A Very Different Journey

This has been a difficult post for me to finish.  I started working on it several weeks ago and found myself struggling to focus on it.  In all of my earlier posts, I have tried to recall  lessons I learned so I could pass them on for the benefit of anyone who reads my blog.  Up until now, I have been writing about the process of dealing with the diagnosis and preparing for treatment.  But as I am now transitioning to write about my experience with the actual treatment, my writing has been slow and tentative.  I have stopped and started more than a few times.  Maybe I am trying to hard to glean the lessons from the first treatment. Or maybe I have just been too busy living in the present to be able to put myself back in that time and place. In any event, forgive me if this post is less clear on lessons and more about how I remember that first day of treatment.

I had read that some patients had found fasting helped to prevent the nausea that often follows chemo treatment.  I figured it couldn’t hurt, and it might allow me to recover more easily after the chemo.  I maintained the fast I started on Sunday through Tuesday, March 21, 2017, the day of my first chemo and radiation treatment.

I had also read that acupuncture helped some patients cope with whole treatment process and minimize side effects of chemo radiation.  So I decided to have my first ever acupuncture session ahead of my treatment.   It was a very relaxing experience.  However, the acupuncturist told me that most people arrange sessions to deal with specific side effects or pain and discomfort in certain parts of their bodies.  This allows the acupuncturist to focus on specific “energy pathways”.   For me, it was just part of an overall process.  I liked it and would recommend it to anyone.

It’s a funny thing, but fasting and acupuncture gave me a sense of being in control.  So did staying on the Ketogenic diet.  I told myself: “Cancer was not setting the rules of battle, I was”.

Radiation treatment was scheduled to be five days per week for seven weeks.  Chemo would be less frequent.  The doctors had decided that I would receive a mega-dose once per week, rather than receiving multiple chemo treatments each week.   This would limit the number of days I would be subject to the “chemo flu”. I really liked the idea of fewer chemo sessions.

I had lots of offers from friends to drive me to initial treatment.  But Debra wanted to take me on that first day.  I was glad she did, but I did not like the fact that she had to go through this experience.

On day 1 of treatment, I felt like it was finally game day.  After several weeks of evaluations and preparations, it was time for the real deal.  I had no fear or trepidation.   I was feeling good, except for some slight discomfort in my throat. But I fully expected that the treatment I was about to begin would almost certainly make me feel a lot worse very soon.

It’s strange feeling just before starting chemo.  You think, at least I did, I am about to allow poison to be deliberately put into my bloodstream.  You hope that the poison will kill the cancer without doing too much harm to your body, but you know that it’s not going to be pleasant.  It’s at that point you begin to truly recognize and personally appreciate the importance of research to develop alternative treatments.

The process of getting chemo is simple and straightforward.  Either an IV is started just before each treatment or, in some cases, a patient receives a port that can be used through out the duration of chemo treatments.  In my case, a new IV would be started each time.  I would soon start to feel like a human pincushion.

At Penn Medicine, there is a strong bias toward IV hydration in conjunction with chemotherapy.  IV hydration helps to maintain kidney function.  This is important because one of the most serious side effects of chemo can be kidney failure.  Not such a great result if you kill the cancer but ruin a kidney.

I had thought that I would only be heading to the chemo treatment room once per week.  But I learned on the first day that I would need to come back at least the following day to receive additional IV hydration.  This was especially important because my initial chemo regime was to involve a mega dose once per week.   Without the additional hydration, the risk of kidney function issues would increase.

During and immediately after chemo treatment the only difference I sensed was a full feeling.  Not surprising, given the amount fluid they pumped into me.  But I needed to give some back before I was finished.  They typically won’t let you leave the chemotherapy center until they confirm that the urinary tract is in working order.   Then it was on to radiation treatment.

We scheduled my first radiation treatment to occur shortly after completion of chemo treatment. Unfortunately, we underestimated the time to complete the session, including hydration.  It took nearly 4 hours that first day.  We had allowed only 3 hours.  But because the patient information system is integrated, the coordinators in radiation knew where I was and that I was coming.

I had planned to catch up on my reading during chemo treatment.  Best intentions were not realized.   I found it hard to concentrate on reading. There were frequent visits from the nurses and lots of checking on the IV.   Then there was periodic changing of the IV bag, as I received multiple courses of hydration.   But the biggest reason I did not get much reading done was that I found myself dozing off.  This was highly unusual for me, because I am not a nap taker.  And I typically don’t require a lot of sleep. With the benefit of hindsight, it seems that I was very tired from all the anticipation and preparations. As the chemo treatment was underway, I relaxed and settled into the process.

Radiation treatment involved an entirely different set of procedures.  And it was a lot more difficult to relax during it.  The radiation treatment center is in the basement of the Perelman Center.  There is a very large waiting room that always seems to be busy.  There were so many people receiving treatment, it continually amazed me.

