the fight?   Bob will you be part of my support team? 

And how are you doing?  Are you still dealing with gout in your feet?  You are in my prayers.  I hold you to the light first as a matter of gratitude that you have given John and I hope and second that you will have good health yourself and continue cancer free.

Diane M., 7/2/08

Dear Bob, Thank you.  We enjoyed your lecture and were buoyed up once again by listening to you.  John's sister Chris said she enjoyed your message as well.  She is going through a tough time right now and her son had surgery two weeks ago on his back but it didn't go well.  He is paralyzed and they don't know if he will pull out of it.  Chris felt like your message of hope was as pertinent to her as it is to cancer patients.

Did you get a chance to read my "book"?  Did I get quotes from you right?  And do you think it would be as helpful to cancer patients as your book is?    Now that it is written I don't really know what to do with it.  For me mostly it was just helpful to write it.  Now I have to search for something else meaningful to fill my time.  I have this sense that I should reach out to other cancer patients as you have but I am not really sure how to get started.

Well thanks once again.  It was good to see you again and to hear from you.

Diane M., 10/29/08

Bob, Thanks for the words of encouragement.  I am in the process of trying to start a cancer support group.  I wrote some ads and plan to put them in the paper and I did a flier that I plan to put in doctors offices, the hospital, the library, etc.  If I can get a group together I am not sure where to go with it.  What kinds of things should we do?  Do you have any suggestions?  I mostly just want to talk out feelings and receive and give encouragement.  I thought that cancer was my new cause.  I feel like there has to be some purpose in it.  My son told me about a coworker's father in law who was diagnosed with serious cancer.  He told her to have him call me but I said I would just call him.  I called him last night and thought he seemed grateful but this morning his wife called me and demanded to know how I found out.  She said they don't want any one to know about it and thank you very much but they would be just fine.  That kind of upset me.  I thought I was doing a good deed.  I don't know what God expects me to do with this but I have a need to reach out to others in this. 

And I do appreciate the art work.  Thanks once again.  I gave a copy of my book to my doctor here in Vernal.  I don't know if it will be helpful to anyone else but writing it was helpful to me and your book has sure been helpful to me.  Thanks for being my mentor and confidante.    Diane

Diane M., 12/4/08

Hi Bob, I put your book in the library at the cancer clinic in IL.  They seemed happy to receive it.  I finally got my copy back from a man I had loaned it to and read it once again.  It helps me so much.  My tumor markers were elevated and I was discouraged.  They put me back on xeloda but only a small dose because my diarrhea is so bad and my potassium levels were low.  I had scheduled a cancer support mtg. for last night.  There are no cancer support groups in Vernal and so I decided to start my own but no one, not one single person showed up.  Maybe I didn't advertise it well enough.  I had fliers all over town, in doctor offices, at the library and at the hospital but I didn't get a notice put in the paper.  Also it's kind of a bad time of year so I will try it again next month.  I had a lovely Thanksgiving.  All my kids were home except one.   How was yours?  Hope this finds you well.   Sincerely Diane

Diane M., 2/19/09

I am here at CTCA (cancer treatment centers of America).  I am doing well, feeling great.   I haven't heard from some of you for a long time and thought since I have some time on my hands that I would let you know how things are going.  I got my lab work done yesterday and my numbers were back up again.  Disappointing.  The doctor did a test for a certain gene to see if one of the drugs I have been taking will work.  Apparently if you have the gene the drug usually does not.  I have the gene.  I don't know why they didn't order the test before I took this expensive drug which dries out my skin like nothing I have ever experienced.  I had been on the drug for a month when I read an article in Reader's digest that if you have the gene it does not work.  So last time I asked my doctor about it.  It wasn't until then that she ordered the test.  It is so frustrating.  But just one example of why you have to take charge of your own care sometimes.  Anyway sometimes, rarely, but sometimes it does work even if you have the gene so my doctor ordered scans.  Also in December my numbers were up but the scans looked fairly good.  So........ I had to extend my stay here another day, maybe two.  I had a CT scan this morning and now I am just waiting and waiting and waiting some more to hear from my doctor the results and the game plan now.  If this drug does not work there is another option I can use.  Another drug caused nerve damage in my feet so it is no longer an option.  I worry that one day I will run out of options but for now they still have some things up their sleeve.  Angel is here with me as John is in South America doing a Guard deployment.  Since I did not have to have a treatment as planned yesterday, we took the train into Chicago and just had fun.  We put Johnita into the MTC two weeks ago and she is doing good.  She is learning Ukrain so fast.  In just two weeks, she can now testify and pray in Ukrain.  She is happy there though the days are long and stressful.   Some of you will be interested to know that Kay Potter is going to bring me on as a volunteer with the Forest Service.  My health won't let me work full time and Kay will have to work around my chemo schedules, my sick days, and my diarrhea but Kay said she could do that.  I am excited.  I went up to Green's Lake the other day just to walk around and I just love the place so much.  I think mostly Kay is going to have me do some campground programs but hopefully she will let me work Red Canyon and peaceful Swett Ranch some too and I am looking forward to working with my dear volunteer friends whom I love so much.   Ruby and I are babysitting my neighbor’s four grandchildren that she just got custody of.  I said the cancer may not kill me but these sweet little ones just might.  I am well past the age of tending kids and they are making me crazy but what can you do?  You have to step out of yourself and help others sometimes.  I am trying to start a cancer support group in Vernal.  First I have the need to talk about things with people who understand what it is like and second I have a need to reach out and help others as Bob has done for me.  I don't know how helpful I am.  He gave me so much hope because he has been cancer free for nearly thirteen years.  I am still in the midst of the fight so I might not be that inspiring but I have learned a thing or two.  Vernal TV did an interview with me and I didn't sound too stupid.  I'm not sure but maybe you can watch my interview on Vernal TV.  I don't know how long they hold them.  I don't have much else to say so I will close but please keep in touch. 

Diane M., 3/24/09

Dear Bob, I am back from Illinois.  My tumor markers had nearly doubled and that was discouraging.  All the more reason to come listen to you speak again.   I have had this terrible terrible cough and the doctor said it is because of the cancer in the lining of my lungs.  She put me on a cough suppressant but it isn't helping that much.  Debbie Spafford pointed out that the 10th of April is Easter weekend.   She won't be there but I have already printed out the fliers and stuffed them in envelopes for mailing.  Hopefully it will be alright and we can still get a good turn out.  Debbie won't be there so I am going to facilitate.   Looking forward to it.  Sincerely, Diane

Diane M., 8/5/09

This is Sheila, Diane's oldest daughter.  We wanted to let you know that she passed away last night.  And we wanted to thank you for being such a good friend and support to her.  You were one of her best champions; I don't know how she would have fought this fight without your help.  But she fought well and courageously, and we thank you for your part in that.  We also wanted to let you know that her service is going to be held this Saturday at 11:00 in the Vernal, Maesar Stake Center, with the viewing the evening before at the Vernal Mortuary from 6 to 9 pm. Again, thank you so much.

Sheila

Melissa N., 11/16/05

I'm sitting at work CRYING reading your speech, I think I need to wait until I go home to start reading your book. I have a feeling that you are going to make a world of difference in our outlook. We were positive but hit rock bottom a few days ago when they pointed out the new lesions. He just sits and stares at me and our two kids. That's not good for him, I
know what he's thinking about. I think giving him your book will make him
see things more positively and give him HOPE.

