Thriving in Challenging Times

Three years ago, my life was disrupted by a cancer diagnosis.  I had to fight a battle like none I had ever faced before.  Today, my life is disrupted by the Covid-19 pandemic.   This time, it is not just my life that is disrupted, but literally that of every person on planet earth.   We are all called upon to do our part in a war against an invisible enemy.  A war not of our choosing.

How are you faring in the midst of this crisis?  I know that many people are afraid for themselves and for their loved ones.  Fear and uncertainty can be paralyzing.  But it doesn’t have to be that way.  I want to share some thoughts, feelings and ideas about dealing with these challenges.  My intent is to encourage and uplift, not by minimizing the pain and suffering which will befall some of us and people we know and love, but by drawing on the wisdom of others, tempered by my own life experience.

Be in control of your thoughts.  As you think, so will be your experience.   Our brains cause us much distress.  We are wired to be on guard and ever vigilant about dangers that could be just around the corner.

There is every reason to do what it takes to mitigate the risk of corona virus infection.  Follow the guidance of the medical experts and government authorities.  Take necessary and appropriate actions.  But, recognize that worry can become all consuming.  Expecting the worst, leading to obsessive negativity, causes very real mental and emotional pain.  As Seneca, the famous stoic philosophy wrote, “we suffer more in the imagination than reality.”

For me, there are parallels between the current crisis and what I experienced when I was battling stage 4 throat cancer.  What I realized back then was that I had to decide how I was going to think about the challenge I faced.  Did I have times when I thought about the worst possible outcome?  Of course, I did.  I knew that was a possibility.  But it was not where I put my focus.  Instead, I put my energy toward learning all I could about beating cancer and taking care of my whole self during the process.  And I thought a lot about what I wanted to be and what I wanted to do on the other side of the battle.

Don’t just focus on things that could go wrong.  Your mindset matters.  Ask yourself: have you ever been able to accomplish great things when you were in a fearful state?  Of course not.  So, muster up the courage to move forward.  Search for inspiration and fuel your mind, body and spirit accordingly.

Recognize that you can control your efforts and your attitude.  Who do you want to be and what do you want to accomplish when this is over?  Use this social distancing time well.  Become a better version of yourself.

“The Pessimist Sees Difficulty in Every Opportunity. The Optimist Sees Opportunity in Every Difficulty.” – Winston Churchill


“All Systems Were NO-GO”

It was the middle of April 2017.  After 4 weeks of radiation and chemo, my bodily systems began to crash and burn.  I had completely lost my voice.  I had a persistent bad taste in my mouth and had lost all interest in food.  It was nearly impossible to swallow.  My bowels were locked-up.  There was severe pain at both ends.  Eating, drinking, talking and sleeping were become very difficult.  It was during this time that some friends and family really started to worry.  My wife was really scared.  This was the beginning of the last three weeks of my treatment.  Nothing was easy during this period.

On top of all that, I experienced another annoying side effect: nosebleeds. I was awakened in the middle night feeling like I was drowning.  It was my own blood.  It took several hours to stop the bleeding.   Unfortunately, the nosebleed came back persistently, even while I was receiving treatment.  It made it more than a little challenging to lay still during radiation treatment.

Things turned dramatically worse quite suddenly.   It was Friday night, April 14, 2017.   Coughing and sneezing attacks came upon me and grew progressively worse.  My nose started bleeding profusely and despite my best efforts, I could not get it to stop.  And then the violent vomiting started.  Debra called our close friend Joe, who jumped in his car and came to our house as quickly as he could.

Joe, an experienced health care practitioner, recognized that the bleeding was coming from broken blood vessels in my nose.  After trying a number of things that failed to stem the bleeding, we called the Oncologist on-call who said get to the Emergency Department at the local Hospital.  I was hurting badly.  Only my arms and legs were spared from pain.  Without intervention, there was no way I would be able to sleep.

Going to the ER on a weekend night is like going to the airport during the Christmas holiday season.  Needless to say, it was quite busy.  The nosebleed was resolved by cauterizing the broken blood vessels.  (Look it up – it’s kind of like “welding” your flesh.)  I was dehydrated, so some IV fluids were brought on board.  That helped a lot.  The details are foggy now, but I am certain there were some strong meds for pain.

