Jack's Story

Jack.D.Ruda

3rd August; 2000

Deidre,
First I want to compliment you on providing a beautiful and touching website in memory of your Husband. I would be honoured if you wish to include my story. I would be happy to send you a copy of my book if you send me your address. The following is something I have written for other meso patients: I look forward in hearing from you. And now for the story.

There seems to be a lot of new people afflicted with mesothelioma so I decided to re- issue my own story. I apologize to the people who have already read it.

I would like to add my message in hope that it might help some or many of the people afflicted with this disease. Mesothelioma is a disease usually related to asbestos. But to the best of my knowledge I have never been exposed to the stuff, however, there is a new thought that the old talcum powder that was used after a shower, could have been a cause.

We just don't know. However it usually takes 40 years or so to develop but I am aware of younger people getting it. Again, no one knows why or how.

First of all as some of you know, I was diagnosed with this disease in August of 1991. I was told by all the doctors that there was no hope of survival beyond the year 1993. This was told to me by several doctors including second opinions.
Needless to say, their prognosis was wrong. I am pleased to hear about a number of other survivors who have beaten the odds and have survived beyond the two year mark.
Because of everything I read back then, I realized that there was no cure and no therapy that worked.
Mesothelioma is a rare disease affecting some 2,000 people each year in the U.S. out of 250 million. So you can see, it is rare and not among the more common forms of cancer where medicine can receive large grants.

That's not to say that people are not doing something about it. It's just being done very slowly.
I found out that it was extremely important for me to take things into my own hands and NOT TO PANIC!
Therefore, even though I was offered chemo, radiation and even an operation, I chose not to have anything; because as time went on I felt rather well and decided not to lower my resistence with this kind of procedure. Especially when it is known that it didn't work and only made the patient sicker.
I believed that mind over matter was the way to go and that's exactly what I did. After five years of survival I found that my CAT scan showed significant growth.
Needless to say, everything I fought for seemed to end with that diagnosis. For several hours; I, along with my family went into deep depression until I realized that I still felt pretty good and just because someone told me something, why should I change my ideas of "mind over matter"..This worked until the end of 1999, but my scans were getting worse and something had to be done.

Fortunately I found something right here in Rochester, New York. It is an aggressive 3-D radiation technique that was first produced at NIH.
The Doctor in charge had come to Rochester, making this procedure available. He had had experience with some 65 mesothelioma patients with significant success
I went through six weeks of intensive radiation. Not an easy ordeal but it is now over six weeks since my last treatment and significant progress in shrinkage of the tumor has shown up on the CAT scan and I am feeling much better.
This goes to prove if you can hold on long enough, some treatment will become available and life will go on.

Recent CAT scans have shown new growth in the other lung and some in the liver.

When I asked about the meso movement (something I thought didn't happen) I was told that since they had never seen anyone survive this long, they had nothing to compare me with. I continue to reduce stress and not worry. That is my survival.

I know there are a lot of care givers out there and I believe this disease is harder on you than on us patients. The reason is, that WE know how we feel and YOU don't. Therefore you have a greater chance to worry.
I experienced pain for a number of months in my chest and even today. I find it to be mostly stomach acid causing gas pains and they radiate through my body causing pain in the most unusual way. If the pain was persistent, I might worry about it but fortunately it is intermittent.

I wish I could teach my crazy way of life to others. Remember, my philosophy is only my opinion. It is not based upon fact so I can only offer ideas that may or may not work. My family asked me to document my experiences and I have done so in a book called "CO-EXISTING WITH CANCER OR You Thought Living With Your IN-LAWS was Difficult."
My best to all,
Jack Ruda

SOME EXCERPTS FROM JACK's BOOK

I have been reading Jack's book which he so kindly sent to me.
I can truly recommend it to anyone (not just for cancer patients but for all readers.)