Melissa N., 11/17/05

I finished reading your book and absolutely love it! I don't think you're
off base at all, honestly. I believe that the way you think and what motivates you is a tremendous part of why you're still here and why many other people are still fighting as well. The message applies to so many other aspects of life, not just to those affected by cancer. You are truly an inspiration and will read the sections I have bookmarked over and over again. Thank you so much!

Melissa N., 11/17/05

I have been reading your book all morning, it's wonderful! I called my husband's doctor about a half hour ago and left him a message telling him how much I appreciate him being a mentor to Anthony and for giving him so much hope. He really has been the one to keep him going. When Anthony's oncologist called his surgeon yesterday to discuss the new scans, the surgeon immediately (from the operating room) called from his cell phone and told my husband not to worry that everything will be Okay. I came home and Anthony was smiling!

Thank you so much for being there!  Your book has made a tremendous change in me already.

Tucker N., 6/20/07

Dear Robert;
 
We received your information regarding colon cancer from John Conlee at Huntsman. My name is Tucker and I have Stage IV colon caner. Had colon resection and many lymph nodes removed. Been on several infusion treatments-11 total. The Avastin caused pulmonary embolisms in my lungs. An attempt was made in February to remove lesion from my liver, however the procedure was stopped due to 2 being too close to main arteries. Now I will continue with the 5FU and leucovorin only for 3 months and they will rescan the liver to evaluate surgery options. I was diagnosed 9 months ago. I would be interested in receiving any info you could provide to help me survive. I am 59 years old, 5 children, 11 grandchildren. We live in Willard but travel to Island Park a lot where we have a cabin. Also trying to travel via motorhome. Thank you for you time. Hope you well.
TN
 
 
Tucker N., 6/20/07

Thank you for the info.

Tucker was very excited to actually have someone tell him he wasn't going to die any time soon.

We are leaving this morning for Island Park and will be back night of July 1.

July 2 he has an infusion at Huntsman at 10 a.m.

Actually we could meet you in Bountiful that afternoon on our way home if that is convenient for you.

Will be fun and uplifting to get to know you I'm sure.

Thank you again for contacting us in such a timely manner.

Tucker and Connie

Tucker N., 7/29/07

You are so nice to keep thinking of us and send such an uplifting story.  We have an appt. on the 13th for a second opinion.  Also we are going to see a radiologist about interventional radiology.  Then we are planning to see Ben Kim.  We just got a little set back when Tucker was hospitalized with his pulmonary embolisms.  We went to chemo on Friday and he is doing fairly well.

Emotional well-being is something we strive for but is sometimes difficult.  We hope to meet you soon.  Maybe we could stop by on our way home on the 13th.  We'll call you.

You are really special to care about others like you do, even when you haven't even met them.

We look forward to meeting you.

Connie N.

Tucker N., 10/16/07

We surely did enjoy our visit with you and your wife.  The CD was delightful and inspiring.  We got all of Tuck's scans on CD but our son needs to help us print them off so we can make cards like you did.

We are really happy with Tuck's progress.  Last MRI showed only 2 tiny lesions down from 8 and his CEA is down to 3.7.  He had a scope and only had 1 tiny polyp.  All looked really good.  We are doing chemo every 2 weeks til the end of the year then will consider Xeloda.  We are planning on traveling a lot the next few months and into the winter.

 
Tucker N., 11/30/08
 
This is Tucker and Connie Nipko again.  We just have a question for you.  When you took Xeloda for 5 years did you take 2 weeks on 1 week off indefinitely?  Tucker has been on Xeloda for one year now and has only taken it 5 times this year which is about once every 3 months.  The doctor is very upset with him because he wants him to do it every 3 weeks which would have been 17 times.  When he does take it he feels really tired, a bit nauseated and terrible diarrhea and doesn't start to chipper up til the end of the third week--time to start again.  He has CT or MRI scans every 3 months and blood tests every 6 weeks.  This whole year his scans have been stable and his CEA is 3.5--stable also.  Just wondering how you dealt with the Xeloda and how often.  We know everyone reacts differently but most everyone we know that needs treatment goes in for the infusions.  If you get a chance, please write back and Happy Holidays to you and yours.
 
 

 Tucker N., 3/7/09
 
You are such a great guy.  I'm sure you have saved many lives.

Yes, the Schanes have been friends of ours for 2 years.  We met them at Huntsman.  He had colon cancer and unfortunately passed away a year ago at age 44.  His wife is still struggling and misses him so much.  Such a young couple with 3 kids.  He did work at HAFB.  You can visit their site at caringbridge.com visit Jim Schane.  
 

Tucker is doing very well.  He has been on Xeloda for 13 months but has only taken 8 times instead of 18.  He is just tired of feeling sick and having diarrhea.  Doc at Huntsman was upset so we left there and found new doc in Layton.  He said taking Xeloda every 10 weeks would never be effective because it has to stay in your system all the time.  Also Tuck has been taking Lovenox shots once a day instead of twice and new doc said that only keeps blood thin 12 hours then 12 hours blood is thick so he said quit taking both and monitor closely.

However, Tuck had an MRI about 3 weeks ago and it only showed one tumor in liver vs 8 a year ago.  Tuck has taken MANY alternatives to build his immune system and I really think this is why he has done so well.  He looks great.  His CEA is 3.8.  

New doc said no studies done on patients that live 28 months so he didn't know how to treat him.  He said people w/Tuck's diagnosis usually only last 4 to 8 months.

But, he is definitely doing something right.  End of the month we are meeting w/interventional radiologist to see if he can ablate the one tumor.

We are heading south tomorrow for a while.

Let us know when you will speak in Vernal.  I don't know if we can make it but we would love to see you speak sometime.

Keep in touch.  You are such a mentor.

Tucker N., 5/4/09

Yes, we were very unhappy with Huntsman oncologist from the git go.  Never gave us any hope really past 24 months.  He is chief of gastroenterology/oncology and is absolutely overloaded with patients.  Our last visit he told us Tucker had a mucinous carcinoma all up his abdominal wall which was very aggressive and there wasn't much more he could do for him.  Tuck told him he had the wrong patient so he went to his computer and realized he'd messed up but never apologized.  Tuck had been taking Xeloda about once every other month and doctor said that was just like taking a placebo.  We then found a doc in Layton who is much more personable.  However, the surgery was done at Huntsman.  This was liver directed therapy--radiofrequency ablation kind of like microwaving the tumor.  He will have a scan in a month to see if it was successful but surgeon is optimistic.
Tuck hasn't taken any Xeloda in 6 months and is looking better than I've seen him in probably 13 years.  We will just do scans every 3 to 4 months and hope for the best.  Tuck has taken tons of alternatives.  We are happy.

Tucker N., 6/8/2009

Just to let you know Tuck's MRI is perfect.  Surgery successful and there is "no evidence of disease".  Now MRI and CEA every 3 months for 1 year.  You are such a mentor and our hero.  Hope you are well.
Love,
Tuck and Connie

Kelley P., 5/20/09

Thank you for touching base with me, I really appreciate it. I did receive the writings you emailed me, and I found them very inspiring. Thank you for sharing them with me, I feel understood at a different level when I read your words. Things are moving along nicely with me, I have another cat scan in June to see where we are but so far the tumors in my liver have shrunk 75% in the last 9 months. Keep your fingers crossed for me!! How are things with you? Looking forward to hearing from you.

