Survivors Panel

A synopsis of remarks by Gerald White at the Survivors Panel during the 1998 meeting of the National Kidney Cancer Association; Chicago, July 18, 1998

My name is Gerald White and I am a kidney cancer patient. It is a characteristic of the disease that, no matter what progress is made, I shall always live under this modern day sword of Damocles. Now, almost 5 years down the road from initial discovery, I am referred to as a long term survivor. This would not seem to offer much encouragement to the short term survivors. Therefore, we must get every RCC patient into the long term survivor category without delay.

I would like to submit my experience and present outlook to this group in support of the sincere belief that survival is, indeed, possible.

I should like at the onset to claim what I believe may be a record. My RCC tumor weighed in at a healthy 20 pounds. I have heard others claim that there have been bigger ones but, so far, no firm documentation. Since I have always endeavored to be a high achiever this was, of course, quite pleasing. I knew the operation was not going to be like removing an ingrown toenail. A day or so later upon awakening, it was apparent that it was more akin to those autumn events associated with livestock butchering. The only thing that I could think to ask for was a glass of water. When it was refused I said “I don’t need it for thirst, I just want to see if my ribs leak!” Like most of you the relief that I felt when the surgeon announced that he had “got it all” spread over me like a euphoria. Thus endeth the first lesson.

I was soon to discover that a parallel and even deadlier disease always accompanies RCC. The name of this disease is ignorance and it can be a deadly killer. Although fully aware that I was totally ignorant about RCC, I simply refused to activate an honest effort at learning. Truly if ignorance is bliss, its folly to be wise. Things rocked on with business as usual until a year and a half later when the lid on my complacence was blown off. A CT scan, done at another hospital because it was timely and convenient and not out of any real concern with my primary team at Baylor in Dallas, gave the radiologist some concern. The Baylor people assured me that this other hospital was just trying to get my money. I then made what turned out to be a life saving statement to wit “Why don’t we do a punch biopsy and there will be one less liar in the house”. Sure enough, it was recurrent RCC and reality had begun to set in. The second operation was, I suppose, efficient in that the surgeon used the same scar. I thus had two operations with only one scar. Even though the recurrent mass was tiny by comparison, the recovery was a far worse experience. I was, however, a far wiser man having just discovered that the five most dangerous words that an RCC patient can say are “I just LOVE my doctor”.

The second surgery saw some different thinking on my part. For one thing I managed to locate a private institution in Franklyn, Tennessee that was one of the first to offer processing of harvested tumors to the general public. I was not too concerned with the state of the art at the moment as I was with preserving the specimen in liquid nitrogen against the day when it could be a life saving backup position. The growth of T-cells was successful but the GMCSF attempt failed, in part from lack of adequate sample size. This did not make me think any more of those myopic individuals at Baylor who, without my permission, took 20 pounds of perfectly good cancerous tumor and threw it into the incinerator. They tried to defend their actions by saying that the techniques deriving from this approach would at most be only 30% successful, to which I replied “The damned incinerator was 100% successful”.

If there was ever a time to roll over and die that would have probably been a good one in view of what lay ahead. After my surgeon had “got it all” for the second time I did not feel quite so relieved. Sure enough, a CT scan six month later showed a family of little ditzels growing in both lungs. At that time it was decided to go with IL-2 and save the TDAC for later as needed. It is senseless to try to describe eight solid months of Interleukin to someone who has never taken it. I recall observing to a young lady who had just given a paper at an NKCA meeting that other than fits, fever, blind staggers and frothing at the mouth I didn’t really have any side effects. The trouble with the program was that after 8 months, the tumors were still growing with a possible involvement of the pericardial liner. This did not bode well for long range planning.

Contemporaneous with the above, I had developed an active interest in mind-body medicine and the role of spirituality in medicine. I had read with interest books by Dr. Bernie Siegel and, in particular a marvelous book by Greg Anderson, himself a cancer conqueror entitled “The Triumphant Patient”. It was after the fact when I finally read Norman Cousins “Anatomy of An Illness”, which I would recommend be read first. It was beginning to dawn on me that there was a role for me in achieving. In fact, it began to be obvious that if I really wanted healing that I was going to have to go after it myself rather than merely depending on others. What was even better, it gave me a meaningful activity to fill those dreadful hours and nobody sent me a bill for it.

It has been previously said that if you don’t have an active spiritual belief system and you have cancer, you’d better get one quick because you are going to need one. Regardless of what faith you profess or whose system you use, they all start with relaxation and peace of mind. It is noteworthy that forgiveness of your enemies seems to be a requisite. You can bear grudges and hate or you can successfully fight cancer but you can’t do both. All my life I had been a nominal Christian, although for many years the preacher could scarcely count on me even at Christmas and Easter. Now, with time on my hands and a desire to learn, I turned to the scriptures for guidance. I was amazed to find how much of the Bible is devoted to healing. I saw all this as complimentary to, not in controversy with modern medicine. Nevertheless, with the aforesaid set of circumstances, a decision had to be made and I made it. I said in a friendly sort of way to my oncologist “To hell with this. It isn’t working and death is preferable to putting up with this mess in my life indefinitely.” He was most understanding and seemed anxious to observe the outcome.

Now in our community there was a little Episcopal chapel, built in 1863 and located in the same little country cemetery that Davy Crockett’s wife is buried. I had never even been inside an Episcopal church but when we heard that the Rector had decided to offer a biblical healing service, it got my attention. It is difficult to describe the peace of mind that accompanied that service. I had not imagined that it would be like that. The question that I had felt dealt with all the so-called “Super Christians” and TV evangelists was “Why does Oral Roberts need Glasses?”. With this component of the healing program set in place, I set about to get the guided imagery into high gear.