It has certainly made me think about the way I deal with my feelings.
Not very well
(I must say and I'm probably not the only one who can admit to this)

On having a second opinion confirming both the diagnosis as mesothelioma, and the prognosis Jack found that the medical society was not very interested in the fact that he was feeling so well..
That was the moment he says, that marked the beginning of his new life.
He realised that his only option was not to try and beat this thing, but rather to try and co-exist with his cancer. He had to do it or it would kill him quickly.
Too quickly.
The decision was all the easier to make because aside from the pain associated with his breathing, he felt close to what used to be normal, and he was still improving.

He continued visiting his internist, mainly to discuss his chest pains. The doctor was quite unconcerned about these pains and his attitude was, in effect saying "this guy is terminal in any case, and won't be around too much longer".
This line of thinking gradually became a serious obstacle in Jack's effort to cope with his cancer, so he decided to change doctors.

The new doctor decided to treat the chest pains as the product of gas build up in his system. To his great astonishment and even greater relief, 99% of the pain vanished after only two days.
And so, after enormous stress and continous pain over many months it was all due to excess gas.
How simple! How ironic!

Jack decided that it would be counterproductive to give into anger. After all who would be hurt by his anger? Who is ever hurt by personal anger?
Of course he would be the victim. He couldn't change the past, so put it behind him. Come to think of it, that is exactly is where the past belongs.

Jack developed a behavorial programme that has for years enabled him to cope with his cancer and lead a life of quality and satisfaction.

One of the driving forces that led him to put his programme together was the knowledge, gained from personal experience; that when you have cancer or any other evil disease, your mind can inflate minor pain or discomfort into something life-threatening.
It becomes easier to believe that your days are out numbered. His experience with pain,which he had been forced to live with, taught him that pain is serious when it becomes constant and overbearing. Now he doesn't worry about fleeting pain or passing discomfort. Every day discomfort that almost every one experiences seems to be magnified when you have a serious illness.  

Another problem he learned to cope with was the ability of the mind to create pain and discomfort out of thought itself. It works something like this
Thoughts of stressful events in the past or about future evil can cause stomach irritation, which sends signals to other parts of the body. What follows is stress that you've produced yourself, in effect out of nothing. If that is what happen's, it can, surely be reversed.    

It's perfectly possible, and Jack has strong convictions about this---that what the mind can distort, the mind can correct.
It's not something that he can prove with scientific precision, but firmly believes that the mind can overcome, or at least mitigate, the destructive consequence of cancer.       

Negative beliefs and expectations can, as we've seen , have devastating effects. This is equally true of the beliefs and expectations of doctors, patients and society.
In spite of all the valid information about cancer that has been provided to the population, our society by and large believes that cancer means death; cancer comes from somewhere outside the individual and there's no way to control it; and mainstream cancer therapy is hard to take and has unpleasant side effects.
These negative beliefs are supported by many, many news stories and articles about cancer patients who put up valiant fights against their disease and inevitably die.

Dr, Carl Simonton and his wife, Stephanie Mathews-Simonton, who are pioneers in potentially life-saving self awareness, techniques of cancer treatment, suggest that negative social expectations can be countered by positive ones: cancer may or may not be fatal; the body itself has powerful defenses against cancer; and medical treatments can be allies of the body's own defences.

    

One form of treatment that only you can administer to yourself is,of all things, laughter! As one old-timer puts it,"There ain't much fun in medicine, but there's a heck of a lot of medicine in fun"

Laughter is especially useful in alleviating pain along with hope, faith, an ongoing will to live, and other positive emotions, all playing a part.

Another prominent believer in the role of laughter is Dr.Bernie Siegal, who's studies show that laughter produces full, relaxed actions of the diaphragm, exercises the lungs, increases the oxygen level of the blood, and tones the entire system of heart and blood vessels.
(Remember "hearty "laughter?).
When we hear a story that we expect to be funny, we experience rising tension that can be measured in pulse rate, skin temperature, and blood pressure.
When the punch line hits, this tension is suddenly released, muscles relax, pulse rate and blood pressure drop.