Phil, 3/23/08

Dear Bob -

It was good to hear from you.  I have just started my third round of chemotherapy.  Each round consists of four treatments with each treatment happening every other week.  We (my wife Judy & usually one of my sons) go downtown to the Robert Lurie Cancer Clinic in Northwestern Hospital and get blood work done & then I get infused progressively with 3 cancer fighting drugs.  This takes about 4-1/2 hours.  I'm then hooked up & go home with a portable infusion pump & a shoulder bag containing the fourth drug, 5-FU, which you are probably familiar with.  This infusion goes on for 46 hours & then a home health care nurse comes to our home & disconnects me, takes my blood pressure, pulse, etc.  She comes the following week to do some blood work & generally monitor me.

After the fourth treatment in each round, we go back to the hospital for CT scans of my chest, pelvis & abdomen.  The next week we have a conference with my oncologist to discuss the CT scan results.

Thus far, I have had two scans, each showing good progress.  The first scan showed a 30% reduction in the spot in the lower left lobe of my lungs & a virtual disappearance of the two spots in my right lobe.  These spots were very small to begin with.  The one in the left lobe had been reduced to 6 x 9 millimeters & the other two were down to 1-2 mm.  The tumor in my liver was reduced by 60% to 5.4 x 4.1 centimeters.

The second scan reflected an additional reduction of the one remaining spot in my lungs by 35%, down to 5 x 7 mm. The other two small micronodules had not changed & the report stated that they might be just scarring or non calcified granuloma (non-malignant).  The tumor in my liver had remained stable & there was no indication of any other metastasis anywhere else in my body.

Now that I have given you an update on myself, how are you feeling?  Are you getting any further treatments?

Judy attends a weekly meeting at the Cancer Wellness Center for caregivers.  I was attending a survivors group at the Center but there haven't been any meetings of this group lately. We both think that these meetings are helpful.

Let's keep in touch,

Malisa P., 12/31/08

Thank you so much for writing me back. I was struck by the reviews of your book mainly because it appears to focus on LIVING, which as my mother has experienced the doctors sometimes just seem to focus on the dying aspect. She has a great spirit of life and living but with the reappearance of her cancer needs all of the positive reinforcement that she can get. I told her about your book and she is very interested and excited.

Again, thank you for taking the time to write me back. I’ve told Mom that 2008 is the year of “birth and rebirth”—she not only will be receiving a new granddaughter in the spring but our family also firmly believes that she will be embarking on the beginnings of a long life ahead.

Christy R., 9/30/06

Thank you so much for taking the time to call me Saturday and sharing your manuscript with me -- I read it and it's full of lots of wonderful ideas that I'm going to implement into my own life!  I'm going to pass a copy along to my mom -- I hope that's okay with you.

Would you mind if my mom called you?  She's been feeling really blue lately and she could use a chat with someone who has survived despite the statistics.

Thank you, again, so much for being an angel of light for everyone, including me and those like me who have a parent with advanced cancer.

With gratitude,

Regi, 1/14/09

Dear Robert,

Thank you for forwarding your documents and presentations. You are truly a living testament to going beyond body and mind to include spirit/soul. That is also my philosophy of life. Not only did I have the privilege to have a wise and caring father to lead me in that direction, but my experiences as psychiatry fellow in the dept of psychiatry allowed me to consolidate my beliefs and background.

I believe we all need meaning and purpose in our life, and that when we evaluate our life it is our own very personal and unique quest. Like I always tell my patients: I cannot GIVE you meaning; I can only help you explore within you where, how and when it might BE. 

I have found my latest comfort in a book called "Anti-Cancer: A New Way of Life", written by a psychiatrist, survivor of a brain tumor, who changed his lifestyle (diet and exercise) and what he refers to as his "terrain" (what I call the soul portion of our being). I have also found comfort in simpler books like: "What the doctor doesn't tell you about colon cancer" and other books by the American Cancer Society. I've found also "The Human Side of Cancer" to be comforting/soothing since in my mind I pretend that I can hear the voice of my mentor who wrote it;  she speaks the words to me personally. Before the diagnosis I was nurtured by wonderful books and lectures: "Man's Search for Meaning", "The Doctor and the Soul", "The Power of Now", "Necessary Losses" and the lectures of Eric Cassell (The Diagnosis of Suffering") as well as lectures by Robert Neimeiyer on end of life issues. On all of these ideas I built my fort.

I believe no one has been luckier than me... in having to confront this disease. I believe also understanding my own previous losses help me face this differently. Mostly I believe having a solid husband and loving family and friends buffers your questioning as to whether you choose to live ... or not. But, these are only my personal conclusions.  

I have lots more to say, but I am hoping to hear your thoughts and continue this exchange.

My best to you,

Regi

Maria R., 1/12/09

Hello Mr. Vandegrift,

I found out about your book and I want to get it for my husband who is in the advanced stages of colon cancer.  He's been doing fairly well but is getting pretty down with his treatments.  His doctor called the other day and said his cea is up again and he has to go for another cat scan. I'm hoping that it is something manageable. I think reading about your experience will help see that even though his treatments are tough, there is hope that it just might work and he can be cured or at least manage this terrible disease and continue to make plans and LIVE.

Please let me know how I can order your book or cd.

Thank you for sharing and giving so many people hope.

Amanda R., 4/29/06

My dad has been battling cancer for 2 years now. In April of 2004, he had been diagnosed with colon cancer that had spread to his liver. He had surgery and then took and was told the cancer was removed. Chemo and radiation followed as a measure to ensure that stray cells were destroyed. After a clean scan in December we were hopeful that his cancer was gone. Only 4 months later he was told the cancer was back. He was going in for surgery to remove cancer from his liver and spleen. They opened him up only to close him saying it was nonresectable. A year to 2 with chemo or treatments. I went onto the web that night, in hopes of looking for a miracle. I found you. Your story was truly inspiring. My mom and I are huge believers in the power of our minds to heal ourselves. Dad is not as confident, but I think after reading your story he sees more hope. I am wondering if you talk to people going through liver cancer about your experience? I would like to set up a call between you and dad so you could share your experiences and what worked for you. I think the liver scan computer game is an excellent idea. Were the scans you used from a CT scan or an ultrasound scan? How did you erase the tumours off with the computer? What stores are your book available at? Do you know of any new methods of treatment for liver cancer aside from self healing? I would love the opportunity to speak with you and even more importantly to have you speak to my dad. He is the father of 5 kids (6 initially, but we lost my oldest brother to suicide 3 years ago...only 1 year later dad was diagnosed with cancer. I know that has affected his health). The grandpa of 5...I just had my first child 2 weeks ago. We aren't ready to lose dad, and he isn't ready to give up. He's 55...with many more memories to make! Thanks so much. I hope to hear from you soon.

Barbara R., 1/14/04

Bob,

It is very nice to hear from you and very thoughtful of you to ask about my husband.  He is doing well on the Xeloda.  He is on the 2nd week of the 2nd cycle.  He has complained about sensitivity in his fingertips and toes, but hasn't experienced any of the redness or dryness.  I'm wondering if the side effects will remain this minimal.  He is pain-free right now, so hopefully the cancer is calm.  We meet with the oncologist next week.  Our biggest adjustment so far, has been his ileostomy acceptance.  We are learning new things each day with this appliance!  He has always been a thin man, but had lost a lot of weight since surgery and it's slow in coming back.  But I think we just need to be patient. 

I truly enjoyed your book.  Matter of fact I have shared it with a friend's husband who is having a similar struggle with cancer of the esophagus.  They are reading it now.  I think you had many inspirational thoughts to share, and I found many similar traits in my husband's determination to learn to survive.  I'm so happy I learned of your book.

I hope you are doing well.  And I thank you again for "checking-in".

