Communicating and Documenting Your Journey

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

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

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

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

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

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

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

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

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

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

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

TTFN

 

 

Fear Management

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

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

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

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

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

What things will I not be able to do?

Speak on the phone. No more conference calls.

Sing, hum, etc. No more Karaoke!

Give speeches.

Teach class

Pray out loud

Say “Happy Birthday” with spoken words

“Argue” in immediate response

Say off the cuff things

Cheer at sporting events

Ask questions of speakers, lecturers, and presenters

Wake Cameron with a gentle voice

Say “I love you” to Deb

Have real conversations with Deb

Do “selling”

Continue my work in South Africa

Speak at funerals, weddings, and other special events

Record video or audio for posterity

What are the work-around and compensatory options?

Play guitar/harmonica/piano

Write papers, books, and blogs

Pray silently

Write down prayers, have others say them

Write Happy Birthday (Play a recording of my voice)

Stop all blurting out and mindless comments

Clap

Write down questions

Record “I Love You”

Type or write with Deb

No more international work

Record things now!

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

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

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

TTFN

Where to Receive Cancer Treatment? The Second Consultation: March 2, 2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What was great about today? 

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

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

Debra was awesome

Class was successful 

Safe and timely travels 

What would have made the day even better? 

Not having a sore back and knee

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

Exercise 

TTFN   

 

The First PET Scan: Learning How Far the Cancer Had Spread

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The special support I had from Deb.

The great news that the cancer is local/regional

Meeting Dr. Flannery

All the support from friends

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

TTFN

Facing Uncertainty Early in the Battle Against Cancer

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What am I grateful for?

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

What will make today great?

Completion of scan without stress or issues.

Affirmations

I do everything necessary to beat the cancer

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

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

 

TTFN

 

 

 

 

The Importance of Distractions When Battling Cancer

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

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

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

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

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

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

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

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

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

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

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

TTFN

 

A Sense of Control: Taking Charge of Yourself

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

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

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

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

What are the best supplements?

Acupuncture?

Meditation/yoga?”

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

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

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

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

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

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

 

 

In search of answers: the good and bad of your personal cancer research 

We can conduct research on any topic at any time from almost any place on the planet.   Look at my circumstances. After getting my diagnosis in February 2017, I was on a boat in Antarctica. Even there, I had access to all the world-wide-web had to offer.   This incredible capability can be both good and bad, as I personally experienced, especially during the period between initial diagnosis and the scans, exams and testing necessary to truly understand the extent and nature of your cancer. The challenge is that the amount of data out there is overwhelming, and there is a risk of becoming confused, stressed and – in some cases – more fearful than you need to be.

As I shared in earlier posts, I had been very deliberate in determining how I would approach my cancer journey, and my overall attitude was relatively positive. But, that didn’t limit my curiosity and desire for information. As I stated in one of my principles, I viewed knowledge as power. So many questions filled my head. I wanted to know what I could expect down the road. I wanted to learn about the experiences of others.   I wanted to find out what my treatment options would be. I wanted to know what my chances were for beating this cancer.  And if I beat it, I wanted to understand the likely long-term limitations and consequences, both from the cancer itself and the side effects of treatment.

Seeking answers for these questions is so much different when it concerns your own life than when you are conducting academic or general interest research.   And in this context, the internet is both wonderful and awful at the same time.

Cancer Survival Rates

What would be your top-of-mind question after receiving a cancer diagnosis?   I found that I really wanted to understand the odds of surviving. After “diagnosis” you naturally want to understand your “prognosis”. You want to know whether the cancer will likely be the thing that leads to your death.   And this takes you into the world of statistics and cancer survival rates.

How many people live their lives through the lens of statistics? You’d be right if you answered “not many”. If they did they would probably be making lots of changes. Yet, when disease hits – especially cancer – statistics suddenly take on a high level of importance to almost everyone. This is especially true in the early days when you are processing the new information.

Cancer survival rates tell you the percentage of people who survive a certain type of cancer for a specific amount of time. Five years is the most common period used to calculate survival rate.  Survival rates are portrayed as percentages and are provided for individual categories of cancer. For example, the five-year survival rate for male prostate cancer is 88 percent. That means that of all men diagnosed with prostate cancer, 88 of every 100 are living five years after diagnosis. It also means that 12 out of every 100 are dead within five years of a prostate cancer diagnosis.

