A Very Different Journey

During our Covid-19 lockdown, my wife and I have been working on cleaning out more than 4 decades of stuff.  (Debra and I just celebrated our 40^th wedding anniversary, so we had accumulated a lot of stuff.) As I open drawers, closets and boxes, and I unearth stuff that has not been touched in quite some time, I am generally finding things that make me wonder “why was I keeping that?”  I am also digging up mementos, memory-jogging photos, papers and would-be keepsakes.  Among these, I found numerous newspapers from over the years and around the world, obviously intended to remind me of some past adventure or notable event.  Frankly, there are too many to read.  But I have taken the time to read a few.

Reading what was yesterday’s news through the lens of history can be an enlightening and thought-provoking activity.  There are some relevant lessons from this exercise as we confront fears about Covid-19 and worries about what comes next.  Take some comfort in reflecting on how much change actually occurs in a relatively short period of time.  Change is the only thing that is certain.

Here are just a couple of examples.

I am not sure why, but I had the Money section of a USA TODAY from Thursday, July 22, 1999.  The Dow Jones Industrial average was at 11,003 and the Nasdaq was at 2761.  It was the dawn of the internet age and e-business was just gaining momentum.  (Think about that for a moment. It was only twenty-one years ago.) I was particularly fascinated by this headline:

“AOL, Amazon Run Net Gamut; Both Healthy but AOL earns big, retailer’s in the red”.

At the time, AOL was the big player.  What?  Yep.  Amazon was still losing money, and AOL was the driving force in getting consumers connected online.  The article stated:

“America Online cemented its standing Wednesday as the Internet’s blue-chip company while the leading Web retailer, Amazon.com, saw losses widen despite soaring sales.”

Less than 6 months later, in January 2000, AOL had a valuation of $163 billion and announced a merger with Time Warner to form a business valued at $350 billion. It was the biggest merger in history.  The combined enterprise predicted 33% annual growth for the next few years.  They were on a roll.  And the business press lauded the strategy and the combination. But that was not to last.  The merger was finalized in 2001 after an exhaustive regulatory review.  Meanwhile, the post Y2K dot-com crash brought high-flying tech company valuations down to earth.  Many did not survive.  The AOL Time Warner merger, once hailed as genius, was a colossal failure.  The combined entity lost billions of dollars in shareholder value, as the AOL portion of the business was failing.  In September, the board of directors approved the removal of AOL from the name, and the business became simply Time Warner.  Fast forward to 2015.  AOL was acquired by Verizon for only $4.4 billion, losing over 97% of its value since the merger with Time Warner.

On the other hand, over the same period, Amazon had a different trajectory.  I don’t need to tell you where Amazon is today.  In September 2018, Amazon’s market valuation crossed $1 trillion.  It is around $1.2 trillion as I write this blog.   Of course, Amazon’s path wasn’t straight up.  Indeed, during the dot-com bust, Amazon saw its stock price tumble month after month through late 2001.  Amazon lost 90% if its market value in 2 years.  But no worries for those early investors who held on.  What is the value today of a $1000 invested in Amazon at the time of its IPO in May 1997?  Who wants to be a millionaire?

Studying the paths and contrasting the results of AOL and Amazon highlight how much things have changed in such a short period of time.  Remember, it really wasn’t that long ago when high speed internet access and WiFi did not exist.  But twenty years ago, who knew that Amazon would grow to be one of the largest businesses that ever existed, while AOL would basically disappear (except for its email application)?

What will change as a result of our collective experience with Covid-19 and shelter-in-place living?  The future belongs to people who prepare for it today.