Barb

Jeanine R., 5/27/08

Hi Bob –

You are remarkable.  I am so grateful for your time and insight; you have helped my sister, and me, by giving hope.  Please send me your current address so I can send you a check.  Your life and work is an inspiration and it would be an honor for me to be able to contribute to “seeding” your books for others.  I visit my sister every couple of weeks and will make an effort to stop by and personally thank you, as well; however, “thank you” seems entirely inadequate in this situation.   You are an angel in your own right. 

Warmest regards,

Jeanine R., 6/27/08

She is on a clinical trial drug, as well as the chemotherapy.  It has not been fun (as you know) but her liver has shrunk in size, so she is “responding” to treatment.  Your book and writings are very helpful.  Thank you.  She still cannot “face” looking at MRIs of her liver; she prefers to look at a photo of a “healthy” liver for her visualization therapy.  At first, I was frustrated with her and encouraged her to confront the cancer head-on by looking at it.  But, I realized that everyone’s cancer journey is personal.  She must deal with this in her own way….not my way or your way or anyone else’s way.  So, I try to be as supportive as possible and provide her with the love and encouragement she needs.

Thank you, again.  I still plan to stop by and meet you in person.

-jeannine

Susan R., 10/27/07 (Ontario)

I can't tell you how inspiring your website was to me last night.  My father has recently been diagnosed with Stage IV rectal cancer that has spread to his liver.  His prognosis is very similar to what yours was in December 1996 and February 1997.  My dad has always been a very positive person but such news is not very encouraging.  My name is Susan Robins and I am his only daughter.  My husband David and I have one son named
Mitchell who is the apple of my father's eye.  My mother and father divorced when I was in university.  My mom has since remarried and my dad lives with a lovely lady named June.  I have a wonderful relationship with both of my parents and their spouses.  My family is very important to me; the thought of losing my dad is unthinkable.  I can't think that way.  In order to deal with this I have to remain positive for my own well-being and that of my dad's.  He is at a crossroads right now.  He is not feeling ill at this point in time and worries that the chemotherapy will make him feel so sick.  He says why should he take chemotherapy if he is going to die anyway.  I am not of that belief nor do I want him to feel that he is surrendering to this terrible disease which claims so many lives.  I am shocked that doctors put so little hope into their treatments.  I know that my dad would truly be inspired by your book and I know it would help him to think differently about his future.   Please let me know if you have a book available.  I would certainly make a contribution to cover any expenses.

Muriel S., 4/19/09

It was really a nice surprise to see your email. So kind of you to think about us. First I must ask you how you are doing, and I hope you and your family are well.
I am happy to report that there is major progress , quite a miracle.
It has not been easy because of so many post surgery complications , from pulmonary embolism to a lung infection which had to be fixed with another surgery.
He is doing so much better now and is still undergoing chemo. There are good days and bad days.   The latest scans were very encouraging.
He will be sending you a note soon; He could not believe your kindness and the work you’ve been doing these past ten years to help and support other cancer patients.  He is a musician and being able to play again was really a salvation. He wants to volunteer at the hospital once the treatment is over.
The first three months were the hardest. Around me, people were really pessimistic and advising me to be prepared for the worst. Something inside me knew better.  
Your book, emails and thoughts definitely helped and I’ll never thank you enough for it.
There is a long road ahead but we are hopeful.
Please keep in touch and send the latest info you have.
I sent your book to the therapist Martin is seeing. I wonder if he contacted you. His name is Dr Passik.
I’ll be happy to help anyway I can.
Kindest regards,

Diane S., 1/24/06

Hi Bob-

You are too kind!  I am sorry that I did not reply to you in a timely manner, but I just got home from Washington, DC where I participated in the March for Life yesterday.  I am interested in having a bound copy of your book sent to my dad.  Could you tell me where to send a donation?  I will be happy to make one.  It seems a shame that a publisher will not pick you up as people's comments on this book are extremely positive.

Thanks for sharing that with me & please reply with your address so I can send a donation. 

Would you please send the book directly to him with a small note of encouragement?  I know it would mean the world to him to hear from a colon cancer survivor like you!

Mario S., 11/18/08

Robert;

My brother Roman has stage IV colon cancer.

No body gives him a chance to live. We humbly request your help and we ask you if you could give my brother a phone call. I believe that by him hearing your story in your own words will give him the strength to fight it no matter what anyone tells him.

Please reply at this email. I beg you to give him a call.

Please give me a call as soon as you can so I can give you any further information you may need.

God bless you,

Mario S., 11/28/05

Mr. Vandegrift;

I apologize for not getting back to you. My brother passed away on Sunday November 20 at 2:36 am.

He is not suffering and we will miss him dearly. If you could give me and my family some words of encouragement in this difficult time, it would be appreciated. God has given you life and the power in your books so you can help people continue with their lives even after a loss like we have had with our dear brother Roman.

Please write back.

Thank you for your prayers,

Mario S., 11/30/09

Thank you for you kind words.

I have had dreams about my brother Roman. In my dreams he is fine and tells me to let him go and that he is OK.

I believe these dreams are true, but my family blows it off and tells me that I should be praying real hard for his soul, which I am. So I keep these dreams to my self now. I am still having a hard time accepting the fact that he is actually gone.

I apologize for any inconvenience, but for some reason I found your website. If you could please let me know what I can do to make it easier on our family.

Thank you sir for your words of encouragement.

Emily S., 11/8/07

Good day. Hope all is well.

I am glad I decided to take today easy and surfed the net for a quick break from routine.

You see, my aunt is suffering from Lung Cancer and so the strategies to combat cancer have been intriguing and meaningful to me.

I am inspired by the excerpts from your book: MY HOME IS IN THE HOUSE OF CANCER.

I would like to inquire if I could purchase the book and CD and have them delivered to Singapore.

Please advise on how I am able to do that.

Thanks !

Victoria S., 1/6/09

Hello Mr. Vandegrift,

My father was just recently diagnosed with stage iv colon cancer with mets on both lobes of his liver at the age of 63.  It started as a small dot on his appendix with a preventative surgery procedure which turned into the surgeon calling us to let us know the surgery had been more complicated than expected, they had removed a large tumor in his colon and that unfortunately my dad was stage iv and maybe 3-6 months to live without chemo. I came across your website in one of my searches for stage iv colon cancer survivors and it was very inspirational.  I would love to obtain a copy of your book and also one for my dad.  I realize you may no longer have any books available, but if there aren't any left, I would love to get a copy of the CD.  Is it something that allows me to print and read as though I were reading the book?  Please let me know the cost.

Your story gives me hope that my dad may be able to beat this horrible disease.

I look forward to hearing back from you.