If laughter does indeed have the power to reduce pain and enhance the body's immune response, it follows that laughter may have the ability to combat unwanted and unusual stress.
A group of Canadian scientists conducted studies to find out whether there was a connection between humor and the level of adjustment to stress. Their tests of large groups of students showed that those who responded best to humor were better able to cope with stresses resulting from personal problems. And those who were cleverest at producing ad lib humor, when asked to do so, were likewise better at overcoming the effects of stress.

   At the nitty-gritty level, how does laughter work?
Dr. Siegal suggests that it increases the level of brain chemicals called catecholamines. These substances in turn push up the brain production of other chemicals called endorphins; these are our natural pain-killers, powerful as the strongest drugs, but without the attached dangers.
So when in pain, watch a comedy; it's great medicine. Learn to build up your endorphins.

People sometimes ask Jack exactly what he does to help himself and, in effect, manage to stay alive so long as he has. This is what he has to say about that. I could say that I do it simply to spite Dr. Death and his predictions of doom and gloom. When I'm being serious (as seldom as possible) I can honestly say that it really has nothing to do with him. I cannot afford to let my feelings about him, which are mostly negative, play any part of my life, because that would be bad for me.
As far as I'm concerned, negativity kills, and I'm making it my business not only to stay alive, but to enjoy it to the fullest possible extent. Besides he is an excellent surgeon and did a wonderful job on me. Who knows, maybe because of his surgery and the tissue he removed, I'm experiencing a better life.

I stand by what I say in these pages, which is consistent with the advice and practice of Norman Cousins, Dr. Simonton, Dr, Siegal, and others like them. I do have specific techniques that I use for myself and teach to other cancer patients who come to me for help. These techniques can be boiled down to these essentials.

1. Desensitize yourself to the word "cancer". The way I've done it is to scream the word over and over again, until it became a kind of nonsense syllable, without meaning. It has by now lost its ability to make me afraid.

2. Urge your family members to desensitize themselves in the same way, adding "Father (husband) has "cancer" until they too, lose their fear of the word. ( This may not be easy, because we can't control the feelings of others. But it's worth the effort"

3. Be aware what cancer can do to you: it can kill you. This Is a fact you cannot wave away or ignore. What I do is live with it, feel good, avoid worry about dying, but never lose awareness of the lethal nature of the disease.

4. When you have pain, be aware of common pains that we have always had but never thought much about. The odds are that most of the time, your pain is not from cancer.

5.Feel powerful in your relationship with your illness. One useful device for me is to form a mental picture of my immune system as an army (led, in my mind. by John Wayne) That's ready to march the instant my cancer cells get out of hand.

6. Think of things you enjoy doing, and partake in them often.

Talk openly with other people who have serious illnesses, with emphasis on what is not so serious about them.

And keep in mind that modern medicine can be a strong ally in your effort to cope with your illness. Modern medicine gets better and better as medical scientists learn more and more about the mechanisms of disease.

Let me reiterate my very fundamental, overriding principle of self-help: you can co-exist with cancer. Believe me, I know it's not easy.
But don't work so hard at believing that you must and are going to "beat it" if it's the last thing you do. Fighting it in this way doesn't help; fighting it in this way only creates more stress, because you always feel guilty that you are not doing enough for yourself. So lighten up. Even if you are, for whatever reason, lacking a sense of humour, you can help yourself to feel less serious than you are accustomed to being.

There's so much more I could copy from Jack's book that I feel I must stop now or I may end up with the complete story .
As I said , this book is well worth reading and to keep on going over it.

It covers things like depression, relaxation, humour etc, but still believes that conventional therapy has its place .
As you read at the beginning of my story, about what it meant when all hope was taken from you; I feel that jack's story counteracts Thom's and my story and others that you have read here.