After several hours in the ER, the doctor on duty said that there was nothing else to be done.  Joe drove me back home.  I was no longer bleeding, coughing or sneezing.  I was not feeling great, but I was relatively tranquil – probably just exhausted and enjoying the benefits of the pain meds.  And so, with the help of a humidifier and special lozenges, I was able to get some sleep.  It was a fitful sleep, as it seemed I awoke every 20-30 minutes.  I was drinking as much water as I could, even though it felt like broken glass in my throat.  And so frequent trips to bathroom added to the interruptions.  On one such trip to the bathroom that evening, I actually fell asleep while standing.  I awoke on the floor with severe pain in my knee.  I had hyper-flexed my leg in the fall to the ground.  The only good news was that the pain in my leg took my mind off the other discomforts.

The next day was dominated by my battle with constipation.  I tried everything.  Nothing brought relief.  It was also becoming more and more difficult to swallow anything.  One of the constipation therapies I tried seemed to close off my throat.  Ugh.  It was a

I spared my wife much of the hour-to-hour dreariness during the night by staying in our guest room.  But during the day her worried state grew visibly worse.  She said that she felt helpless and unable to do anything to help.  Somehow, I survived the weekend without going back to the local hospital.  But just barely; enough to make it to my next appointment at Penn Medicine on Monday.  Joe returned to my home early on Monday morning to drive me to my appointment.

On the way, Joe told me that I needed to be hospitalized.  He said he would encourage my doctors to admit me to the hospital.  (Actually, I think his words were something like “there is no way I am bringing you back home in this condition.  They WILL admit you.  They MUST admit you.”)  Joe was right.  I think we were only 3-4 minutes into my appointment when the Physician’s Assistant picked up the phone and called the hospital to arrange for me to be admitted.   The Medical Oncologist had warned me that this might happen.  Weeks before, he had told me that the side effects of the radiation and chemo could cause my systems to shut down.  And so, here I was: a little more than halfway through treatment and my bodily systems were failing.  The only good news is that the treatment was working; the tumors were shrinking.

I was relieved to be admitted to the hospital.  I knew I could not manage at home in my condition and my experience over the weekend.  My body was going to need all the help it could get if I was to be able to continue the treatment that was killing the cancer.

In my next entry, I will discuss “surviving in order to heal,” which is how I came to view my time in the hospital.

One additional note: I know it has been a long time since I have posted to my blog.  As I have shared multiple times in the past, it became difficult to continually revisit the challenging times in order to write these posts.  I didn’t want to go back there anymore.  I was moving on.  But recently, a very close friend of mind was diagnosed with a lymphoma.  This kicked me in the butt.  And so, I will work to meet the commitment I made back when I was just starting my own treatment.  I will continue to try use my experience battling cancer to help others.

“When the Easy Part is Done”

I was back at Penn Medicine last week for my first check up and scan in four months.   The results were all good.  My scan was clear and my lab results were all in normal range. Cancer is in remission 17 months since my treatment ended.

I seldom think about my time of active treatment, back when my days were dominated by the impacts of chemotherapy and radiation.  Being back at the cancer center caused me to reflect on those days.  I turned to my journal to help me recall details that had faded from my memory.  Let’s go back to the spring of 2017.

The first couple weeks of chemo and radiation treatment were relatively easy, at least with regard to the physical side effects.  Yes, I was more tired than usual and my energy level was down.  And the chemo was adversely affecting my kidney function.  But I was still able to breathe, swallow, eat and talk.  At the end of two weeks of treatment, I had little pain or discomfort, was able to exercise and, in fact, my voice was stronger than it had been prior to the beginning of treatment.

My doctors told me to initially expect improvement as the treatment began to work on the tumors in my neck.  There was no doubt that chemo and radiation were effective against cancer cells.  That’s the good part of the story.  The bad part is what chemo and radiation do to your good cells and normal bodily functions while they are killing the cancer.

By the middle of the third week of treatment, it was evident that two of the tumors were measurably smaller.  It was working.  At the same time, the really difficult part of the journey was beginning.  Victory over cancer does not come without casualties. On April 5, 2017, I wrote:

“One of the first casualties is my ability to taste food.  Everything tastes like cardboard or dirt.  This is an expected but still very unwelcome side effect of the radiation treatments.  The doctors soberly told me that my sense of taste should come back in 3 or 4 months [after the end of treatment].”

One of the most common and painful effects of radiation treatment in the area of your head and neck is mouth sores. By the third week of my treatment, mouth sores were in full bloom.   Swallowing was becoming more difficult and painful.  My food options were becoming more limited by texture, and staying true to the Ketogenic diet was becoming harder.