Kindest regards & best wishes for 2009,

Victoria S., 1/7/09

Hi Bob,

I just wanted to thank you for sending all that information.  I read the book last night and it was very inspirational.  I also read through the additional docs and those were quite helpful too - they inspire and give hope which is great for family members trying to cope and also for the patient with the cancer to wrap their head around all the stuff they have the doctors throwing at them.  You remind me a lot of my dad in the way that you deal with things and how you go about handling things - your positive spirit, and ways of coping with situations.  I hope my dad will read the information you sent me.  For the most part he doesn't like to talk about the cancer right now, he reminds me and my mum that he is the one who has it and has to deal with it.  I suppose that is part of the initial shock of finding out he has stage iv colon cancer - his father passed away at 61 from it. Your book gave me some insight into how he might be thinking and trying to cope with all the information and news that has been thrown at him in the last 6 weeks.  He was diagnosed on November 28, 2008.  It has been a very emotional few weeks to say the least -I flew in to be with my parents when my dad was about to have surgery and I stayed for three weeks to help out once we found out the news.  I flew home to NC and then flew back to my parents with my husband to spend Christmas and New Years with them.  He started his chemo this past Monday and says he is already starting to experience some of the side effects - hand-foot syndrome, tiredness and a bit of nausea.  He continues to go to work like normal and tries to keep his life as normal as possible and said he will continue to do so until he feels he is unable to. One of the drugs he is taking is Xeloda, paired with the Oxaliplatin. I pray for him and others and their families going through this everyday.  You never realize how overwhelming it truly is until you have a loved one going through it.  I continue to find search the internet for positive stories of stage iv survivors and try to fill my mind with positive thoughts and outcomes along with my prayers.  I feel the more positive energy he has surrounding him the better chance he has of winning.

Thank you for being such a wonderful person and helping me and so many others to feel more positive and hopeful that it can be beat.

I will definitely keep you posted on how things are going.

Kindest regards,

Victoria S., 6/25/09

Hi Robert,

I emailed you a few months ago, back in January.  I had asked you for a copy of your book which you emailed me along with some other documents and I read through them all - thank you.  I forwarded them on to my dad, but I never questioned him as to whether he read them as I know he was trying to process so much at the time and I wanted to leave it up to him.  My dad has been working his way through chemo since being diagnosed with stage iv colon cancer with mets covering his liver in November '08.  I'm hoping you can help me with some advice and also prayers would be wonderful too...

My dad was diagnosed with stage iv colon cancer with liver mets in Nov '08.  They did a resection on his colon, but they said the mets had covered his entire liver so resection was not an option at that time.  They advised he do 6 months of chemo - xeloda, oxylaplatin and avastin.  His CEA was 925 when he began, after 3 sessions it was 511 and when they did his last test after 7 sessions it was down to 200.  He just finished his last session today and his oncologist will retest his CEA on July 8th.

Everytime he saw his oncologist and surgeon over the last few months they commented on how well he looked and said that his liver felt like it was improving and that his blood results were good. He does look good - good color, weight, still has his hair - which he is very happy about.  The only major side effect has been from the Xeloda - hand/foot syndrome which has only affected his feet, but has gotten very bad the last couple sessions. He had a ct scan about a week ago and the radiologist said no further spread of the disease and that there was a measurable decrease in the size and possibly the number of lesions on his liver compared to his ct scan right after his colon resection in Nov '08.  We were happy with the comments and were looking forward to what the surgeon would say at my dad's appt today.

When he went to the surgeon today to review the results - the surgeon said that there wasn't much change and that he was not a candidate for a resection at the current time and told him he has about a year.  I don't like this surgeon - I haven't since the beginning, he has always been negative.  I will give him credit on my dad's colon surgery since there has not been a recurrence there and so far so good.  But, after my dad's surgery in Nov '08 the surgeon called my mum right after my dad's surgery before we'd even seen him to tell us my dad was stage iv and that he had 3-6 months without chemo.  It tore us to pieces because my dad's surgery was supposedly preventative with them removing his appendix because they saw a spot that when they biopsied was cancerous. He told my dad today to speak to his oncologist and to see what the onc recommends in terms of additional chemo and if so to come back to him in Sept to be reassessed.  I am so confused!  With all their positive comments before we thought for sure he was doing better.  Please help me understand a bit better what might be going on.

I look forward to any advice and words of wisdom you may have.

Warm regards,

Victoria

Doreen S., 1/6/09

Dear Robert,

I have only had the chance to read "Choose to Live”, "Mind", and "I Believe". I am not able to open because I have a mac that does not read a Word document. Would it be too much trouble for you to send those two in PDF form?

Regarding "Choose to Live', I found many things that resonated with me.

First of all, I agree that cancer patients need mentors. I have been doing that for people so that they do not have to struggle through cancer land like I did. Eight years ago I had a misdiagnosis, then a rushed surgery, and being naive to the medical system (I had never been sick), didn't know that I could seek a second opinion or thought to question my therapy. I wish now that I could have. I have however, had second opinions since then, especially when I am up against difficult decisions.

I have learned a lot along the way.

I knew in the beginning that conventional medicine wasn't going to be enough, and that I would have to nourish my body through excellent nutrition, exercise, seek the advice of naturopathic doctors to help with side effects, do energy work, and tend the garden of my mind and spirit.

I decided early on to take some advice I heard in the movie "Shashank Redemption" -- "either get busy living or get busy dying". So I refused to act like I was dying. In fact, when I first heard the words, 'you have cancer", my first thought was that I could now stop doing all the things that I did not want to do. I got out of a miserable marriage (and this was during chemo treatment). I left my job. I wanted to focus on my survival and on living the life I wanted. My life has never been better despite the fact that I still am stage IV.

I decided also to focus on the part of me that was well. I think of the billions of cells in my body that are doing an excellent job, and the cancer cells are only a tiny fraction of that. It is hard to not focus on those, they become this big looming monster in the mind. But when I focus on them, I feel terrible. And I don't want to spend any precious minutes feeling terrible. It could be true that our immune system, like you said, is impacted by our emotional environment. I don't know that for sure, but I sure know that I don't like negative feelings.

Jill Bolte Taylor, author of "My Stroke of Insight" has a marvelous strategy for derailing negative thoughts, which are really just circuitry loops that get stuck like a broken record. She says when her left brain starts to run the show she:

1) remembers something that she is passionate about

2) thinks about something that brings her terrific joy

3) thinks about something that she would like to do or pursue that she finds fascinating or would like to ponder more deeply

I use this technique, and it usually works (I call it the Jedi Mind Trick). I find my mind more vulnerable when I am tired or not feeling well. This is when I try to be aware of what my brain is saying. Sometimes I just have to tell it "STOP!"

Giving my mind a rest from negative thoughts and occasional meditation (being thoughtless--empty mind) has helped me to remain emotionally and mentally clearer when it comes time to make decisions. And some days I just decide that I am not going to make a decision today if I am not emotionally ready.

I truly believe in the power of love. I believe that LOVE IS GREATER THAN FEAR. I believe that in the spiritual dimension physical laws do not apply, therefore ANYTHING IS POSSIBLE. Science is beginning to prove this through quantum physics. This is what gives me hope, because if you hook your hopes on conventional medicine, well you know how well they have done on the war on cancer.

I believe in the jump-starts you talk about. Tuning into an activity that I enjoy jump-starts my joy, makes life vibrant, and keeps me in the present. Live outside of the present and I think you lose life force fast. And acting like I am going to have a future, and putting little carrots out there for myself gives me a goal to pull towards and a reason to do it. I LOVE how you went out and bought a Cadillac. Bold! MIne is that I always have future engagements (I am a vocalist) and that I never miss a practice or gig even on chemo weeks. I make myself go. This is my life and I am going to keep on living it.

I love this quote: A bird doesn't sing because it has a message. It sings because it has a song."

I have a song! And I want the whole world to hear it.

Tomorrow I start a new therapy with Erbitux. So on to another chapter in cancer land...wish me luck!

Doreen S., 1/9/09

Dear Robert,

I have some thoughts about the power of the mind. I have great belief in this, one of the first books I read after my diagnosis, was "Quantum Healing" by Deepak Chopra. What struck me was the story he recalled of a young boy who had a multiple personality disorder, and in one personality he had a severe allergy to orange juice, and in another he could drink it with no problem. What was going on there? Same biochemistry, different action. An "intelligence" seemed to be turning on and off the allergic reaction. This gave me the sense that this physical dimension is not all there is to life. Quantum physics is now starting to show that.