After waiting for my name to be called, I walked to a staging area, put my valuables in a locker, and exchanged my clothes for a hospital gown.   Then I waited in a small waiting area until a technician escorted me to the actual treatment room.   The equipment was similar to a scanner, but seemed larger and more imposing.  The technicians had me lay on my back on the treatment platform.  Then they would place the custom-made mask over my face. This would then be tightly fastened to the platform so that movement of head was impossible.   Next they would align the machine using a laser and a small tattooed dot on my chest.  All of this was to ensure I would be in exactly the same position during each of my 35 radiation treatments.  Precision was important to focus the radiation on the cancer and minimize damage to surrounding tissue.

The technicians then departed the treatment room and took up their positions in the control room.   They spoke to me through the sound system.  I communicated to them via hand signals.   Then the treatment began.  The drone of the machine and periodic knocking sounds competed with the music that was piped into the room.  (For the first few treatments, it seems that the technicians had a weakness for Motown, which was fine with me.)

For me, the actual treatment time was about 20 minutes.  You feel nothing from the radiation.  But you know that it is hard at work wreaking havoc with cancer cells and normal cells alike.  My memory of the first session is primarily about having my head firmly attached to the treatment platform.  I was glad I had taken up mediation six months earlier, because it gave me tools to stay clam and relaxed in a not so comfortable position.  I remember thinking that anyone with claustrophobia would really struggle with this circumstance.

I was happy to have day 1 of treatment in the books.  I was looking forward to eating the next day, and to determining whether the fast had helped to stave off nausea that often came after the chemo. That evening I felt good about the overall program and I was confident that I doing everything possible to beat the cancer.  I wrote in my journal: “I am doing everything necessary to guarantee the best possible outcome in fighting the cancer.”  Most importantly, I knew I had amazing support from my family and friends.

TTFN

In this post I will share my experiences and insights about preparing for the start of treatment.  The period just before cancer treatment begins can be a time of stress and worry, but it doesn’t have to be.  I was determined to make the week ahead of my first treatment a time to refresh, encourage and enjoy myself.   Starting treatment with a positive mental attitude and peace of mind definitely helped me to more effectively deal with the challenges that come with radiation treatment and chemotherapy.

As I shared in my last post, I went through a period of second-guessing before committing to the treatment regime.  (My apologies for the “version control” errors in that last post.  Moving too fast on Memorial Day weekend.)  But once I had resolved my doubts, I was ready to get on with it.

There are lot of things that need to happen ahead of radiation and chemotherapy.  Multiple medical tests and evaluations are conducted to provide a baseline for assessing the side effects of treatment.  In addition to the battery of blood tests, there are dental and hearing exams.  Radiation can wreak havoc on your teeth and chemo can degrade your hearing, so the doctors need to understand your starting point.

The preparations for the radiation treatment itself were extensive.  There was a detailed MRI scan to provide data for the technicians to develop trajectories and energy levels for the radiation treatment.  Then there was the creation of a mask that would be used to hold my head firmly in place during actual treatment.  The process of making the mask on my face was fascinating and reminiscent of being part of special effects make-up.  It was not particularly pleasant. I would learn to strongly dislike that mask before my treatment concluded.

The start of treatment was scheduled for Tuesday, March 21, 2017.  That was the day for first chemo treatment and first radiation treatment. The last preparatory activity was a full simulation of radiation treatment, just without actual radiation.  This would confirm that everything was set, especially the computer program that would control the trajectory and energy levels of the radiation.  This dress rehearsal would occur on Monday, March 20, 2017.

A week ahead of time, I made a plan for my personal preparations.  I would have a great workout on Tuesday.  On Wednesday, I would travel to and work with my client.  On Thursday, I would teach a class for a group of graduate students at the University of Pennsylvania (Private Sector Perspectives on Regulatory Risk).  After class, I would take Debra to a fine dinner at Butcher and Singer Steakhouse in Philadelphia.  (Deb loves a great steak!)  Then we would spend the evening at the Ritz Carlton.

It was a great week. But the thought of just hanging out on the weekend, and thinking about the upcoming treatment, was not endearing to me.  And so, the next day, I flew to Colorado for a few days of skiing with some good friends.  The trip had been planned for some time, but I wasn’t sure I would be able to go.  My friends were committed and I had not confirmed whether or not I would make it.  Debra and my doctors encouraged me to go, saying there was no physical reason for me not to ski. That was all I needed.  It was the best thing I could have done. The skiing, the beauty of the Rocky Mountains, and the company of good friends was a wonderful recipe for my final preparations.  In my Caring Bridge post on March 19, 2017, I wrote:

“The skiing has been great, though the air temperature soared to into the 60s!   We skied nearly 30,000 vertical feet before my legs told me they were done… We topped off an excellent day with dinner ay my favorite restaurant, Splendidos.  The Colorado lamb and a side of roasted Brussels sprouts met my ketogenic needs, as well as delighted my taste buds…

… I feel great. The only symptoms that remind me that something is amiss are fullness in my throat and the raspiness of my voice.  This Weekend in Beaver Creek is an important part of my mental, emotional and physical preparation for my treatment.”

