Wednesday, December 14, 2016

Death Be Not Proud, a book and a look at alternative medicine

My copy--published 1969
On a recent morning I awoke thinking about a story I read in the 6th grade. The book was written by a 1940’s journalist named John Gunther. He named his book, Death Be Not Proud, after a poem by John Donne. (You can find it at the end of this post.)

Wondering why this book has stuck with me for all these years led me to some questions: What word choices did the author use? How did he transition from one sentence into the next? Was it memorable for me because the main character was only 17 years old when he died of cancer? Maybe, it left an impact on me because my mother’s illness from ovarian cancer was still fresh in my mind.

Even as the pages of my edition (1969) continue separating from its binding and are now held together by a rubber band, I cannot think of ever throwing it away. There is such emotion in the pages of that book even though the writer tried not to let his be known. Grabbing it from the shelf, I revisited the story once more.

Death Be Not Proud--a memoir is about John and Frances Gunther’s son, Johnny, who has a glioblastoma mutiforme brain tumor. What is glio multiforme?  This type of brain tumor is as deadly now as it was then. The story tells the events from his treatments to his death spanning over 15 months. The first treatments involved surgery, mustard--liquid NH3--administered intravenously (a chemical compound found in the mustard gas used in World War 1--the first chemotherapy), and x-rays targeted at the tumor. All the doctors they had seen, some thirty-five or so, believed not much could be done, their child was dying.

While I read the first chapter and into the next, my initial plan to study why I considered this a good book changed. The change happened with one word, Gerson. No, this can’t be, I thought. I kept reading. My eyebrows came together enhancing the deep wrinkle between them. What, is going on? This book is about living until you no longer can, but it is also about the use of an alternative treatment called Gerson Therapy. 

In the summer of 1946, John conversed with a gentleman about an unorthodox doctor practicing in New York, a Dr. Gerson. What drew John and Frances to him was his experience with brain tumors. They discussed the idea of contacting Dr. Gerson with Johnny’s main doctor. He opposed it but soon softened as they all knew Johnny’s condition was in decline. Most likely he would not live much longer. With nothing to lose they set up an appointment. For a large part of the remaining time Johnny had left, he was a patient of Doctor Max Gerson.  

John Gunther writes in Death Be Not Proud that Max Gerson never stated that his diet would cure someone of cancer, but his patients hoped it would and patients of the present day that follow the Gerson Protocol share that same hope.

The Gerson Institute’s website gives a brief history of its founder, Max Gerson. He was medically trained in Germany. After finding success in treating leukemia and tuberculosis of the skin by changing the diet of his patients he expanded the idea and brought it with him when he emigrated from Germany to the US. He made other claims of curing type II diabetes with his diet and eventually other diseases were brought into the mix including cancer. After his death in 1959, (he had lost his medical license two years prior) his daughter, Charlotte, took over eventually running the Gerson Clinic in Mexico. It continues to operate today. 

If you happen to be someone who has been in the cancer world for a little while most certainly you are aware of the Gerson diet. If you have not been introduced then let me provide you some information. The diet that Johnny followed contained no fats, or salts, only vegetables. Today, the diet involves lots of juicing: carrots, a concoction of green plants, apples, oranges or grapefruit. The foods eaten are plant-based only. Supplements are an integral part of the program.    

Early in the book, there is a brief mention of enemas as part of Johnny’s treatment. This is the most troubling part for me of Gerson therapy. The book did not describe the use of coffee in these enemas although I am guessing, like today, it is the main ingredient. The brand used is of course completely different from the regular coffee sold in grocery stores. Wonder if the feces used to make a very expensive specialty coffee would be accepted by the coffee enema experts. (Kopi luwak (Indonesian pronunciation: [ˈkopi ˈlu.aʔ]), or civet coffee, refers to the coffee that includes part-digested coffee cherries eaten and defecated by the Asian palm civet (Paradoxurus hermaphroditus). Reference: en.wikipedia.org/wiki/Kopi_Luwak]) The answer most likely is no.

The reason for the enemas stems from the belief that the liver and kidneys work inefficiently in removing toxins from the body and need some help from some good ole ground coffee beans. Come on now! Don’t people ever wonder how an enema is actually going to cleanse the liver? This is where alternative practitioners like to throw in some science that seems plausible but is not. Brace yourself because what I think is crazy is about to begin.

The coffee is held in the rectum for several minutes. (Takes practice, so I read.) While held, the important chemicals from the coffee seep through the membranes of the colon and enter a portal vein that enters the liver giving aid where the digestive system needs it allowing for this cleansing to take place. I hope all of you reading are thinking what I was thinking the first time I read this explanation: What kind of lunacy is that! Today, it is well known that too many enemas can cause a malfunctioning of the digestive tract. Cancer patients have enough trouble with their digestive system so please, let’s leave that part of our anatomy alone. And, do not try this at home or at the Gerson Clinic.