It was during the third week that it became necessary to start using prescription medications to manage the pain. Without the meds, even drinking water became more like trying to swallow broken glass.   But taking the pain meds every day came with what became one of the most challenging side effects – CONSTIPATION.   Ugh.  Hard to get stuff in, hard to get stuff out.  “Very uncomfortable” is a gross understatement.

When I met with my Oncologists during the third week of treatment, my voice was very raspy and weak.  As I reported my symptoms, one of my doctors summarized the circumstances very well when he told me “The Easy Part Is Over.”  He was sooooo right.

Readers of my CaringBridge journal will remember my writing about how “the cure is worse than the disease.”   My doctors had accurately predicted that the adverse side effects of treatment would start after 2 or 3 weeks.  I understood by then why my medical team was so focused on my weight and nutrition.  It became nearly impossible to eat solid foods. Even soft foods were difficult to swallow.

I was supposed to drink 3 quarts of water every day.  But water became the hardest liquid to swallow.  It often felt like there were sharp objects in my throat when I drank water. Swallowing became such a challenge that I found myself deliberately not swallowing unless I was trying to eat or drink.

I was fortunate in that I had not yet experienced oral thrush.  Thrush is an infection caused by candida, which is a yeast-like fungus that lives in the gastrointestinal tract. Most people have candida in their mouth and throat, where it usually doesn’t cause any problems. But a weakened immune system allows for more rapid growth of the fungus. Thrush symptoms include a white coating and red inflamed areas in the mouth and throat.

Oral thrush is a common side effect of cancer treatments. Radiation and chemotherapy treatments harm the body’s mucous membranes and weaken the immune system. This makes it more difficult for the body to fight off the candida infection. Head and neck cancer treatment comes with a very high risk of oral thrush. My doctors gave me prescription anti-fungal (“antimycotic”) medication aimed at reducing the risk of thrush occurring.  It doesn’t work for all patients, but it worked well for me, at least through the first four weeks.  Once thrush occurs, it is very difficult to get rid of.  And it is painful.

The easy part ends a lot sooner that you anticipate.  An important lesson is that it is very important to follow the guidance of our medical team.  They know and understand the side effects of traditional radiation and chemotherapy treatments.  And they give you medications to delay, limit, and treat the side effects. Use them.  Don’t try to “tough it out” or hope that the side effects won’t hit you.  They will.

In my next post, I’ll discuss the physical deterioration that occurred during week 4.  The easy part was definitely done!


The Power of Why

I have not posted in this blog for quite some time.  As I approached the one year anniversary of my first clear scan, I found it challenging to take the time to reflect back on my active treatment and recovery period.  If you’ve been reading my blog for awhile, you know I’ve been here before.  Over the past couple of months, I simply did not want to relive my cancer experience which I must do each time I sit down to write a post.  The truth is I just wanted to move on.

I knew I had to get back to working on this blog.  But I needed to dig deep for the motivation to do so.  And I needed to remove any barriers to my writing about and sharing my experience.  To do, I need to get back to “why” I was doing this. 

I had been writing my posts chronologically, relating my journey and lessons learned sequentially.  I wondered if staying true to the timeline may have contributed to my loss of focus in writing new posts. And so, I decided I would free myself from the self-imposed adherence to strict chronological story telling.  While I would continue to provide historical context and describe the stage of my journey, as I resumed writing I would allow myself to address thematic topics that transcend specific dates and times. This flexibility would help.  But would it be enough to get me re-motivated to work on my blog.  No, it would not.  Doing so would require me to recall “why” it was so important.  

While I was going through the diagnosis stage, the evaluation of options, and actual treatment and recovery, I had continually thought about the opportunity I would have to help others because of my experience.   It was one of the most powerful things that kept me positive and optimistic even when I was in excruciating pain and my body was being ravaged by the effects of radiation and chemotherapy.  It gave me a sense of purpose.  I knew that I had to win, and that I would win the battle so I could be helpful to others.  

People ask me now if I was afraid that I would not survive.   Whenever the thought arose that I might not beat the cancer, I would bat it away.  I quickly replaced it would a different thought.  I believed deeply that my cancer would give me the perspective, credibility and, indeed, the right to offer advice, suggestions and recommendations to others going through similar circumstances.  Without going through this very different journey I would be unable to do so.  That belief persisted through the toughest times.  As I started working on this post, I was fully connected with that belief.