You will typically see the word “overall” when viewing cancer survival rates. This is an important modifier. It generally means that the data includes people that have received treatment and those who have not. And it includes various treatment regimes. An overall rate includes people with early stage diagnoses and late stage diagnoses. And so you must look at the survival rate numbers with care. My strong recommendation is that you not place too much emphasis on these statistics. Use them for general information and background. Depending on your diagnosis, the survival rate data might give you comfort and optimism, or they might lead to increased worry, fear or stress. Remember, every person is unique; each person has their own personal cancer journey. There are so many factors that can and do influence the data that go into the survival rate percentages. And there are so many factors that influence the journey of each individual.

If you would like to learn more about cancer survival rates, the Mayo Clinic has a good on-line explanation of what they are and how to use them. Check out:

https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer/art-20044517

I do very much agree with the Mayo Clinic’s suggestion that survival rate data can be useful in evaluating treatment options.

“Statistics can also show how people with your same cancer type and stage respond to treatment. You can use this information, along with your goals for treatment, to weigh the pros and cons of each treatment option.  For instance, if two treatments give you similar chances for remission, but one has more side effects, you might choose the option with fewer side effects.”

Survivors’ Quality of Life

After survivability, the next area of questioning that I focused on had to with quality of life, assuming I beat the cancer. In other words, I wanted to know about the long-term effects of the cancer and the treatment options. What would my life be like on the other side of successful treatment? Would I be able to talk? Would I have pain? Would I be limited in what I would be able eat or drink? Would I be on medication for the rest of my life? Would I always be living in the shadow of cancer, and the potential or even the likelihood of cancer returning?

As I pondered these and similar questions, I thought about the effects not only on my activities but more broadly on me as a person. If I lost my voice permanently, would I still be me? What would it be like to not be able to communicate verbally? (Those who know me well will appreciate the significance for me of this area of questioning.)

So when you start to search on the long-term effects of cancer and of treatment regimes, you will find two large categories of information. First, there is the medical and academic research. Second, there are the personal stories and posts of individuals who are on their own journeys.  Both are useful. Both are sobering.  Both need to be used carefully.

The medical and academic research is typically put forth in a sterile, matter-of-fact manner. Similar to the cancer survival rate data, it is not always easy to understand the interplay of multiple factors. But this category of information is useful in understanding the types of things that can and do happen some of the time. Preparing yourself for what you might encounter along the journey is a good thing to do. It is so much better than being surprised later. I used this information to help to evaluate treatment options. I also used it to determine if there were preventive actions that could be taken along the way to reduce the probability or severity of long-term effects.

The anecdotes, posts and discussions of and among cancer survivors are potentially powerful resources. There are many sites and there are many participants online. When I first found these sites and started to read the posts and discussion, I was initially taken aback as I first observed a decidedly negative picture of long-term consequences and effects.   Ugh, I thought.   But I stepped back and thought about the context. These sites primarily provided an opportunity to share tips, tricks and experiences with others who going through difficult portions of their journeys. They were not the most likely place to read the most positive stories or about survivors who had gotten successfully through treatment and recovery with minimal long-term effects. There might be some very positive and uplifting stories, but they were not a large part of the total. And so it is important to view this body of information as a tool that can be helpful when seeking ways to deal with certain symptoms or conditions. Also, these sites are places to contribute your own experiences, with the primary intention to be of help to others.

As I reflected on the above, I realized that it was not surprising.   On the cancer survivor sites it is ok and desirable to talk about the challenges and what could be done about them. Interestingly, this is opposite of most social media, where participants are more likely to focus almost exclusively on the positive things in their lives.

Final Thought

Researching your cancer and learning what to expect is important and necessary. It is useful to understand the experiences of others and to obtain data that can help evaluate treatment options. And it is valuable in identifying and selecting steps that can be taken to mitigate side effects of treatments and prevent or reduce long-term effects. But take care to not drown in the data, and avoid becoming addicted to continuously searching for more. Remember, effectively navigating this very different journey is mostly about you and how you approach it mentally, emotionally, physically and spiritually.

TTFN

Navigating the World of Cancer Treatment: First Steps

Until you or a loved-one are diagnosed with cancer, you probably don’t think much about cancer treatment options. I know I didn’t. But when it happens, and once the shock of the diagnosis subsides, researching treatment options becomes your top priority.   In this post, I will explain how we got started on the path toward my eventual treatment regime, and share some of the lessons we learned along the way.