Back to my old newspapers:

I did some consulting work in Japan in the winter of 1998.  It was my first visit there, and it seems I saved some mementos.  Among them were a few English-language, Japanese newspapers.  The February 24, 1998 edition of The Japan Times had an article of curious relevance to the coronavirus dominated world we find ourselves in today.  There was a fascinating article about a flu epidemic in Japan.  The headline read:

EXPERTS SHARPLY DISAGREE                                                                                Flu epidemic spurs vaccine debate

Mass vaccination of school children was begun in Japan back in 1962.  From 1976 to 1994, influenza was covered in the Japanese Preventive Vaccination Law, which stated that all children aged 7–15 years had to be vaccinated against the disease. (Japan is the only country to have ever based a policy for controlling influenza on a strategy of vaccinating schoolchildren rather than elderly persons.)  After years of lawsuits and some doctors opposing flu shots, the Japanese government changed its policy in 1994, removing the flu shot from the list of compulsory inoculations.  Just 4 years later, a type-A Hong Kong virus was “raging fiercely through the county.”  It was the worst outbreak in 10 years, with the number of cases among school-aged children topping 1 million. Parents became desperate for flu shots for their children.

“Clinic lobbies have been packed with patients, elementary and junior high schools have been forced to close, and fatalities have been reported.  As of Friday [February 20, 1998], at least 23 children and seven adults nationwide had died of flu complications …”.

The problem was that the vaccine supply had become scarce.  Before the heated debate about the efficacy of the flu vaccine, its makers had produced more than 20 million doses each year.  Production then dropped sharply.  By 1994, only 300,000 doses were produced and 2 of the 7 produced had stopped completely.

“The ministry and vaccine makers are afraid that they won’t be able to supply enough products in the event of the outbreak of a new lethal virus.” 

The debate about vaccinations is a perplexing one.  It brings public health policy up against individual considerations.  The Japanese experience back in 1998 appears to present prima facie evidence for the public health benefit of flu vaccination, and the risk to society of not being prepared for viral outbreaks.  But then as now, some critics of vaccination come forth with conspiracy theories and what science oriented people view as unsubstantiated claims.  History repeats itself.  The last twenty years is ripe with debates and shifting policies regarding preventive medical interventions. I will not wade any deeper into this area, nor will I comment on the pros and cons of various countries’ policies.  I will simply share my belief that anti-vaccination crusaders have done much harm to otherwise modern societies.

The Japanese epidemic in 1998 caused me to think about where we are today.   What do we hear regularly from infectious disease experts?  Societies will need to enforce precautionary measures, like social distancing and use of masks in public places, until we have a vaccine to prevent or limit Covid-19.  Count me among those rooting for the vaccine researchers and manufacturers.

Where we will be in a year?  How about 2 or 3 years?  None of us has a crystal ball that can accurately predict exactly what will happen when.  But we can be certain that things will change.  And when we look back on today’s news through the lens of history, we can be sure things will look different.  A cautionary note: don’t get overly consumed by 24X7 news and commentary.  Much of it will be proven to have been wrong when viewed through the lens of history.

We will be best served by adopting a perspective that seeks to identify and understand the forces of change.  This is always true, but even more so today.  I know what you’re thinking.  As the baseball player-philosopher Yogi Berra is quoted as saying: “It’s tough to make predictions, especially about the future.”  In fact, we can anticipate certain types of change.  We can, if we look closely, see the trajectory of change.  Getting the timing exactly right is the harder part.  (I wonder if Jeff Bezos ever considered how a global pandemic would affect his business?)

Be among those who accept the challenges of the time.  The past is the past, and we can never go back.  But can we learn from history.  And we can and should prepare for the future.  Anticipate.  Afterall, the future is where we will spend the rest of our lives.

TTFN

We have now been in lockdown for over a month.   “How am I doing?” First and foremost, I am grateful that I am healthy, and I am even more grateful that no one in my immediate family or close circle of friends has been afflicted with Covid-19.   But this plague became all too real when I learned that a former business partner had succumbed to the disease.  In a few short weeks, he went from a happy healthy man to the hospital, to being on a respirator in ICU, to passing.  Ugh.   This hit me like a stomach punch.  My colleague was successful in his career, happily married, and a father to young children.  He had no underlying conditions.  How can you make sense of that?   You can’t.  Don’t even try.

Why do bad things happen to good people?   Oh, that question.  There are books that try to answer that question.  (e.g., “When Bad Things Happen to Good People”, by Harold S. Kushner). Religions try to provide answers.  I tried to answer that question when my 18-year old brother died in a fiery car accident in 1985.  I was consumed by this question most recently when I was preparing the eulogy for a dear friend who lost his year-long battle with lymphoma.  Google that question and you could be reading commentary and quotes all day.  These days, I tend be in the Stoic school of thought when it comes to such matters.  While I do very much enjoy a good philosophical debate, and I have experienced my share of bad things happening to good people, I think I will leave that alone today.  Let me just share this quote I picked up from my own Googling.