When bad things happen to you or your loved ones, it is common to ask “why?” or “why me?” questions.  These can be tortuous questions.  In my life, I have found that it is important and beneficial to change the questions so as not to be consumed by them.  For me it was asking “what blessings can come from this experience?”  I needed to attach meaning to what I was going through.  As I have shared before, I latched on to the belief that my cancer battle would allow me to help in ways that would only be possible because of my personal experience. 

It wasn’t just a passing thought.  And it wasn’t just a recognition of the potential opportunity.  Instead, it was a strong sense of duty and obligation to share what I was learning, which in turn gave me confidence that I would win the battle.  Over the past few weeks, I recalled that belief and the state of mind that had initially driven me to share my experience.  I knew I needed reconnect with the meaning I had previously attached to writing this blog.

Have you read “Man’s Search for Meaning” by Victor Frankl?  I am sure that many of you are at least familiar with the title, the author, or its core message. This influential book chronicles Frankl’s experiences as an Auschwitz concentration camp inmate during World War II, and describes how he used a sense of purpose to help him survive the ordeal.  According to Frankl, the way a prisoner imagined the future affected his longevity.   Frankl focused his on the belief that by surviving he would be able to tell the world what happened so that it would never happen again.

Frankl outlined a psychotherapy method he called logotherapy.  Logotherapy is based upon the belief that striving to find meaning in life is the primary, indeed the most powerful, motivating and driving force in human beings..  (Other methods are based on the belief that power or pleasure are the drivers of human behavior.)

Now please know that I do not equate my cancer battle with anything as bad as what Frankl endured as a concentration camp prisoner.  Not even close.  And, I did not consciously think about Frankl, his book, or logotherapy at the time of my diagnosis, treatment or recovery.  But as Frankl’s theory would suggest, I did identify a purpose to feel positively about, and then imagined the outcome it would bring.  I remember thinking that I might write a book to share my experience and lessons learned.  Soon after my first clear scan, exactly one year ago, I decided that a blog would be more efficient and more effective, and a faster way to share my experiences.  A book could always follow the blog, leveraging the collection of posts that would accrue.  

I attribute my determination and positive attitude during my treatment and recovery, at least in part, to the sense of positive purpose I had created.  I still feel a sense of obligation to be true to that purpose.  I now need to follow through in order to demonstrate my gratitude for the outcome that holding that purpose helped to achieve.  

I have missed working on this blog.  But I am still working on renewing my “why”.  I lost momentum and my motivation because I lost sight of that why.  I will get back to sharing my story and the lessons I learned.   

I appreciate your encouragement. 


