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!

TTFN 

 

Communicating and Documenting Your Journey

When people find out that you have received a cancer diagnosis, they want to know the details. When you are on the receiving end of that diagnosis, as I was in early 2017, you very much want to connect with people.   It is predictable and perfectly normal to want to communicate personally and individually with as many people as possible.  But it soon becomes impractical and overwhelming.  Indeed, by the first weekend in March, I realized that I would not be able to do it through email, texts and phone calls.  The good news is that the solution to keeping family, friends and colleagues informed was already available.

I remember pondering whether to use popular social media to keep people informed.  But I decided that FaceBook, Instagram and Twitter would not work for me.  I knew that some people use these platforms for this purpose, and I do not judge or second-guess that choice.  However, at the time, I found myself feeling strongly I did not want to be defined by the cancer.  I did not need for the whole world to know.  And therefore, I wanted a more private approach to communicating. There were only a couple of hundred people who I felt I needed to keep informed.

(While I now know that many more people would have wanted to know what I was going through, I know made the right decision given how I felt at the time.  But I am deeply appreciative for the best wishes and prayers of the larger network colleagues and associates, and even friends I had lost touch with.)

The solution was CaringBridge.  I am sure than many of you were already very familiar with CaringBridge.  Before my diagnosis, Deb and I had experience with CaringBridge as it was the vehicle that close friends had used during their cancer journeys.  Here’s what Wikipedia has to say about CaringBridge:

CaringBridge is a charitable 501(c)(3) nonprofit organization[2] established in 1997.that allows people facing various medical conditions and their family and friends to communicate. CaringBridge is the first non-profit social network with global reach whose mission is to connect loved ones during a health journey through personal, private websites. CaringBridge prioritizes privacy with no advertisements or selling of user data. People who are provided with an individual’s personal website address (URL) and password can read updates on the individual’s condition or post messages to the family as needed. CaringBridge is headquartered in Eagan, Minnesota. All CaringBridge sites are free and CaringBridge is funded by donor support. Since its inception, over 740,000 CaringBridge sites have been created by people all over the world.

It is easy to set up and it is easy to use.  The functionality is excellent.  Not only do you have a private way to share your experiences, feelings, challenges, victories and set-backs with your family, friends and colleagues, you also end up with a history of the journey, written in real time.  I set up my CaringBridge site on March 4, 2017. Below is the text from our first, introductory post on our CaringBridge site:

Welcome to our CaringBridge website.  On February 14th, 2017, we first learned that Lee had cancer in his throat.  Since we first shared the news with family and friends, we have received an overwhelming outpouring of support, love and prayers.  And everyone wants to stay informed.  We are using CaringBridge to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. We welcome questions and input as we continue this very different journey.  Thank you, thank you, thank you.

And from that point forward it was my primary way of sharing details about my condition, treatments, prognosis, trials and tribulations.  It was also an important and valuable way to receive encouragement, support, prayers and positive energy from my amazing support group.

As you might recall from one of my earlier posts, I had set our tem principles that would guide me in my battle with cancer.  One of the principles was to document the journey.  This principle was important to me. I wanted a contemporaneous record of my thinking, feelings and experiences.   I intended to learn from re-reading the record later, use it to develop and share my lessons with others.  In writing posts for this blog, the records I kept are invaluable as sources and to jog my recall of my emotional, mental and physical state at various stages of the journey.

For the first three weeks after the initial diagnosis, the documentation of my journey was captured in my two journals: 1) my short and sweet, digital “5-minute journal” captured in Evernote; and 2) my longer, handwritten journal.  As I proceeded with treatment, I lost the energy and concentration to do the handwritten journal each day as I had been trying but failing to do.  I did better on the 5-minute journal, at least until mid-April.  As the side effects of the radiation and chemotherapy treatments took their toll on me, even that fell away. But I did not waiver in writing posts for CaringBridge, which became the primary record of the most challenging part of the journey.

I wanted and needed to keep my support team informed.  I knew that my CaringBridge posts would keep me true to my “document the journey” principle.  But if I am to be fully transparent, I know that the main reason I stayed the course and continued to provide updates in CaringBridge was because of the encouragement I received from the people who were with me on this very different journey. Without that support, I would not be here typing this post right now.  Thank you, thank you, thank you.