“Bad things happen to good people all the time. It sucks. It’s not fair but then much of life isn’t fair. It’s how you live that matters. It’s how you deal with the bumps in the road.”  Maya Banks, best-selling author of romance novels.  (No, I have not read any of her work.  But I observed that she has been prolific, pumping out dozens of romance novels since 2006.)

So, how are YOU doing?  How are YOU dealing with this really big bump in the road?  (I know, for many folks all over the world, it’s more like a sinkhole appeared out of nowhere.)  Have you seriously asked yourself these questions?  And then, have you spent some time actually writing down your answers?  If not, I recommend it as a useful exercise.  Here’s why.  Asking yourself good questions can help you with your state-of-mind.   You really can choose how you respond to circumstances not of your own making.  You can decide what you will do and how you want to feel during this time.  You are in control of determining how you want to feel.

As I shared way back when I was writing about my battle with throat cancer, I have been a voracious consumer of the writings and podcasts of inspirational leaders, personal coaches and speakers for many years.  Yes, I am a fan of the self-help genre.  And I love to learn about the life hacks, habits and practices of people who are successful, who live purposefully, and who challenge themselves and others to live life to the fullest.  (It sure beats the negative vibe of the 24/7 news cycle.)

I very much enjoy the podcasts hosted by Tim Ferriss.  Tim is a master at developing and posing questions that, if you think seriously about them, can positively impact your mindset and quality of life.   Recently, during a podcast with guest Ryan Holiday, during a discussion about living in a time of social distancing, shelter-in-place and outright quarantines, proffered this question: “How can you make the next 3-6 months the most enjoyable, most happy or most productive of your life?”  Or, if that is just a step too far for you, how about:  how can this be something you look back upon as a sacred time that you really treasure, not just a time where you survived.

Tim reflected on an interview of Nelson Mandela by world-famous life coach Tony Robbins. Tony asked him: “How did you survive all those years in prison?” Mandela replied: “I wasn’t surviving, I was preparing.”

Ask yourself good questions.  I personally like: “How can I most benefit during the next several months?  What is this an opportunity to do, that I would otherwise not have time to do?”

Are you preparing or are you surviving?  Are you a source of energy and goodwill?  Or are you complaining?  Have you found courage, or are you paralyzed by fear?   Fear and worry are not necessarily bad.  They are part of our internal wiring.  (Our ancestors survived, in part, because they feared there was a saber tooth tiger behind every tree.)  Instead of allowing fear and worry to consume you, let them motivate and inspire you.

I am reminded of the New Testament verse: “Can any one of you by worrying add a single hour to your life?” Matthew 6:27, New International Version

Maybe you do not have an inclination toward big changes or some significant personal achievement.  That is totally OK.  But surely there must be things that you have put off?  Are things that need to be done, but never made it to the top of your list?  I know that I and many of my friends have mundane or time-consuming things that otherwise would not get done.

As I write this, I am cognizant that many people are suffering.  I know that reality.  I know that for some, my words might seem unsympathetic or even harsh.  Please know, and you can be certain, that I am deeply empathic to the trials and tribulations many are facing. My heart goes out to you.  Context matters.  Timing matters.  To those of you battling the disease, either personally or on the front lines, I send you my thoughts and prayers.  I write here now mostly for those who are disenfranchised, disconnected and disgruntled.

Whatever you choose to do with this time, there is one thing I know for sure: complaining is utterly unproductive.  It’s not good for you, it’s not good for others.  It is easy to criticize and blame, but it is more beneficial to focus on personal accountability.  Focus on the things you can do, and the things you can control. You will be happier if you commit to making the best of these unprecedented circumstances.  Seek and attract the positive.  Acknowledge the negative; but strive not to live there.

So, I leave you with this challenge.  How can you make this time enjoyable, happy and productive?   Remember, your answer will be infectious.

TTFN

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

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.

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!

TTFN

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. 

TTFN

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