I posted the above just 50 hours ahead of my first chemo treatment.  That evening I began a two-day fast.  The intent was to minimize nausea and other potential side effects, and also weaken the cancer cells so they would be more likely to succumb to the effects of both the chemo and radiation treatments.

I flew back to Philadelphia on Monday, March 20, and I took the local train directly to the Abramson Cancer Center at Penn Medicine.  I arrived in plenty of time for the last prerequisite to starting treatment: the simulation ahead of the actual radiation treatment. This would be my first experience with the mask that would be used to keep my head and neck firmly in place during treatment.  I came to appreciate that this dress rehearsal was as much for me as it was for the technicians.  The routine I learned during the simulation would be part of my life for five days a week for the next seven weeks.  The simulation was completed without any issues.  All systems were ready.  And I was ready too.

I think back on that week with very positive memories and with clear recognition that my choices helped me to be fully prepared for the start of treatment.  What did I do?  First, I continued with activities that were part of normal routine. I kept commitments that I had made earlier: physical exercise, working with my consulting client, teaching my class at Penn.  I continued life with a sense of normalcy, living in the present moment.  Then I did some special things, celebrating life and filling myself with positive energy.   A special dinner with Debra, a night at the Ritz Carlton, skiing in Beaver Creek and an uplifting time with good friends: these combined to increase my inner peace and my confidence that I was doing everything necessary to beat the cancer.

I believe my experience offers a valuable lesson for anyone going through similar medical challenges.  Do whatever it takes to create a positive sense of self and to remind yourself that you have much to be thankful for and, even more so, much to live for.  Do not allow the circumstances to paralyze you. Recognize and really believe that the cancer or other illness does not define you or who you are.  I’ll leave you here with some excerpts from my 5 Minute Journal on March 20, 2017:

“I am grateful for my sense of inner peace and my focus on fully recovering…

My PMA [positive medical attitude], support group and excellent medical team will get me through this.

I am strong and getting stronger

I see the time when this battle will be a past story which I draw upon to help myself and others”

TTFN

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 

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

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

I received many responses to my last blog wishing me good luck and sending me prayers, best wishes and positive energy.  I am so very grateful for these blessings, and for my supportive friends and colleagues.  But I realized that a number of folks were new to my blog and were reading my last post as a current event.  If you are in that group, please accept my deepest apologies.  This blog is focused on telling the story and sharing the lessons I learned during my battle with cancer in 2017.  I have had clear scans since the fall of 2017 and I am currently cancer free.

If you haven’t done so, please do read the “About” section of my blog.   And if you haven’t done so, please do check out my earlier posts.  And now, back to the journey.

On March 1, 2017, the day after the appointment at our local medical center with the resident Oncologist, I went to work.  I had been serving as an executive advisor to a consulting client for about 10 months, and I had been away for a couple of weeks.  We had a lot going on and I was eager to catch up on progress and see how things were going.  I couldn’t think of a better way to spend the day.  Of course, I knew I would need to share what was happening with regard to my health and medical journey. Frankly, I preferred to talk about the initiatives we were working on, but caring people want to know, and my clients are caring people.

It was great to have a day back at work as a buffer between my first and second consultations with Oncologists.  It made real my strong belief that life would not stop just because I was faced with a cancer diagnosis.  I had things to do, people to meet and commitments to fulfill.   I knew that treatment would eventually take up an increasing part of my schedule, and that the side effects would slow me down. But not just yet!

On Thursday, March 2, 2017, Debra and I drove to the Abramson Cancer Center at Penn Medicine in Philadelphia.  I had been familiar with the area where the center was located, as I had attended The Wharton School at the University of Pennsylvania more than 3 decades earlier.  But so much had changed.   What had years ago been a convention center was now the site of a state-of-the-art medical center, including but not limited to the cancer center.

Before heading to Penn Medicine, I told Debra that it was my intent to process what we learned and make a decision by Monday. I felt I needed to be deliberate and did not want to rush too quickly into a treatment commitment.  I told her I wanted the weekend to think through the options. Debra had already determined that Penn Medicine was where I needed to be.  But she did not push that perspective ahead of time.

When we checked in for my first appointment, I was overwhelmed by the magnitude of the operation and the sheer number of people in the waiting room.   Wow!  There were so many people battling cancer.   I didn’t yet feel like I was one of them. I was new and not yet a member of the club.

I had appointments with a medical oncologist and a radiation oncologist.  Because of Debra’s persistence, and the great recommendations from friends, I would be seeing the best doctors for my cancer.