My inner voice has been telling me that chemotherapy will not be beneficial. I have had this sense for years, but continue out of fear. Also I thought that if I had tried everything conventional medicine had to offer, I would have left no stone unturned.

I recently had an interesting experience. A friend offered to pay for an "angel card reading" with a woman who is a medium of sorts. I was not exactly sure of what this was going to be, but I was curious. She asked me if there was anything I wanted to ask the angels. I did not tell her of my illness, but told her that I was on a path that I doubted and wasn't sure what to do. She drew 3 cards and put them face down, then turned over the first one. It was Truth and Integrity. She then said, "the angels want you to know that the path you are on is not working because you do not believe in it." I told her that I had little faith in it, because I had seen so many fail on it. She said that they told her to follow my inner voice. Power of the mind, yes? I then told her that I was afraid to. She said that I had a powerful ally in Michael the Archangel, and the next card she turned over was a picture of him.

It is a constant task to "tend the garden of the mind", and I work on this daily, sometimes moment by moment, re-training the mind to create new neuro pathways of belief. it is amazing how we get trapped into negative thought loops that run our lives. I have found that the more I live in my "right brain", however, the happier I am. It is a great state to be in.

Doreen

Oliver S., 8/29/04

Mr. Vandegrift,

While conducting some research on colon cancer I found an article about you. I want to say that I am truly inspired by your story and hope it can help my father get through his bout with colon/liver cancer. Please tell me what I need to do to get your book as soon as possible. I hope you will
ship to Canada.

Thank you
Oliver

Tina S., 3/3/09

Dear Mr. Vandegrift,

In early May of 2008 I was diagnosed with colon cancer.  It had metastasized to the liver.  The right half of my liver was completely involved and there were several spots on the left.  I was only 34 years old.  I have three small sons and a wonderful husband. I was terrified.

Then, I met my surgeon who was full of optimism.  My oncologist not so much.  Nobody told me I had any specific length of time to live, but they have said that the odds of beating this are pretty small.  Between May and this January, I had chemo to shrink the tumors as much as possible.  I had no bad side effects from the chemo (thank God), and I had surgery on January 7th.  I was in the hospital for a total of 4 weeks, two due to an infection caused by a leak in the liver.  All of my labs since I was released have been good except one.  Today I found out that my CEA level went from normal after surgery, to 10.  I'm still kind of new at this and I know that there are a lot of things that can affect the CEA levels, but it's still frustrating when you are expecting one thing and get something worse. I came home and decided to try to find some positive reinforcement from the internet and I found you.  I would love to read your book.  We are financially struggling right now, as you can imagine with my husband taking time off work to take care of me and the kids, but I think I should be able to send something within the next week.  I was hoping I could get a copy sent off before then though.

Thank you so much. It sounds like you have helped many people. I pray that you can do the same for me.

Sincerely,

Tina S., 3/4/09

Bob,

Thank you for this story.  It was more than I expected. I have a dear friend who has been pushing me to seek out alternative therapies including visualizing and meditation. She has also footed the bill for a naturopath.  I have a lot of good friends!  I am lucky too that I live in Oregon.  We are known for our "out there" ways of healing and staying healthy.  Many, many people around here have the same philosophy that you do.  I admit, I am one of those who in the past have scoffed at the "out there" ways, but after research and hearing stories like yours, I am coming around. 

I remember as a kid seeing a made for TV movie.  It was about a woman who had incurable cancer. She visualized that her cancer was a tree and she imagined that she cut the tree down piece by piece. Then, she imagined digging and cutting the roots out until there was nothing left of the tree. Her cancer was cured.  I believe it was a true story and to my knowledge, she is still alive today.

Thank you again for sending your book and for the encouraging story.  As I said, it was unexpected.  It's amazing how when I need encouragement the most, it comes from the most unexpected places. Coincidence?  I wonder......

I look forward to reading about your journey.  And I will keep you informed of mine.

Tina

Piers S., 7/13/06

Hi Robert,

            I hope this finds you well today.  You’re correct about Ben’s Game and it was released a couple of years ago.  I can speak for everyone here that feedback like yours is very meaningful to us; it means we’re on the right track.  It might be interesting to you to investigate a new genre of games called “serious games”.  If you’re familiar with Wikipedia there is an article on serious games there which also details various games, publishers, and so on.  If you’re not familiar and still interested let me know and I can walk you through Wikipedia.

            Game’s are definitely for adults, too, you’re exactly right in that thought.  Gaming appears to be an interest which is retained over time by those who enjoy gaming.  As the industry matures (and that first wave of gamers who were under 18 in 1980 or so) the average age of the gamer has gone up each year.  At present it is approximately 29.

            Your story is incredible, and I think illustrates so well that not all healing is done by surgery and medicines even though those things are very important for any serious injury or illness.  I know that I’d love to hear about the game you created with your CT scans, or even a hint of your current game idea.  If you’re interested in posting them as a thread or a blog over at re-mission.net I’m sure it would be an inspiration to anyone that reads your story.  Have a great weekend, Robert!

Heather T., 9/24/08

Bob, thank you for you quick response and offer to share information.  I would love to receive the CD and insist on paying you.  Your story is very similar to that of my husband - almost identical.  His cancer was discovered August 9, 2008, after he was rushed to the emergency room with severe abdominal pain.  His colon was resected, the cancer removed, but they found multiple tumors in his liver.  Like you, he was started on Xeloda and other chemo drugs, but my real hope is in a change of attitude and visualization.  I think we control more than we know with our minds. You are an inspiration. . . I have not been married a year, but hope to have many many years with my husband Greg.  Thank you so much for your help.  Heather    

Joyce T., 9/8/06

How would I order your book? I was diagnosed with Stage 3A lung cancer in November 2005. I had surgery to remove the lung, with good margins. All tests since then have been cancer free. I also underwent chemotherapy (worst experience of my life, I would not do it again) and radiation just as a precaution. My doctors are great and tell me they are "going for the cure".
However, I am having a hard time living with this post cancer stage. I'm
generally an optimistic person with a good attitude, but when I feel an ache or pain in my body, my mind goes wild. I read with great interest about your book and thought it might be helpful.

I'm thrilled to hear that you are doing well. I look forward to hearing from you.

Joyce T., 11/9/06

Hi Bob,

Thanks so much for sending me a copy of your book. I've read it twice now and I will probably read it many more times. I like your spirit,
particularly your attitude about death. I know that attitude is extremely
important and I, like you, try to stay positive even though the negative
sneaks in.

I did not understand what you mentioned in your email about "cancer coming back". I'm certainly hoping that mine does not ever. My mother had breast cancer and my father had renal cancer and they both died of other causes over 20 years later. Maybe I did not understand what you meant.

I am sending you via mail a small donation for the book. I hope this finds
you well.  I would love to hear from you or about your work.

Joyce

Alison T., 5/18/04

My mom has been recently diagnosed with colon cancer that has spread to 2 lobes of her liver as yours did. I'm so happy to see the outcome of your story. Can you tell me what your doctors did to help you fight the battle?

Much appreciated~
Alison

Brian T., 2/25/05

Just a follow up to say thank you for our conversation today. I've been exploring cancerstrategies.info and found it to be quite remarkable. I believe it will be helpful for my brother who is suffering from liver disease. I'm positive he can benefit by praying for others, visualization,
and asking questions as you describe.