Let’s begin with what we knew at the time. The only fact we had was that the biopsy of the polyp removed from my vocal chord was malignant. That’s all we knew for sure. We had no idea how much cancer was in my body. We did not know exactly where the cancer was located, or whether it was limited or had already spread. And we would not know the answer to these questions until after a PET scan.  My ENT doctor arranged for me to have a PET scan at our local hospital,  It was scheduled for the day after I returned from my trip.

Now, let’s remember what was happening at the time (February 2017). I was on an adventure cruise with my daughter Krista, approaching the Antarctic Peninsula after crossing the often-treacherous Drake Passage. Debra was at home recovering from her Ground Hog Day experience as she came to grips with my diagnosis. Because we live in an age of incredible technology, Debra and I were able to stay in touch through text, email and FaceTime calls. We agreed that Debra would take the lead in researching potential treatment centers and specific Oncologists. Debra wanted me to be as free as possible to enjoy the adventure, which I greatly appreciated.

Debra started her efforts by first talking with a small group of good friends and asking for their input and advice. Some were in the medical profession, some had been through cancer themselves, and all were friends whose opinions and judgment we both trusted. Debra did not try to do this alone; she knew it would take a team. Our team was enormously helpful. To a person, they were ready, willing and prepared to help. Rather than just relying on their individual experience and knowledge, they leveraged their own networks to gather even more insights. It wasn’t long before a picture began to emerge regarding the options.

We recognized that we needed to make the following decisions:

  1. Should we continue with the plan to have the PET scan at our local medical center?
  2. Which Cancer Center should we select for treatment?
  3. Which Oncologists should we select to be on the team?

The consensus among our informal advisors was that there was no reason to not have the PET scan locally. Regardless of where we might go for further evaluation and ultimately treatment, the results of the scan would be readily available to the medical professionals.   So we confirmed that decision fairly quickly.

The decisions regarding which Cancer Center and which specific Oncologists were less straightforward. We quickly saw the interconnectedness of these two decisions.   We also learned how getting appointments with specific doctors would take perseverance as well as good networking.

Because we live close to a major metropolitan area, we have a number of reputable Cancer Centers within driving distance. We decided early on that we would limit our search to facilities with 50 miles or so. We would not need to consider options that would require long distance travel, overnight stays or relocation. We were lucky in this regard, because not everyone has this good fortune when faced with the need for cancer treatment.

There is a lot of information available about Cancer Centers. In fact, it is a bit overwhelming.  It takes time to search the web, find the relevant data and review it.  Debra found the personal experiences of friends to be important during this process.  The specific nature of your cancer should be considered when choosing your center and doctors. For me, that meant we wanted a team with extensive experience and a proven track record of successfully treating cancers of the head and neck. This consideration along with significant input from our network led us to focus our research on the Abramson Cancer Center at Penn Medicine (University of Pennsylvania) in Philadelphia.

We knew from my ENT doctor that treatment might include daily radiation treatments over a 5-8 week period. This factor caused us to continue to consider our local medical center as a viable option. But we knew that easier travel would not be a sufficient criterion; the local option would also have to offer comparable quality of care in order to be selected.

While I was viewing whales, seals and penguins, and making multiple landings on the Antarctic Peninsula, Debra was making numerous phone calls on my behalf. Based on her hard work and information gathering, we decided that we would seek appointments with Oncologists at both our local hospital and at Penn Medicine.   We agreed that we would seek appointments at other facilities ONLY if we were uncomfortable with both of these options.

We had received a recommendation for a local Radiation Oncologist. Debra was able to secure an appointment with him on the same day as my PET scan.  Arranging the appointments at Penn Medicine took a bit more effort. We learned that this large treatment center has a standard process for bringing on new patients. When you make the initial call as a new cancer patient, you are assigned a Nurse Navigator, who turned out to be a very important and helpful person. Navigating the complexities of such a large health care provider requires someone who knows their way around and how to get things arranged.

We had received a recommendation regarding specific Oncologists at Penn we to seek out. The recommendation came from a highly qualified and well-informed individual in the health care world; a good friend of a good friend.  We wanted to secure appointments with these highly recommended doctors. “Well, that’s not how it normally works,” Debra was told by the Nurse Navigator. Hmmm. “We’ll have your husband evaluated and then we’ll determine the appropriate team of doctors.” No, that’s not how we wanted it to be. Persistence mattered. And so did leveraging our network. A well-placed phone call from the source of the recommendation, and suddenly it was possible to secure appointments with the Medical and Radiation Oncologists we wanted to meet. Leveraging our network was very important in our experience.