The first appointment was with the medical oncologist.   This is the doctor that serves as the quarterback, the overall coordinator of your care and treatment.  The medical oncologist pays attention to your overall well-being, your body chemistry and the functioning of your organs.  He or she also is also responsible for the chemotherapy and/or the immunotherapy aspects of your treatment regime.

I very much liked the medical oncologist the moment I met him.  He was no nonsense and very much to the point, but at the same time was quite personal and empathetic.   By the time of our first meeting, he had reviewed the PET scan from my local medical center.  He explained that there were four tumors, not just three as I had been told.  In addition to the tumors on my pyriform sinus and lymph nodes, there was a tumor on my left tonsil.  Ugh.  So far, not-so-good.  He then stoically explained the nature of my cancer, the likely treatment regime, the probable long term effects, and the odds of a full recovery.   The seriousness of my disease was made very clear.  It was Stage IV because it had already spread to multiple sites.  He said this was an aggressive form of cancer.  He was particular concerned about the fact that the cancer had already spread through the thyroid cartilage

He said treatment would be a combination of intense radiation and chemotherapy over a two month period.  The details would be worked our over the next couple of weeks after more testing.   The doctor placed the odds of a complete healing at 50%. I asked how we could increase the odds of a complete and total cure.  The doctor explained that we could increase the probability best through radical surgery to remove the voice box and all affected tissue.  I asked: “How much would the probability of a complete cure be increased?” The doctor replied: “well, probably 5-10%.”  I told the medical oncologist that I did even not want a surgeon on the team.  The removal of my voice box would be reserved as a last course of action.  The doctor clearly understood and did not debate my view.  He made a note: “no surgeon on the team.”

Shortly after, we met with the Radiation Oncologist.  The type of cancer I had would require major radiation treatment, according to all medical experience to date.  “Evidence-based” is the term used in the medical work.  So the appointment with the radiation oncologist was very important.  I would be meeting with a radiation oncologist who specialized in head and neck cancer.  (The oncologist I had met with at the local medical center was a head-to-toe generalist.)  I liked the idea of working with a head and neck specialist.  And when I met him, I was immediately comfortable with him.  The quality of the discussion was great.  He exuded confidence while maintaining a realistic perspective.  He shared insights from his experience working with many people with cancer similar to mine.  And his examination was conducted in a manner that gave me and Debra confidence is his abilities.

Selecting your medical team and choosing a cancer center is a difficult and critical part of anyone’s cancer journey.  It is both an analytical and emotional decision.  As I mentioned earlier, it was my intention to spend the weekend analyzing the options before determining where I would pursue medical treatment.  Well, it didn’t work out that way.  Halfway through the appointment with the radiation oncologist, my wife and I looked at each and said: “this is where we need to be.”  It was clear that we would have depth in defense at Penn, with a breadth of capabilities availability at only a few facilities in the world.  We were fortunate.  We were within driving distance of a cancer center that many people traveled from all over country and around the world to access.  The decision was made on the spot: so much for my weekend deliberation plan.  My medical treatment would happen here at Penn Medicine.

Coincidentally, I had committed to serve as a guest lecturer at the University of Pennsylvania in the graduate program for Environmental Sciences.  I began this in 2016, and very much enjoyed the opportunity to teach at this level. The same day I met with the oncologists at Penn Medicine, I would be teaching a class across the street on Radiologic Risk Management.  I was more knowledgeable about radiation than the average cancer patient, and so the radiation oncology and I enjoyed an esoteric conversation about dosage and targeting.  That evening, during my lecture, I was able to use myself as a case study when we talked about medical uses of radiation.  What an unusual and ironic coincidence.  Do you believe in coincidences?

All in all, it had been a good day.  When I turned to my 5 Minute Journal that evening and reflected on the day’s events, I made the following entry:

What was great about today? 

Today was awesome because if Now have a plan and venue for treatment. 

The outpouring of support [from friends and colleagues] and offers to do anything to help.

Debra was awesome

Class was successful 

Safe and timely travels 

What would have made the day even better? 

Not having a sore back and knee

Not learning about the cancer on the tonsil and the cartilage infringment

Exercise 

TTFN   

We arrived at the St. Mary’s medical complex in Langhorne well ahead of my appointment time. The PET scan would be performed in the Outpatient Imaging center.  The waiting area was crowded and the reception desk was busy.  But check-in went smoothly and quickly. It all felt so mechanical as the nurses and technicians went about their routine procedures. Everyone was cordial, even friendly, but the formalities and niceties belied the seriousness and extremely personal nature about what was about to unfold.

A PET scan involves the injection of radioactive glucose (sugar) into the blood stream. The way it works is that cancer cells aggressively gobble up the radioactive sugar, much faster than normal healthy cells.  Because of the cancer cells’ behavior, they will be become readily identifiable through the scan.