Brian T., 3/14/05

I'm on page 28 of your book and am compelled to write down some thoughts before I proceed. As I've aged, I've grown to appreciate words. The way a thought is conveyed on paper is an art and you are very good at it. You've forced me to the dictionary four times with the use of ethereal, intercessory, admixture, and ecumenical. All words which I'm somewhat familiar with but wanted the exact meaning in which you used them. Thank you.
   Your writing encourages me. I plan to give this book to my brother who has been diagnosed with advanced cirrhosis of the liver. I found the subject matter of "My Home Is In The House Of Cancer" to be very interesting. Your book also encourages me simply because of your thoughtful, intelligent writing.

    I've read to page 52 - You quote from Norman Vincent Peale's book "Powerful Imaging". The quote describes something I discovered ten years ago when I put my faith in God. "There is a powerful and mysterious force in human nature that is capable of bringing about dramatic improvements in our lives. It is a kind of mental engineering that works best when supported by a strong religious faith."
     You remember when Mike and I were young men. I had to be the best at everything I did; competitive to a fault. I also refused to ask anyone for anything. That attitude stifled some of my abilities. It wasn't until I humbled myself when a new awareness altered the way I view the world. Now, I'm involved in writing a book about a man from the Special Olympics who is one of the most uplifting and extraordinary people I've ever met.

     I finished reading your book. A person does not have to have cancer to appreciate what you've written. My impression is that what you've said here is part of the spiritual awakening that is occurring in the world. Thank you for sharing your message. I continue to pray for my brother and, although you seem to be doing well these days, I'd like to pray for you too.

Donna T., 9/5/05

Thank you so much for the e-mail.  I've been reading your book to mom.  It is full of so much hope. It's a refreshing new outlook on our situation.
Thank you for your kindnesses,

God's Grace,
Donna Jean

Victoria, 6/25/09

Hi Robert,

I emailed you a few months ago, back in January.  I had asked you for a copy of your book which you emailed me along with some other documents and I read through them all - thank you.  I forwarded them on to my dad, but I never questioned him as to whether he read them as I know he was trying to process so much at the time and I wanted to leave it up to him.  My dad has been working his way through chemo since being diagnosed with stage iv colon cancer with mets covering his liver in November '08.  I'm hoping you can help me with some advice and also prayers would be wonderful too...

My dad was diagnosed with stage iv colon cancer with liver mets in Nov '08.  They did a resection on his colon, but they said the mets had covered his entire liver so resection was not an option at that time.  They advised he do 6 months of chemo - xeloda, oxylaplatin and avastin.  His CEA was 925 when he began, after 3 sessions it was 511 and when they did his last test after 7 sessions it was down to 200.  He just finished his last session today and his oncologist will retest his CEA on July 8th.

Everytime he saw his oncologist and surgeon over the last few months they commented on how well he looked and said that his liver felt like it was improving and that his blood results were good. He does look good - good color, weight, still has his hair - which he is very happy about.  The only major side effect has been from the Xeloda - hand/foot syndrome which has only affected his feet, but has gotten very bad the last couple sessions. He had a ct scan about a week ago and the radiologist said no further spread of the disease and that there was a measurable decrease in the size and possibly the number of lesions on his liver compared to his ct scan right after his colon resection in Nov '08.  We were happy with the comments and were looking forward to what the surgeon would say at my dad's appt today.

When he went to the surgeon today to review the results - the surgeon said that there wasn't much change and that he was not a candidate for a resection at the current time and told him he has about a year.  I don't like this surgeon - I haven't since the beginning, he has always been negative.  I will give him credit on my dad's colon surgery since there has not been a recurrence there and so far so good.  But, after my dad's surgery in Nov '08 the surgeon called my mum right after my dad's surgery before we'd even seen him to tell us my dad was stage iv and that he had 3-6 months without chemo.  It tore us to pieces because my dad's surgery was supposedly preventative with them removing his appendix because they saw a spot that when they biopsied was cancerous. He told my dad today to speak to his oncologist and to see what the onc recommends in terms of additional chemo and if so to come back to him in Sept to be reassessed.  I am so confused!  With all their positive comments before we thought for sure he was doing better.  Please help me understand a bit better what might be going on.

I look forward to any advice and words of wisdom you may have.

Warm regards,

Victoria

Beth W., 3/16/07

Bob,

My husband has thyroid cancer that has metastasized to his liver and does not respond to radioiodine. It’s behaving much more aggressively than thyroid cancer usually does. We’re hoping he’ll be getting into a clinical trial at Mayo next month. Otherwise, there are a couple of chemo drugs the doctors are considering. Meanwhile, we know that he’s got to develop his own strategy for defeating this thing. I can honestly say he’s never talked as if the cancer will beat him. We’ve been reading other survivors’ stories on Lance Armstrong’s website and on the American Cancer Society website, where we read about you. We’re very interested in reading your story. I did a little more looking on your website this morning, and I saw how to order the CD version of your book, so I put a check for $17.50 in the mail. That looked like it would cover the CD of your book as well as an audio CD. Thank you so much for sharing your experiences. I do believe that hearing how others have successfully faced their cancers is very encouraging to cancer patients.

Beth

Margie W., 3/28/06

Hi Bob,
I am glad I learned about the presentation and publishing you have done on this challenging topic in our lives.  I'm very interested in reading anything I can get my hands on regarding cancer as it has touched me and several in my family. I would very much like to purchase your book or CD or read it in whatever format it is in. Please let me know what to do.

Margie W., 4/3/06

Hi Bob,

I was able to access both. It is fascinating reading and I just finished it. I got several good ideas from it and I'm going to tell doctors I know what I've read about giving their patients hope even when they have to tell them they have advanced stage cancer.

Thanks so much. I'll reimburse you when I see you next time. I'm so glad you have published this to help so many people. It's important that people have ways to find hope when they're told they're going to die.

Margie Walters

Barbi W., 2/15/08

Dear Mr. Vandegrift,

I got through about 1/3 of your book tonight and completed your "Choose to Live," lecture just now. I again wanted you to now how inspiring your story and words are to me. I look forward to sharing them with my Dad. You sound just like him in many ways, and I know with time he will embrace the "choose to live" attitude. Right now he is so bummed out and frustrated with "constantly being harassed by all this fuss," and "is tired of being a human pin cushion." That is NOT the Dad I know and know he will fight. He just wants his life back and I hope that a sense of "normalcy" or "new normalcy" is right around the corner for him.

My whole point of this email is to let you know that these 2 passages by you are really beyond helpful and inspiring to me:

“ I decided early on when it comes to a positive attitude, the word “positive” is over spoken and under worked. ‘Positive’ must be an action word…not a description…and that is how it is normally used.”

That quote is absolutely brilliant and I will use that not only in my every day life, but in my Dad’s case too.

“We cannot separate love from gratitude. We can’t have one without the other.”

That quote helps me sum up the overwhelming amount of kindness, support, love, and prayers we have received from friends and family and I will be sure to pass this quote on to them.

Thank you,

Barbi

Theresa W., 5/24/04

Dear Bob,

I wanted to thank you and tell you that I received the book on Friday and gave it to Phil Sunday.  Thanks again for mailing it to me so quickly.

Before I gave it to Phil I did have a chance to read it.  I want to mention that fortunately I am not sick, but just having loved ones who have cancer, and knowing what they go through with this disease,  I must say that the book is truly inspirational! 

My husband and I listened to the CD together and he, who had a kidney removed due to kidney cancer also agreed that the CD alone was wonderful and also thought that it would be of great help to Phil.