So that’s how we began the medical part of the journey.  The initial appointments were set.  I had what I needed to get started. No decisions had been made with regard to the nature or location of the treatment, or even who would be on my medical team. We would take it one step at a time. Thank you Debra.

I was able to enjoy my adventure in Antarctica, which I’ll share more about in future posts, knowing that everything was arranged for when I returned home. But it would be a long road with much more research, information gathering and deliberation before final decisions were made and any treatment would begin. We’ll pick up on this thread in the next post.

TTFN

 

 

 

 

 

 

 

When a Loved One is Diagnosed with Cancer: Debra’s Perspective

What is it like when you first learn that your spouse has cancer? 

A couple of posts back, I explained how I told my wife about the just-received diagnosis and proceeded to depart for a 2-week trip to Antarctica. I hated that I had to deliver bad news and then leave. While the trip was a good thing for me, I knew that Debra would be very sad and very worried, and would struggle as she processed the new information.

I remember trying to put an upbeat spin on what the doctor had told me.   He had used words like “caught it early” and “proven treatment” for this type of cancer. I told Debra that treatment would take a couple of months. As she would have expected, I expressed optimism and confidence about dealing with this. Did I say something silly like “no need to worry”? I sure hope not. Here is what Debra remembers about that day and the first few days after the diagnosis.

“When Lee left the house early that morning to go to the ENT doctor, I did not have a good feeling about what he would learn. I just knew it was going to be bad news. And I had already started to worry. And ‘what if’ questions filled my head. I tried to focus on the trip and being helpful to Krista with her packing.   I had earlier decided to prepare and hide a bunch of special cards in Lee’s bag so he would have a new card from me for nearly every day he would be away. I busied myself with this task while Lee was at the doctor’s office. This was something I used to do regularly when Lee first started traveling for business; but not so much in recent years. In February 2017, I really wanted Lee to know how much I appreciated, cared for, and loved him. It was particularly important then, because we had been going through a rough patch. 

Lee and I have hearts that have been tightly entwined through forty years of experiences together. From the beginning of our relationship, falling in love, getting married, having babies, parenting, just going thru the motions of life, sometimes just surviving, through sickness, injuries and bad ‘whammies’, like miscarriages, deaths of family members, deaths of friends. All of the above are strings and knots that can bring people closer together, as they had for me and Lee.”

All the way home from the doctor’s office, I thought about Debra and how best to tell what I had just learned. I wanted to be factual about the diagnosis, and deliver the message with optimism about the prognosis.   I decided I would talk to Debra and Krista at the same time. Back to Debra’s perspective:

“I was doing stuff at my desk in our home office when Lee returned. He came up to the office with Krista following him.  I remember listening to him speak and say ‘the polyp was malignant.’  What?  Malignant? Cancer? After that, I am not sure I really heard anything else, even though I know Lee was still talking. I remember saying ‘I knew it. I just knew it. I had this feeling when I woke up.’   I had an instant headache and felt like I could throw up. OMG! I was scared! 

What did all this mean? I knew people who had cancer, some survived, some did not. You just told me that you have cancer, and you are leaving in 45 minutes? I was sobbing inside. I couldn’t think straight. I was so scared. And you’re leaving!?!?

I think I held it together while Lee and Krista prepared to leave. I knew there was no way I could change Lee’s mind about going on the trip. But I felt that he should stay home so he could start treatment right away. I knew that was not going to happen. Lee explained that treatment could not start right away no matter what.   But I wanted to do something, and I wanted to do it immediately.

‘What? The car service is here?’ l was scared and he was leaving. After Lee & Krista left for the airport, I cried a lot. I was so scared. I was worried. I was angry. I felt like my world had been turned upside down. I wanted to scream. I had held it together as best so I could to send Lee & Krista off on the trip that had been planned for such a long time. I thought about Lee’s optimism and it helped me a little. But my mind took me down the worst-case path.  It didn’t take long before I was worrying about how I would survive alone if the cancer took Lee.