“Positron-emission tomography (PET) is a nuclear imaging technique that creates detailed, computerized pictures of organs and tissues inside the body.  A PET scan reveals how the body is functioning and reveals areas of abnormal activity. 

… The patient rests on a table and slides into a large tunnel-shaped scanner.  The PET scanner is then able to ‘see’ damaged or cancerous cells where the glucose is being taken up (cancer cells often use more glucose than normal cells) and the rate at which the tumor is using the glucose (which can help determine tumor grade). The procedure is painless and varies in length, depending on the part of the body that is being evaluated.”  From cancer center.com, Cancer Treatment Centers of America

An IV was started in my arm and the radioactive compound was injected into a healthy vein. Then I waited for about an hour so the compound would have time to circulate throughout my body, be taken up by organs and tissues, and any rapacious cancer cells would take the bait so their presence could be detected.

The actual PET scan took about 30 minutes.  My entire body was the subject of the scan, because at that juncture we had no idea how far the cancer had spread.  We knew it was around my vocal chords.  But where else was it lurking?

After the scan was completed, Debra and I grabbed lunch at the hospital cafeteria. (I must say the variety and quality of the food were both good.  Small blessings in stressful times.)  I recall that our conversation was less than easy, as we were each somewhat lost in our own thoughts, obviously processing the weightiness of the circumstances.  I do remember that we did talk about our son Cameron’s volunteer work at St. Mary’s thrift shop, triggered by a poster in the cafeteria advertising a special luncheon to thank and honor volunteers.

Shortly after lunch, we headed over to the Oncology department.  We would soon have our first meeting with an Oncologist and we would begin to learn more about my specific case and treatment options. Mine was the first appointment in the afternoon.  When we entered the expansive reception area, we were the only souls there. The receptionist was not yet at her station.  I remember looking around, taking in the environment and reading the various materials posted on the walls.  This was a different kind of doctor’s office.  It was clear that it was set up as place where patients could and would spend considerable time.   I remember thinking that it was like a clubhouse, one where membership required a cancer diagnosis.

Soon enough, a nurse showed up, welcomed us to the office and checked us in.  Then we were taken to a very comfortable conference room.  This was where we would meet with the Oncologist.  The doctor showed up within 5-10 minutes.  Taking us a bit by surprise, he immediately told us that he had already reviewed the results of the scan.  Wow!  That was fast.  We had not expected the process to be completed so quickly.   Here we go.

The doctor started with the good news.  The cancer was regionalized.  There was no cancer anywhere else in my body except for my throat.  That was big news, and a wave of relief passed over both of us.  The doctor then explained that there were three tumors.  The primary tumor was on the left “pyriform sinus” adjacent to my vocal chords.  He continued.  The cancer had already spread (metastasized) to both the left and right lymph nodes.   (I could actually feel the tumor on the left lymph node.)   The doctor’s tone and body language were positive as he then explained the likely treatment regime of radiation and chemotherapy. Significantly and memorably, he said: “we would be going for a complete cure.”  These were comforting words to hear.   So far so good.

If you have never heard of the pyroform sinus, well, you are not alone.  Neither had I.  We would soon learn more about this esoteric body part than I ever thought I needed to know.  In case you were wondering, here’s what you find on Wikipedia:

“On either side of the laryngeal orifice in humans is a recess, termed the pyriform sinus (also piriform recess, piriform sinus, piriform fossa, or smuggler’s fossa), which is bounded medially by the aryepiglottic fold, laterally by the thyroid cartilage and thyrohyoid membrane.  The fossae are involved in speech.”

As we digested what we had just learned, the doctor then told us more about the primary cancer. He explained that the main tumor has already penetrated the thyroid cartilage.  This would complicate the treatment and reduce the probability of achieving a complete cure with only radiation and chemo.  Ugh.  We could be faced with a decision about whether surgery should become part of the plan.  “So,” I asked, “what would the surgery entail?”  The doctor responded: “The complete removal of the voice box and other affected tissue.”  Of course, we were still in the mode of maybes, potentials, options, risks and probabilities. Still, this first mention of dramatic surgery was very unsettling.  I did not like that option at all.

After we finished the discussion in the conference room, the doctor took me into an examination room so he could take a look inside my throat.  This examination is accomplished by inserting a tiny camera into a nostril and down the throat.  (I would become quite used to this intrusive inspection over the days, weeks and months ahead.)    As he maneuvered the scope expertly down my airway, the television screen revealed the tumor on the pyriform sinus.   There it was in plain site, visibly abnormal as it was silently creating havoc.

On the wall of the exam room, there was a colorful chart that provided detailed descriptions of the designations we so frequently hear associated with cancer diagnoses. The ‘Stages” of cancers were clearly and matter-of-factly defined and described.   So I asked the doctor, “What is the stage of my cancer?” He said: “Well, we are required to call it Stage IV because it has metastasized from the primary cancer to other tissues.  But I wouldn’t worry too much about the Stage classification, because your cancer is contained in a small region.”  Did I take this as a reassuring caveat?   Not really.