I told Phil about our conversations through email and have forwarded copies to him.

Thanks again for your thoughtfulness.

Sincerely

Theresa

Pame W., 3/1/09

Dear Mr. Vandergrift,

I am interested in a copy of your book. My husband was diagnosed with CRC with peritoneal carcinomatosis in September and the most time any doctor will commit to is 16 months – we’re coming up on the half way mark and that’s not good enough for us! His positive outlook and his determination are amazing. I stand in his shadow; he is certainly a hero in my book. I would like to read you book and share it with others at our local Cancer Institute. Please let me know the cost and if you have a PayPal account, I can forward the cost via PayPal.

God Bless,

Pame W., 3/2/09

Good day!

You're good! Yes, we have a caring bridge site. I do a little writing there myself;
if you want to call it that. I try to give back to those who give to us
- either through prayer, thoughts, gifts, etc. I have a little "following" of about 40 people a day that ready my ramblings. I was so impressed by the title of your book that I couldn't wait to read it!
It's a direct reflection of my heart's voice. I hope to be relieved when Cancer moves to another home, however, being the realist, I already know that once Cancer moves in, it never really moves out. It may hide in the attic, or under the house, but it's always there...forever changing your thought patterns.

Happy and glorious Monday, Mr. Vandergrift!

Kim W., 3/19/03

I am very interested in purchasing your book My Home is in the House of Cancer. Should I send a check to the address on your web site?

My father was diagnosed with the same cancer you were. His colon cancer had spread to both lobes of his liver. That was February 2002. He went on Xeloda which held the cancer at bay for a year (longer than any other patient in the Minnesota area according to my dad's oncologist). The cancer has spread into his lungs. Last week, he went on the 5-FU, Leucovorin and CPT-11.

As you know the prognosis is grim, and I look forward to sharing your book with my dad to give him hope.

Hope you are doing well!

Glenda W., 11/3/05

I am an oncology nurse at our local hospital and have recently been working on setting up a new program called a Patient Navigator Program.
This is a program designed to assist and guide the newly diagnosed cancer patient through the complex medical system. I have been doing research on the internet and was fortunate to come across your site. I would like to have a copy of your book (hardcopy or paperback) as a
reference for our patients whom I will be coming in contact with. Can I
purchase a book or do you only have the CDs available ? I look forward to hearing from you and also reading your book.

Glenda W., 11/3/05

Hello Bob,
Thank you so much for your quick response and I am truly anxious to
read your book. We would be honored to have you as one of our guest speakers here at the hospital some time if at all possible. I did not receive any attachments with this e-mail. Again thank you and I also wish you well.

Glenda

Glenda W., 11/10/05

Good morning Bob,
I think both will be very useful and inspiring to those who don't believe that they can take control of their own life during this most difficult time. Thank you again for sending them to me.

Glenda

Sharon W., 8/24/05

Hello again, Bob --

Thank you so much for sharing your cancer experience and cancer talk with me.  It is truly inspiring.  Like you, I am a firm believer in the close connections among mind, body, and spirit.  Your story is one of the best examples of these connections that I have ever heard.

Sharon W., 8/24/05

I would like a hard copy of your cancer book, if it isn't too much trouble.  There may be some way of including parts of your story in what we teach to our first- and second-year medical students about mind-body relationships and about spirituality and medicine.

Stephanie W., 2/5/04

Dear Bob:

I think the CDs would be fine.  Should I just send a check to you or how do you handle that.

I heard about you and your book at the Cancer Wellness House in Salt Lake.  John Conlee is one of the facilitators of the Cancer Wellness group that I attend there.

I was diagnosed with a Chondrosacroma tumor just below the base of my skull and behind my nose last May.  I had a bi-frontal craniotomy to remove the tumor in June and 7 weeks of radiation starting in September.  So far, so good with the post operative CT scans, etc. so we are hoping for the best.  The tumor is not a common one however, so the medical community does not agree on treatment after surgery.  Also, there are no reliable statistics available as to survival, etc. as there are not that many of us to study. I've decided that that's OK since I think that statistics are for use with large populations and don't have a lot to do with me as an individual.

Thank you for your concern.  I am anxious to read your book.

Stephanie W., 2/9/04

Thanks, Bob. 

I don't know about being an expert or not.  I'm certainly not one.  I have lots of great doctors who have done a good job I think.  But the folks and books that get me from day to day right now are the other survivors.  Good luck with you site.  I'll be sure to check it out.

Thanks

Stephanie

Brenda W., 11/13/06

Bob, thanks for the quick reply.  I would like to order the actual book, to give as gifts. I would also enjoy a copy sent as email, and will certainly send something. Your story was enlightening. My boss, who is a physician , was just diagnosed with colon cancer at a young age. I, a nurse, have not had much personal exposure to cancer, but in this last month, have had  a lab tech friend also diagnosed , and two nurses with breast cancer. So I wanted to read myself and also share with them. Let me know where to send a check if ok.

    I hope this finds you doing well, and I hope to share your story with my boss and friend. Thanks, so much, Brenda

Brenda W., 11/13/06

Bob,   they all came thru, and I am reading away. I am the Brenda from Newcastle, but a South Dakota native at that. But i can tell you I enjoy NE, the " good life" state.  

     I am really enjoying your message, but what is the best way to convey that hope and attitude ? I have not got to read it all yet. Thank you, Brenda

Ian W., 2/26/06

Robert

I am writing from New Zealand.

My sister, Helen has recently been diagnosed with terminal cancer. We only found out 3 wks ago. It had started as bowel cancer, she has a 3cm tumour (which at this point they have decided to not operate on) and the cancer has spread to her lymph nodes and her liver.

She has commenced on the Xeloda chemotherapy. Has had 3 wks and about to start on next 3 wks soon. Then they might give her radio….plus there is a chance if things went well they could operate on the tumour later on. Prior to the chemo her stomach around the liver area was very blown up but this has now come right down.

She has been sick quite a bit and also getting diarrheal as a result of the treatment ... the normal stuff.

Whilst things look pretty grim at present we need some hope. I searched the net and came across your story and have been trying to track down a copy of your book. Do you know where/how I could source one?

Regards

Ian W.

Have Courage

When I would sit down to write as part of my own therapy, and finally to share with others, I wanted it short – something a slow reader could read in a little while.

It doesn’t seem like all that long ago. The longer we live, the faster the time flies.

In 1996, when I was 68, there were a lot of things I still wanted to do. Now, I’m nearly 82 and the list is just as long. There are still some dreams to chase. I still have ideas.

Some of what I originally wrote was not bad. Some was not that great -- and I removed some.

I removed the index. I don’t know why we need one. I thought -- let’s just take it as it comes. Besides, who knows what the order should be.

Sometimes, I forget to look at my day planner, anyway, and that’s similar to an index.

I added to the original. It’ll take more than twice as long to read now as before but the message remains the same.

One good thing about the extra pages is that others had their say.

Share and maybe a light will turn on.

Let each one of us

Soar like an eagle

If you have comments and would like to contact me, you may do so at:

Robert L. Vandegrift

797 South 350 West

Bountiful, UT 84010

Tel: 801-295-8172

Email: search@xmission.com

I provided books until I didn’t have any more available and then I used CDs. By posting the full CD on the web page it will eliminate the need for the expenses involved in the CD, postage, etc.

I have spent a lot of time and money trying to suggest to patients they should choose to live. Many don’t.

If you would like to make a contribution to this outreach it would be appreciated.

Bob