My First Experience with Side Effects

I thought I would avoid, or at least minimize, the many undesirable side effects of cancer treatment.  As I wrote in my previous blog, I tried fasting to avoid the nausea that often arises shortly after chemo and radiation treatments.  It worked well for me, at least at first.  I did not get nauseous right after my first treatment.  I was feeling great on day 2. Things seemed to be off to a good start.   But as I was shortly to learn, chemo surprises you, and not in a good way.
My treatment plan was initially designed such that I would only receive 3 chemo treatments 3 weeks apart.  (Radiation was 5 days each week,)  I really liked this part of the plan because of the famously awful side effects of chemotherapy.  But in order for this to be effective, the dosage would be 3X what it would have been with weekly treatment.  The nature and severity of side effects are related to the dose, meaning that higher doses cause more symptoms and more severe symptoms.  The risk of damaging the kidneys is significant and therefore required close monitoring.   As a precaution and to reduce the risk of kidney malfunction, I would receive intravenous hydration for two days following chemo treatment.
I really felt good on day 2, but I was prepared for side effects to hit at any time.  My doctors had given me prescription medications for nausea and advised me to use them at first hint of trouble.  By the way, both radiation and chemotherapy count nausea as a likely side effect.   Based on what my doctors told me, it seemed that it was only a matter of “when” not “if” nausea would hit me.
Here are some of the common side effects caused by chemotherapy:
Hair Loss
Easy bruising and bleeding
Loss of appetite
Hearing problems
And here are some of the side effects of radiation treatment, specifically when the radiation is aimed at one’s head and/or neck:
Skin problems (redness, blistering, peeling)
Hair loss
Dry mouth
Mouth and gum sores
Worsening of hoarseness
Trouble swallowing
Loss of taste
Hearing problems
Tooth decay
I knew about the many and varied side effects before I began treatment.  The good news is that not every person experiences each and every side effect.  The bad news is that no one escapes all of the potential side effects.  Managing side effects is the most significant challenge you face when going through traditional radiation and chemotherapy treatments.  I did a lot of research to find things I could do that could reduce the type and severity of side effects I might experience.  One area where I was very successful was in care of my skin.  I used a combination of calendra, organic aloe, lavender and organic coconut oil to reduce and mitigate the effects of radiation to my face and neck. I applied them twice per day, several hours before treatment and then again before going to bed.  (You cannot apply them shortly before treatment, as they could potentially hinder the effectiveness of the radiation.)
Now, let me take you back to that first week.  As I noted above, I was feeling good two days into treatment.  My appointment on day 3 was scheduled in the evening, and so I planned to work during the day.  I made arrangements to ride with a colleague who was working with me on a consulting assignment.   It would be a 90-minute to two-hour drive to the client site, depending on traffic.   We would work during the day and then my colleague would drive me to Penn Medicine for my treatment   But the plan was disrupted the night before when my colleague called to tell me that he had developed a severe cold and was coughing and sneezing.   Clearly I could not drive with him and risk exposure to what he had contracted.  Ugh.
I very much wanted to visit my consulting client and help advance the important initiatives we were working on.  I decided I would drive myself.  After all, I was feeling great and I was determined to continue doing what I enjoyed during my treatment.   My wife questioned the prudence of me driving myself.  But I insisted that I would be fine.  I awoke early on Thursday morning, March 23, 2017, feeling confident and looking forward to working with my client.  Little did I know what I would experience as the day progressed.
About 45 minutes into the drive to my client’s office, I began to feel very tired.  The feeling came on suddenly as I cruised along in rush hour traffic on the PA Turnpike.  My eyes became heavy and I recognized hat I needed to rest.  Fortunately, a rest stop was just ahead.  I pulled off, parked my car and proceeded to close my eyes.  When I opened my eyes and looked at the clock, I realized that I had slept for 40 minutes.  “Uh oh!”  Something was happening and it could only be one thing.   This was a delayed side effect of chemotherapy.  As I had read about the experience of other, fatigue after chemo often occurs a couple of days after treatment.
After my respite, I felt well enough to drive again and completed the trip to my client’s office.  It was my first day at work since beginning my treatment. I wanted things to be normal.  I put on a good face, but I knew, and others knew as well, that I was not at full strength.  I was good for a few hours, but as the day went on, I felt my energy level dropping.  Then I started to have the first signs of nausea.  I immediately started taking the anti-nausea medications.
By early afternoon, my eyes were heavy and I worried about the driving that lay ahead for me.  I needed to drive to Penn Medicine for my appointment and the drive home.  It would be at least a 90 minute drive to Penn Medicine and then another hour ride home.  My wife had been right.  My decision to drive myself was not well made.
I called my wife and told her what was happening. I figured I could make the drive to my appointment but that I would simply not have the energy to drive home after my radiation treatment. My wife agreed to take Uber to the station and take the train to meet me at Penn Medicine.  Then she would drive home.   It seemed like the best alternative.
The drive to Penn Medicine that day was very difficult for me.  I had underestimated how hard the fatigue had hit me.  My eyes continued to (BE) heavy and I struggled to stay alert as I navigated rush hour traffic on the infamous Schuykill Expressway in Philadelphia.  (I never understood how this road could legitimately be called an Expressway, as there is nothing “Express” about it.)   The drive took a full two hours that seemed like an eternity.  But I made safely, happy that my wife would be there to drive me home after my treatment.
Day 3 was very difficult.  It was a wake-up call for me.  The physical challenges associated with the chemotherapy and radiation treatment were very real and would have a significant effect on my activities.  I wrote about how I felt in my Caring Bridge journal: “The truth is that I was feeling like a truck hit me.  I can’t remember feeling as tired as I was last night.  And I didn’t feel much like eating anything because of the – shall we say – discomfort in my stomach.”
I was feeling much better on Day 4.  My appetite had returned and my energy level was a bit higher.  But I had learned an important lesson.   I was not immune to side effects and despite my best efforts, the treatments would wreak havoc with my body.  The challenge would be to maintain emotional, mental and spiritual positivity even as the physical issues got worse.

Remembering the First Day of Treatment

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.


Preparing for the Start of Treatment

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”


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!



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.




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


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.