We left our first visit with an Oncologist with much more information than we had when we started the day.  Deb and I were both very pleased by the fact that the cancer was only in my throat and not in any other part of my body.   And we were encouraged by the doctor’s upbeat words about going for a complete cure.  We were grateful for overall results.  But couldn’t help but think about the part of the discussion concerning the potential for surgery.   While we both knew that it was too soon to jump to conclusions, and we tried to stay a positive, it did weigh heavily on us because of the likely ramifications.

But no decisions had been made.  We had not yet committed to a cancer treatment center or an Oncologist.  We had only one consultation under our belts.  We knew it was important to keep open minds. What perspectives and options would a second opinion produce?  I did not want to move too quickly and end up in a situation where I wished I had made a different choice.  The cancer was in my body and affecting my life.  I was determined to be in control of my healing and would make decisions according to my values and analyses.  I would seek input from “experts” and I would continue to test what I learned against the actual experiences of others who had walked this path.  Feeling a sense of control gave me energy and self-confidence.

As part of my 5 Minute Journal routine, on most days I made an entry at the end of the day, reflecting on the day’s events.  I focused on one positive-focusing question:  “What was great about the day?”  Here’s what I wrote in the evening of February 28, 2017.

The special support I had from Deb.

The great news that the cancer is local/regional

Meeting Dr. Flannery

All the support from friends

And so, as the day of the first PET scan and Oncologist consultation came to a close, I had a much better understanding of my condition. In a couple of days, I would have my second appointment and consultation.  That would be at the Abramson Cancer Center at Penn Medicine in Philadelphia on March 2, 2018.

TTFN

So I take you back again to February 2017.  Within a week of my cancer diagnosis, next steps are set and initial appointments are arranged.  Debra had done all the hard work, making many phone calls necessary to get the appointments we wanted.  And so, I could focus my attention on the beautiful scenery of the Antarctic Peninsula and enjoy the continuous marine wildlife sightings.

We made two different landings each day, one in the morning and one in the afternoon. Inflatable Zodiacs served as our water taxis from our ship to the shore.   At every site we visited, thousands of penguins greeted us – actually, the penguins pretty much ignored us, going about their business in spite of our intrusion into their rookeries.  There were a few, however, who were very curious and, when we stayed very still, came close to explore our clothing, cameras and backpacks.   My daughter Krista was in heaven, as the Penguin is her favorite wild animal.

I found myself fully immersed in the trip and totally distracted from the cancer and what lay ahead for me.  As I have said in earlier blogs, a cancer diagnosis doesn’t and shouldn’t stop you from living in the moment.  So, if you, a friend or loved one face such a diagnosis, try not to let it consume or define you or them.   Here is an excerpt from my journal entry on February 22, 2017:

“Today is the only day I have.  What I do today is all that matters.  I choose to feel at peace.  I choose to be optimistic.  I would rather have 100 days of bliss than 10,000 days of being negative or suffering emotionally.”

I’d love to write more about the wonders of Antarctica and our incredible experience there, but I feel I must move on to the next part of the journey.  Before I do, let me share some a couple more excerpts from my journal.  These entries were made high over Argentina on February 26, 2017, as we started the long trip back to the US.

“It was interesting and inspirational to meet couples in their 70s and 80s enjoying travel and adventure together.  It would be great for Deb and I to be the ones being the inspiration to others some day.”

“The guests spoke little of their careers, professions or businesses. From all walks of life, they were aligned around the adventure and the experience. “ 

But on the same page, it was clear that I was thinking again about what would begin soon after I arrived home.

“I have not journaled for several days, though I have been faithful with the 5 minute journal.  Today I awoke with a peaceful easy feeling, at ease with regard to the medical battle that lies ahead.  My diet, my exercise, my meditation, my attitude … they are all in the mix. Yesterday I could sense my voice trying to come back.  And so I have raised my expectations … or should I say my goals … to achieve complete recovery of function.  I will talk again, and I will sing again.  Why not go for it all?  I am ready.”

We arrived back in the US on February 27.  Debra picked us up at JFK, but we had to drop Krista at another terminal so she could catch a connecting flight back to Chicago.   We enjoyed only a few minutes with all three of us together.  We hugged and set Krista on her way, as she needed to be at work the next day.  She was back to her career as management consultant, kind of following in Dad’s footsteps but charting her own path along the way.   And I would be heading to the beginning of seemingly endless time spent at hospitals, medical centers and doctors’ offices.