John Gunther believed that Gerson thought cancer to be misplaced cells that happened as an embryo develops. These misplaced cells might be destined to become a liver cell but are found in a different organ instead. Some environmental trigger inside or outside the body causes the cell to begin growing and from there cancer develops. Since the cell is in an environment that it is not supposed to be, it begins to destroy or eat-up all surrounding tissue. This idea I admit would seem plausible in a time when knowledge of cellular functions related to cancer was mostly unknown. Something like diet seems harmless and maybe believing there is truth that toxins need cleaning from our digestive tract is forgivable of someone who isn’t aware that our kidneys and liver are fine detox organs that don’t need help unless you are terribly ill; by then it is too late. That is why, before a patient does anything, they need to speak to their doctor. Add desperation to the equation and it becomes clear why people try this unconventional approach to treatment. Today, thankfully, science has revealed so much about cancer and how it works.  Alternative medicine peddlers love an uneducated or unquestioning cancer patient. I get it. When all is lost and only hope remains, people want to follow hope and Gerson was the only one offering it even if the hope had no basis in science. Here at The Cancer Classroom, if I help anyone with anything, I hope that it is for patients to always ask questions.

Alternative treatments do have stories where the patient improves and thus is the case of Johnny. For a measured amount of time during his 15 month ordeal after diagnosis, he experienced some improvement with his motor skills and possible shrinkage of the brain tumor while on the therapy. Some of Johnny’s conventional doctors believed it was the latent result of the mustard, surgery and the x-rays. Because of Johnny’s improvement, Gerson proclaimed “Your son is saved.” The “bump” on Johnny’s head still remained but Gerson worked to convince everyone that “the tumor was dead, killed by diet.”

Two neurologists told Johnny’s parents that the diet had nothing to do with any reprieve that he was experiencing while on Gerson’s diet plan. Still the family remained steadfast in their desire for Johnny to continue the treatment. When things no longer were improving, his other doctors thought he should try mustard again and that Johnny would benefit from another surgery, but Gerson’s word was powerful when he said the anesthesia would kill him because it conflicted with the diet. There was no mention of how this was known; I am guessing anecdotal evidence.

My shock at finding out Johnny had been on the Gerson Protocol did not change the way I felt about the book. I have a different view of it but it is still what I consider a "good" book. The final pages, “A word from Frances” written by Johnny’s mother touched me emotionally. Her writing for me may have been why my memory of this book has lived with me all these years. Her words flowed into me and I drank it all in, never to be separated. She writes of regret in sending her son to boarding school at a young age. Seems natural when reflecting on life to wonder if relationships or events would have turned out better if things had been done differently.

She wanted to create a human being that would make the world a better place and she did as seen in the letters from people who wrote about her son. I have wanted to do the same with my own children. Parents have a huge responsibility to teach their children to treat others with kindness. We must each play our part to bring civility and goodness to our world.  Then maybe there would be less chaos and violence. Our children are a sign of those efforts. There needs to be more work in this area.

I love her words left on the end pages of this book and the ones scattered throughout. “Life is a myriad series of mutations, chemical, physical, spiritual . . . that law of life which out of infinite mutation had produced Johnny, that law still mutating, destroyed him. . . . Loving life, everywhere and always” are just a few.  

I started on a quest to find out what made this book memorable. I accomplished that goal as it is clearly a combination of so many things—the words, the emotions, the subject matter. This book resonates beyond its pages since all of us will face death. Beyond those elements, what is missing from several lesson plans that I found on-line neglect to talk about the subplot: the use of unconventional verses conventional treatments. Each of us will at some point face illness and need to be aware that pseudoscience exists and educating yourself about your illness and the treatment practices that work or don’t work is so important.

Because I think 6th grade is too young to fully appreciate this book, I did a little digging. I found out that in 1975--I read it in 1976--the book was turned into a movie starring a popular teen star at the time, Robby Benson. I never saw the movie though. Popular culture does influence what is taught in classrooms and this small piece of my life proves that. A lot of books I think are read too early in the education of a student. This is one of those books. I am going to guess that this is yet another case of too many books, too little time.

As promised, here is the poem from which the story of Johnny Gunther was named.

Death, be not proud, though some have called thee
Mighty and dreadful, for thou art not so;
For those whom thou think’st thou dost overthrow
Die not, poor Death; not yet canst thou kill me.
From Rest and Sleep, which but they picture be,
Mush pleasure, then from thee much more must flow;
And soonest our best men with thee do go—
Rest of their bones and souls’ delivery!
Thou’rt slave to fate, chance, kings, and desperate men,
And dost with poison, war, and sickness dwell;
And poppy or charms can make us sleep as well
And better than thy stroke. Why swell’st thou then?
    One short sleep past, we wake eternally,
    And Death shall be no more: Death, thou shalt die!

2 comments:

  1. I remember reading this in grade school. While it did not resonate with me as strongly as Love Story (which could have been written about my parents), I recall it as being profoundly moving.
    Not sure I'd want to read it post-cancer... too many fears ...
    When my dad was dying, he decided that shark cartilage would save him. I was somewhat skeptical. Worked about as well as coffee enemas.
    I hope you are having a warm and peaceful December!
    Cathy

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    1. Hello, Cathy. Happy New Year!--since I am responding so late to your comment. I remember "Love Story" because of the movie. I didn't realize until I read Wikipedia that it was a book as well. My mother watched it with such intensity. I imagine it affected her emotionally since her life was threatened by cancer at 35.
      I am sorry your dad felt he needed to try shark cartilage-- false hope and dollars taken.
      My children have been home recently filling my house again. That always brings me joy.

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