TTFN

 

 

Fear Management

Everyone who goes through cancer experiences fear.  In this post, I will explain how I dealt with the fear of debilitating side effects from treatment.  (A reminder: these events occurred in March 2017.)

After deciding that I would receive treatment at the Abramson Cancer Center at Penn Medicine, I felt good about the plan.  I liked the doctors very much.  We had agreed on holding off on considering the surgical option.  I accepted that my medical treatment would consist of radiation and chemotherapy.   I planned to supplement the medical treatment with a holistic plan including a Ketogenic diet, supplements, meditation, exercise, Yoga and maintaining a positive attitude.  Sounds good, right?  Well, as good as it was to have made important decisions about next steps, there were some real fears to address.

Even if the treatment destroys the cancer, what lingering effects should I expect from the radiation and chemo?   The truth is that these medical treatments are toxic and damaging to the body.  My research and what I learned from the doctors was sobering.  It was time for me to do some fear management.

What approach should I take to managing the fear?  I had learned of an approach from Tim Ferris, the highly successful author and podcaster (probably best known for his first book, The Four-Hour Work week).   Ferris provides advice to assist with making difficult decisions and acting on those decisions. He recommends bringing to life the worst-case consequences of a course of action.  The idea is to define and really understand the potential negative outcomes of some decision or action, and then determine how you might cope with such outcomes.  I thought this approach would be effective in managing my fears regarding the side effects of treatment.  I used my journal to collect my thoughts and process my fears.  Here is what I wrote in my journal on March 3, 2017:

“With cancer, the worst case is often thought of as being death.  Not necessary to go there yet, although I do realize that this is a possible outcome.  But it is way to soon to even think about that.   For me, the near term worst-case scenarios are surgery becoming necessary to contain the cancer.  And, assuming the surgery accomplishes the goal of containment, the big issue is losing my voice.  So this is what I choose to process as the worst cast outcome (at least for now).  This is a fear for me: not being able to speak, at least not with my normal voice.  OK, let’s bring this to life.  Let’s define the reality of that outcome as best we can.  We will tame the fear by doing so.  Later, we may even do a multi-day exercise to experience not being able to talk. 

What things will I not be able to do?

Speak on the phone. No more conference calls.

Sing, hum, etc. No more Karaoke!

Give speeches.

Teach class

Pray out loud

Say “Happy Birthday” with spoken words

“Argue” in immediate response

Say off the cuff things

Cheer at sporting events

Ask questions of speakers, lecturers, and presenters

Wake Cameron with a gentle voice

Say “I love you” to Deb

Have real conversations with Deb

Do “selling”

Continue my work in South Africa

Speak at funerals, weddings, and other special events

Record video or audio for posterity

What are the work-around and compensatory options?

Play guitar/harmonica/piano

Write papers, books, and blogs

Pray silently

Write down prayers, have others say them

Write Happy Birthday (Play a recording of my voice)

Stop all blurting out and mindless comments

Clap

Write down questions

Record “I Love You”

Type or write with Deb

No more international work

Record things now!

This exercise was very helpful for me.  By specifically identifying the consequences of my worst fears coming to pass, I was able to view the worst-case scenario as something I could deal with.  The outcomes were not desirable or desired, but given the compensatory options, they were not worthy of debilitating fear.  I faced my fears directly, processed them, and minimized their effect on my attitude and on my peace of mind.

I would repeat this fear management exercise again before actually starting treatment.  While my worst fear initially dealt with the surgical option. I soon began to think about the potential long-term side effects of the radiation and chemotherapy.  I learned that many survivors of throat cancers had experienced permanent degradation of their speaking voices.  I also learned that many lost their ability to produce saliva and suffered from severe dry mouth.  Many also lost their ability to taste food, while others lost the ability to swallow a variety of foods.

There was no getting away from the likelihood of long-term effects from the medical treatment I planned to undergo.  The radiation treatment in particular was likely to cause some form of lasting damage.  It would have been easy for me to become preoccupied with the potential long-term effects. But doing so would affect my well-being, my attitude and, possibly, even my health during and after treatment. And so I applied the fear management exercise and it did the trick for me.  I was able to accept the potential for long-term, lingering side effects by being very specific and focusing my mind on what it would be like if the worst possible scenario played out.   This became even more important and valuable when, just before treatment began, I questioned the wisdom of going forward with the conventional medical treatment.   More on that in my next post.

TTFN