Debra and I were excited to be back together.  She had told me that, for her, my global travels were always a source of pride, excitement and worry.   This trip took that combination to a whole new level, with a lot more worry than most of my business trips…which, of course, were always to inhabited continents.   There was so much to discuss on the ride back home.  Our discussion mostly went back and forth between the trip and her research and exploits getting appointments arranged.  I must admit, I felt like I had returned from another planet.  And I also felt a mega dose of reality falling on my shoulders.

Debra and I both realized that, the very next day, we would know a lot more about my cancer.  Even though I still had a positive attitude, the “what-if?” questions were once again top of mind.  I would have a PET Scan that would show whether I had a little cancer or a lot, whether the cancer was just around my voice box or all through my body.   The uncertainty at that point, just ahead of getting the PET scan, was a bit unsettling.

I was so very glad that my PET scan would happen within 24 hours of my arrival back in the US. I would not have wanted to have a long time between arrival back home and the scan. Without the distractions of Antarctica or international travel, I knew I would have to work harder and stay focused to maintain my peace of mind.  Funny, in the early morning on February 27, when Krista and I were flying from Buenos Aires to New York, I included the following affirmation in my 5 Minute Journal:

“I embrace uncertainty.  I embrace the X factor.”      

It was harder to live this affirmation later that same day.  Indeed, I don’t remember much about the afternoon or evening of February 27. I tried to reconnect with my son, Cameron, who typically gives me the brush-off when I first return from multiple days away.  I do remember talking with my son, Connor, who lives and works in western Colorado.  I knew he was worried about me and afraid for the future.  I wanted to assure him that I would be fine.  I know I shared with him the most positive words one could say at such a time.  But I am not sure that words alone could limit his worry or fear. It was a very emotional time. I think I busied myself with unpacking and reorganizing after such a long trip.

I awoke early on the day of that first PET Scan.  It was February 28, 2017, 15 days after the initial diagnosis.  I mediated that morning using the CALM app on my phone. It was my 86^thconsecutive day without missing a session.  I also made entries in my 5 Minute Journal (which I keep in my Evernote app).  I’ll end this blog post with excerpts from the entry I made that morning:

What am I grateful for?

I am very grateful that I live in an age, day and place where I have access to the best available medical knowledge and technology.

What will make today great?

Completion of scan without stress or issues.

Affirmations

I do everything necessary to beat the cancer

The power of intention is a force in the universe, and I intend to achieve 100% healing

I am strong and I am a source of strength for people who know me

TTFN

It has been several weeks since my last post, and I must admit, it is because I have been very distracted.  I had fully intended to continue chronologically with my story and the lessons I learned along the way.  But the truth is I just needed a break.  I needed to pause from reliving the journey. I did not want to think about cancer for a while.  It was surprising to me that I simply was unable to just continue writing. But, as a mentor recently commented to me, it is all still very fresh and very personal.   I allowed myself to become distracted from thinking about cancer, and it was good.

As I prepared to start writing again, I realized that there was a relevant lesson in my recent experience. In reflecting back on the first weeks after my diagnosis, I was reminded of how I actively pursued “distractions” to keep my mind from being totally focused on and preoccupied with cancer. And I continued to do so through out the treatment and recovery process.  Even as my body deteriorated under the stress of radiation and chemotherapy, I kept my mind focused on things of interest and importance to me.

If I think back to where I left the story, which is still on the adventure cruise in Antarctica, I recall how I immersed myself in learning about the wildlife, the environment and the history of man’s exploits in this remotest of continents.  When I had free time, I prepared notes and slides for classes I was committed to teach at the University of Pennsylvania.   It was enormously helpful to be able to occupy myself with subjects other than cancer.

I have used the phrase “battling cancer” conjuring up the image of war.  When I think of soldiers awaiting battle, I think of how important it is to have ways to occupy their minds, to rest and recharge, and to stay sharp. When you think about yourself or a loved one battling cancer, the need is equally important.

If you are spending time with a person battling cancer, you can be a source of positive distractions. If the cancer fighter wants to talk about their experience, by all means engage and indulge the conversation.  But recognize that the person continues to have interests, plans and needs, and does not want to be singularly defined by the cancer.

In the early days and weeks after diagnosis, it is easier to do things that can take your mind off of the cancer.  It just takes discipline and will power to do so.  I know from my own experience, however, that it gets harder as you proceed through treatment, especially if treatment includes radiation and/or chemotherapy.  It gets harder to concentrate and it can get harder to read for extended periods of time. Still, there are ways to be gainfully distracted.  For me, podcasts, the Food Channel, Ted Talks and the Stanley Cup playoffs were effective even when times were tough.

So, what has kept me distracted during my short hiatus from writing for this blog?   I had some wonderful distractions.  But I cannot honestly blame any or all of them for my not writing or publishing a post for a few weeks.  Still, I must share some of the excuses I could have tried to use.