One hears the term “Guided Imagery” referred to often these days. I can tell you from experience that getting at the “how” of it is not so easy. It is a method by which the conscious left brain communicates with the subconscious right brain by the use of imagery. More importantly, the desired result is for a particular mechanism in the human body to be activated to accomplish a specific purpose. The purpose of this particular exercise is to locate and kill cancer cells. The human immune system is endowed with many effective and wonderful protector cells. They have names such as neutrophils, macrophages, T-cells and natural killer cells. When cancer slips through the protective screen and grows, the visualizations of guided imagery seek to sound the alarm and send these friendly warriors into battle. Beginning with relaxation there are the visualization techniques that are personalized to the individual and require intense mental focus, discipline and regularly allocated time. These techniques involve animation and colors. It should be emphasized that this is not a quick fix for something as voracious as cancer. Many people are eager to get started until they find out the extent of commitment required. I really believe that most will opt for taking their chances with death.

It is important to note that this is not “alternative medicine”. Far from it, this can be a marvelous complement to modern medicine and it is in this light that it should be viewed. Most doctors seem unwilling to discuss this modality with cancer patients. Perhaps this is due to unfamiliarity but more likely to disbelief. As I was told, this is not within the body of the conventional wisdom of the times. “Conventional Wisdom” was first proposed by the Harvard economist John Kenneth Galbraith. He defines it as ideas which are so engrained in our culture that no one dares question them. Unfortunately, conventional wisdom is often wrong and he points out that policies based on conventional wisdom are usually doomed to failure. Conventional wisdoms can continue to influence our behavior in spite of overwhelming, irrefutable evidence that they are wrong. Medicine has historically been slow to give up its traditional attitudes that emphasize the conventional wisdom and cancer patients all too often find themselves cut off from valid treatment programs such as guided imagery for lack of an available source. There is absolutely no excuse for an oncologist to be unfamiliar with the excellent results that this methodology has recorded, usually with the “terminally” ill.

Perhaps you are wondering what happened in my case. It seems that I went off treatment and on with the program as discussed above in July of 1996. One result of my career in the physical sciences has been a passion for documentation. I insisted on doing all the scans on a three month basis. When, three months later, I saw the oncologist put up the films and heard him exclaim “Well I’ll be a son of a bitch!”, I knew that something had changed. Sure enough, all but two of the ditzels had disappeared and these had shrunk down to nubbins. This was confirmed by my doctor at Northwestern whose kind and compassionate manner I shall never forget. A typical response from conventional wisdom is that the Il-2 finally “kicked in”, to which I reply “Why in the hell didn’t it kick in during the eight long months when I was taking it?”.

The tests keep coming back negative except for the two little “ditzels” that remain on the CT films. It was necessary for my peace of mind to deal with them and this I was able to do in a very straightforward manner. I was in attendance at the Seattle meeting of the NKCA when an excellent paper was presented on Positron Emission Tomography (PET). This marvelous diagnostic machine resembles the CT machine in outward appearance but is totality different in methodology. Active cancer cells injest glucose at a much faster rate than do ordinary cells and certainly faster than dead cells. The patient is injected with a vial of activated fluorodioxyglucose and time is allowed for circulation. The machine then looks for “hot spots”. Cancer “mets” will then light up like a Christmas tree. Dead tissue will not show at all. My little “ditzels” did not show “uptake” indicating that they were dead. Reassurance is such a wonderful thing. What is surprising about PET is that so few oncologists seem to be aware of it. The technique is almost as old as CT. It has been used more in heart and Alzeheimer’s studies although it is finally coming into its own in the cancer arena. Generally speaking, the docs who have access to PET will generally praise it, while those who do not will dismiss it as either too costly or as merely a research tool, neither of which is strictly true.

It is only necessary to look around us to see the growth of academic interest in mind-body medicine. I recently attended a three day seminar on “Spirituality In Medicine” directed by Dr. Herbert Benson of the Harvard University Medical School. The course was presented in nearby Houston and I was surprised to note that over 700 people from all over the world were in attendance. The cases presented were awe inspiring, usually from cases deemed hopeless by conventional wisdom. With the full weight of the scientific method now being applied to ongoing studies it is apparent that conventional wisdom in the medical field, particularly as regards the treatment of cancer is in for some astonishing and wonderful changes. Failure to disengage from the past does not preserve the past, it merely destroys the future.

“The Triumphant Patient” (ISBN 0-8407-7714-0) by Carl Anderson, himself a triumphant cancer patient, is loaded with self help principles. With a cover note by Carl Simonton and an introduction by Bernie Siegel, it gives a terrific boost to the person who wishes to take charge of a seemingly hopeless situation and emerge a triumphant and whole person healed in both body and mind.

To those of you in the audience that have RCC as a painful reality and not an academic interest, let me assure you that there is a dimension of hope available to you that you may wish to know more about. Before I am accused by the proponents of conventional wisdom of generating “false hope”, I should like to point out that hope is neither true nor false, it is just hope. It is a beautiful word and fits right in with peace, healing and faith. Many within the medical community actively believe that you have the cure within your own body if you can just activate it. Many researchers are seeking to define and activate the mechanism of spontaneous remission. Whatever you do, I urge you to take personal charge of your healing. If you don’t, somebody else will and you probably won’t like the outcome. It will seem awkward at first, like driving on the left side in England, but with time it will grow to seem natural.

I should like to close with a quotation from Anderson’s book which he calls “The Triumphant Patient’s Creed”.

Hope reigns in my life today.

My illness does not rule me.

Daily I seek to

Acknowledge the physical,

Be positive in the mental,

Transcend the emotional,

And anchor in the spiritual,

Knowing that God’s peace is my goal.

Thank you, Lord, for today’s blessings!