Doubts, Second Guessing and Trusted Advisors

It wasn’t long after confirming my plans for treatment at Penn Medicine (in early March 2017) that I started to question whether radiation and chemo were really the best ways forward.  The adverse effects of radiation and chemotherapy are well known.  They can kill the cancer cells but, along the way, they wreak havoc on your body.  Moreover, after treatment is done, and hopefully the cancer is gone, the potential long-lasting effects can be severe, even devastating.  This was especially true for the type of cancer I was fighting.

The throat is the conduit for and enabler of important bodily functions.  Breathing, drinking, eating and speaking, functions most people take for granted, all depend on the proper operation of an intricate set of parts inside your neck.  I was preparing to subject this delicate and sensitive part of my body’s machinery to a very large dose of radiation.

As a former engineer, builder and consultant for commercial nuclear power plants, I had a deep appreciation for what concentrated doses of radiation can do to the human body.  Of course, in commercial nuclear plants, we design safeguards and implement procedures to minimize exposure to radiation from plant operations.  And yet, even with this knowledge and experience, I was about to deliberately allow technicians to bombard my neck with radiation.   Why wouldn’t I have doubts?  Why wouldn’t I second-guess my decisions?  Why wouldn’t I seek to be sure I was taking the best path to beat the cancer, but not then have debilitating side effects. 

And so, I jumped back into exploring and researching my options.  I revisited the documented experience of others who had similar forms of cancer and went through the medical treatment I was contemplating.  But at this point, I also had the input from my Oncologists.  The risk of serious and lasting side effects was high. I had to face the reality that I would almost certainly lose significant function, most notably in voice, ability to eat, swallowing and saliva production. There was no doubt about it.   With that being the case, the penultimate question became “could I beat the cancer without radiation and/or chemotherapy?”

Through my earlier research, I had learned about the two theories of how cancer operates.   (I will over simplify here, with no intention or expectation that I will do justice to this complex subject.)   The dominant theory in the world of western medicine and science is that cancer is caused by genetic mutations.  The second theory is that cancer is caused by metabolic dysfunction at the cellular level.  (This alternate theory was first discovered in 1923 by Otto Warburg. His discovery earned him the Nobel Prize, but was basically set aside by the scientific community for many years.)   The significance for a cancer patient is that the two theories lead to the emphasis of different protocols for beating the cancer.  With many decades of a near-singular focus on the genetic theory, the treatment protocols in western healthcare basically ignore the potential that cancer is primary a metabolic disease.  In more recent times, there has been a substantial and growing emphasis on the metabolic, but not yet in mainstream healthcare.

I spent significant time and energy reading and studying about the metabolic theory, its implications for treatment protocols, and the experiences of people who pursued alternatives to traditional genetic theory based treatments.  I learned that some cancer survivors had achieved great results either after disappointing results with, or instead of, radiation and/or chemo.  I also learned that some people who pursued only protocols based on the metabolic theory did not fare so well.  In this latter regard, there were some very high-profile cases, for example Steve Jobs who suffered from Pancreatic cancer.

On the whole, the publicly available information about the metabolic theory is quite compelling.  I became convinced that, in some cases, protocols aimed at treating metabolic dysfunction were a viable alternative to treatments aimed at killing genetically mutated cancer cells.  The emphasis at the time was “IN SOME CASES” and herein was the challenge.  There simply was not as much research and evidence on which to determine with confidence whether my cancer was such a case.   My cancer was of a type and at a stage where death was a potential consequence.  I had every intention of winning the battle and not only surviving but thriving in the years ahead.  Deciding how to proceed was among the most difficult decisions I had to make on this very different journey.

Faced with a difficult decision, I wanted to ensure that I was approaching it with the right framework, considerations and perspectives.   Debra was my partner in evaluating options and I valued all of her input and perspectives.  While it was ADD an “a) highly personal decision, I felt we needed input from a few people who I knew would provide me with relevant, objective and carefully considered advice and counsel.  I approached a small number of friends to serve as my “personal advisory board”.  I asked them to serve as a sounding board and to provide their input and perspective.  It was a wonderful group of friends.  They played an important and timely role in my evaluation of treatment options and provided input in a direct and unvarnished manner.  It was exactly what I needed.

The unanimous input from the members of my personal advisory board was to go forward with the radiation and chemotherapy as planned, and to simultaneously pursue protocols based on the metabolic theory.  All of my advisors had experience with cancer in family members, friends or colleagues.  And they brought a variety of technical knowledge and analytic skills of relevance to the question at hand.  The compelling point upon which my advisors agreed was that, in far more cases than not, positive outcomes had been achieved with radiation and chemotherapy.   There was simply not enough evidence yet to rely solely on metabolic-based protocols for the type and stage of my cancer.  But the evidence was good enough for all to agree that metabolic-based protocols should be used to supplement the traditional medical treatment regime.

A significant component of protocols based on the metabolic theory is dietary in nature.  The key is to keep from feeding the cancer cells with the glucose they need to multiple and do their deadly deed.  The good news is that, by March of 2017, I had already been on a “ketogenic” diet for a couple of months.  This is a diet that enables your body to maintain a state of ketosis in which cellular energy is produced from fat rather than glucose.

The lesson is that doubts and second-guessing are important parts of the process and anyone going through cancer should expect them to occur at various times.  My advice at those times is to recognize that you are not alone.  Tap into family, friends and colleagues, and seek their input and perspective, if for nothing else than to be sure you have not missed a relevant consideration.  At the end of the day, the decisions are still yours to make.  But knowing that you have the benefit of multiple perspectives and advice from people you trust will build your confidence in making your decisions.  Special thanks to my special friends who supported me as members of my personal board of advisors.

With respect to the ongoing competition between the genetic and metabolic theories of cancer, I am convinced that they are both relevant.  I found the doctors, nurses and technicians on my medical team to be very open to the supplemental protocols I adopted.   They were not only open to it, but also helpful and curious.  Knowing that I was pursuing the ketogenic diet, my doctors used my routine blood tests to check on key parameters potentially affected by it.  While nutrition is sorely lacking as a area of emphasis in western medicine, my team was sincerely interested in learning from my experience and supported me at every turn.  Thank you to my entire treatment team!