It was with great joy and relief that I have been able to do so.
I have to also add, that if I had had this book to read when Thom was first diagnosed I'm sure we would have had more "HOPE" and dealt with this disease differently.

I couldn't find anything about this disease and no one to discuss it with. It was like no one wanted to talk about it

This is one of the reason I now have this website, so others need not go through what Thom and I went through.
Thank you Jack for your story and for putting back the "HOPE" in many lives. To finish these excerpts I would like to add what one of Jack's daughter's said

Karen's thoughts

At first the room was bright and cheery. Mom, Aunt Bev (Mom's sister) and I were telling Jokes, something Dad would have done at a time like this.
The door opened and in walked a black cloud or as we now call him, "Dr.Death". He sat down, blurted out, "Jack has cancer, mesothelioma. and has six months to live,"
Our smiles went to exhausting tears. Mom kept chiming, "Jack's always had bad luck." The only words that I could get out were "Oh my God"
Our crying was uncontrollable. There wasn't enough air in this cold, dark room that five minutes earlier seemed so warm and peaceful.

I remember I had to go back to work that day and make a presentation. As soon as I got back to the office, I saw a co-worker who took one look at me and said, "what's wrong?" The word CANCER was so hard for me to say. The sobbing started all over again and I was sent home.

The house was filled with friends and family that night treating us like we were sitting Shiva, a Yiddish term for a period of mourning observed by a family of someone who just passed on.

Sleeping that night was not possible. The tears kept flowing. How ever, my Mom did allow me to have my fiance sleep in the same bed with me under my parent's roof. I guess if you need to find good in anything, that was a coup.

The next day I went to visit Dad. He was lying in his bed. We started talking and holding hands. In walked a resident who said he looked at Dad's charts and feels that he was misdiagnosed. Dad and I smiled at one another and giggled.
Dad said, "I knew you were born under a lucky star. You are my good luck charm.

Boy, did I feel ever so good. Look at the magic I can do. We pinched ourselves. Was it a dream? Our spirits rose and Dad seemed cured until the next day when the doctor came in and said he was mistaken. My luck turned sour.

I must admit, my life has turned out so far pretty terrific. I come from a fantastic family. No wander Dad is still around. Who'd want to miss out on us! I get a lot of my personality traits from my Dad. One in particular is our ability to put smiles on people's faces.
Dad, while he was in hospital before the diagnosis, was not about to sit around and mope. Within days he became the "Mayor" of his hospital floor. He'd visit with all the sick people and cheer them up with a joke, a magic trick, or a humerous story. Everyone loved him.

After his diagnosis, we joined a family support group with many other cancer patient's and their families. Once again Dad was the favourite of the group. He'd turn a sad moment into laughter. He still keeps in touch with the survivor's spouses and even some of the nurses. Anyone who meets Dad loves him and wants to be around him.

I really do believe everyone is put on this earth for a purpose. Dad happens to be here to teach people to heal themselves. Many doctors can be so insensitive. I remember seeing the movie "The Doctors" starring William Hurt, not too long after Dad was diagnosed. (Not a good movie to see when you're going through this yourself.) I do believe every doctor should become a patient to see what it feels like to be treated as a statistic and not as a human being with an assortment of feelings.

Anyhow, it took us, as a family, to realize that Dad's purpose in life is to go beyond the doctors. They may try to heal with medicine but if Dad could bottle up his "medicine" he'd be a billionaire. Dad goes after the heart and mind.
Healing with humor, believing in yourself, wanting to stay around for a purpose.( It doesn't hurt to marry off two daughters and receive three beautiful grandsons, in all these past six years.

What I've learned from all this is that I'm not the good luck charm. I'm just a link. So are my sister, my brother, my mother, my husband, my son, my brother-in-law, my nephew, my grandmother, my aunt, my uncle, my cousins, my friends, etc.
Dad's the chain, we all stick together because of him!