My youngest son, Cameron, turned 21 on March 24 and we had a big celebration.  Those of you who know Cameron will understand when I say that he was the star of his own birthday show.  Cameron sang and danced, and entertained his appreciative guests with seven costume changes, which brought Elvis, The Greatest Showman, Johnny from Sing, School of Rock, Grease, Mary Poppins and Mama Mia to life.  Down Syndrome has never been a disability for Cameron.   Wow.  I am so thankful for my overcoming cancer and being here to witness this incredible celebration of life.

I enjoyed a week in Beaver Creek, Colorado with my wife, Cameron and four very special friends.  We enjoyed plenty of good food, drink, music and laughs.  I hit the slopes and skied 7 days in a row.  I was able to do so because of the expertise of my awesome trainer, Christian, who has guided my physical recovery since last July.  (In fact, I had 23 pain-free days on skis this year.)  I am so thankful for the level of fitness I have been able to achieve in a relatively short period of time.

I have also been very busy with current and planned business ventures.  (I don’t believe in traditional retirement.)  My management consulting and executive advisory work is my most substantial undertaking.  I am equally excited about plans for a Recovery, Performance and Longevity center, aimed at bringing cutting edge technology to help people heal, to achieve high levels of performance, and to maintain functionality, flexibility and strength through their 80s and 90s.  I am passionate about this area, and I look forward to helping to improve the lives of many people.  I intend to leverage my own experience is a positive way.

I feel better now.I am ready to get back to telling the story of my very different journey. Next time we will pick up the story with my return from Antarctica, my first Pet Scan and my first meetings with Oncologists.

TTFN

During our crossing of the Drake Passage, I spent several hours each day researching the web for information about throat cancer. I was seeking to understand what I was in for.   Before we arrived at the Antarctic Peninsula, I found myself overloaded with data but still starving for information. It was very clear that I needed to stop doing research and just enjoy each day. On February 17, 2017, I wrote in my journal:

“I am very excited being on board an expedition cruise to Antarctica. What a perfect venue to contemplate my next chapter – a battle to conquer cancer. I am ready for the battle, and I fully intend to win the battle. How do I feel? I am paying a lot of attention to my throat. Maybe it is my imagination, but it seems that I can feel a ‘disturbance’ when swallowing. I have no pain. I have mild stiffness in my neck. My appetite is good. My overall well-being is good.   I will eat, exercise, do some chores, listen to a lecture, have some tea, exercise, listen to another lecture, attend the Captain’s Welcome Party, dine, make new friends, listen to music, and then have a great night’s rest. Tomorrow we arrive in Antarctica!”

But my journal shows that my hunger for useful information persisted nonetheless. At the end of the same day’s journal entry, I wrote down several questions that must have been top of mind.

“Ketosis – does it help [when] battling cancer?   Ketogenic diet?

What are the best supplements?

Acupuncture?

Meditation/yoga?”

While I knew I was more than likely going to be receiving some form of mainstream medical treatment, I wanted to know what other things I could do to help with healing and to mitigate the side effects of the treatment regime. This would continue to be an important part of my journey over the next several months.

The question about ketosis and a ketogenic diet was of particular interest to me. As it turned out, I had been eating a ketogenic diet for a couple of months before being diagnosed. This diet emphasizes getting the majority of your calories from fat, consuming a very targeted amount of protein, and severely restricting the intake of carbohydrates. I was impressed with the fitness results some practitioners of the diet had achieved. My early experience with the ketogenic diet had been great. And while it hadn’t been relevant to me when I decided to try it, I had read much about how the ketogenic diet could be effective when battling cancer. Now it was the most relevant question. I had found a lot of supportive material during my research. This topic is worthy of a separate blog and I promise to come back to it later. For now, let’s just say that paying attention to what I was eating allowed me to feel some sense of control and that I was taking action. On February 19, 2017, I recorded the following entry in my journal:

“Today I have a combination of thoughts and feelings that is hard to describe. I have a slight headache and a mild sore throat (a little discomfort swallowing). I feel like I should be doing something to actively battle the cancer. The only active thing I can do here is to eat the ketogenic diet and try to get my body into ketosis…”

It was very important for me to feel that I was taking control and doing things proactively. Set aside for the moment the question about whether eating ketogenically is an effective cancer fighting method. I believed that it could and would help. And I committed myself to it as a part of my plan of action. Believing and feeling that you do, in fact, have some control over what is happening in your body is a source of power.

What I would eat was something I was in complete control over. It was something I could focus on, even while I was on a boat in Antarctica. The ketogenic diet would be one component of my battle plan.   I made a commitment to stick to it throughout my treatment.

The lesson here is that cancer can easily cause you to feel out of control, like it is something that is happening to you, which you can do little or nothing to change. That is not a good mental or emotional state to be in. My experience showed me how very important it was to believe that there were things I could do that would be beneficial. I did not allow myself to feel like a victim or indulge in “why me” thinking. Being able to take action, make certain changes and adopt new habits gave me a sense of being in control.