As usual whenever Lee or Krista traveled internationally, and they had each traveled all over the world, I worried.   They were taking a trip that I simply had no interest in going on. Just the idea of being on a boat crossing very rough seas made me feel seasick. I would settle for seeing the pictures. But they each had set a goal to visit all 7 continents. And Antarctica would be the seventh for them both.   Funny, the ‘travel worry’ was not so bad this time, in spite of the exotic destination. That’s because I now was not only worried – I was scared to death about Lee having throat cancer.

I had a very difficult time falling asleep that first night. I literally fell into our bed. I needed sleep. Instead, many tears flowed. My stresses and anxieties were chasing each other frantically around the room. ‘What’s going to happen? How will we know what doctor to use, which radiologist, which oncologist? Where do I start? Who do I call?’ Finally, sleep came to me.

I woke up at 6:05 AM on Wednesday (February 15, 2017). I got a cup of coffee, fed the dog, and went upstairs to wake up our son, Cameron. He was happy to being going to his ACHIEVE program. We went though our morning rituals. The bus came and Cameron was off to ACHIEVE. I sat down at the kitchen table and write down a list of things to take care of: errands, groceries, check phone messages. Then tears came again. I gulped down my coffee, and then cried some more.

I decided to go back to bed. I couldn’t function. I got up at 2:15 PM and showered. At 2:30, I welcomed Cameron home. He took our dog, Comet, for a walk. Then he worked on his art.   He loves to draw.  A little later, I began to prepare on dinner and Cameron set the table. We ate and then cleaned up. Cameron showered and got his stuff ready for school. Bedtime was at 9:30, for Cameron and for me.

But my mind was racing. “Cancer in his throat? What does all this mean?’ I was sobbing uncontrollably. I still couldn’t think straight. ‘I’m so scared and you are not here”, I thought.  ‘I knew people who had cancer, some survived, some did not. I know other people who have cancer now. How could you have cancer? I’m so scared and you left me.’  I fell into bed.  I needed sleep. Instead, it was just more tears and more OMG questions.  ‘What’s going to happen?  How will we know what doctor, what radiologist, what oncologist? Where do I start? Who do I call?’ Sleep finally came.

I woke up at 6:05 AM on Thursday (February 16, 2017), got a cup of coffee, fed the dog, and went upstairs to wake up Cameron. Once again, Cameron was happy to being going to ACHIEVE. The bus came and Cameron was off. I sit down at the kitchen table and, once again, I made a list of things to do: errands, groceries to pick up, check phone messages. Then tears came. I gulped down my coffee and cried again.”

Debra described the first few days as like being in that old “Groundhog Day” movie. She told me she would wake up in the morning and for the first few minutes she would feel fine. Then she would remember the cancer.  Whack!  It would hit her like a rock.   But she had to keep emotions in check for a while, because she had to be there for Cameron and help him get ready to go to his special needs Achieve program.   As soon as Cameron was out the door, she told me that she would begin to cry. Fortunately, she did not have to cry alone. Our good friend Yvette, who lives with us, would cry with her.

“I was stuck in my own personal Groundhog Day. I was stunned and unable to function. I could only do the things that were absolutely necessary, which to me seemed to keep Cameron’s day stuck like Bill Murray’s in that silly Groundhog Day movie. I felt it was very important to ease Cameron into this new life with Dad’s cancer diagnosis.

I am not sure when it happened, but at some point I realized that I couldn’t just keep crying. I needed to do something. It was time for me to do what I usually do when a crisis hits. I needed to get busy doing what I could to make things better. Before falling asleep on Friday night, I made a list of all my questions. I had a lot of research to do. And I listed the calls I needed to make to set up appointments for Lee. Then I wrote down the names of people I needed to call. I had been radio silent with my friends during those first 4 days. I knew they would be there for me. But I felt like I had to process all this before I could speak to them.

It was time for me to start researching oncologists and cancer treatment centers. I had a mission and it kept me busy. And that was what I really needed.”

Debra experienced shock as bad or worse than I had. We would say that it was unavoidable. Only the duration was uncertain. When a loved one receives a serious cancer diagnosis, this is typical. Even the most stoic among us will experience some degree of shock. Our lesson learned: you just have to let it run its course. It’s a bit like grieving. Debra now tells people:

“Give yourself time and the freedom to process the information. And try to focus on the present and not spend too much time thinking or worrying about the future. It is important to begin to do things that help you get back to functioning. Write down what you need to do each day. Do things that move your mind away from just worrying and imagining the worse.”  

If and when you are faced with the challenge of having a loved one diagnosed with cancer or any other serious ailment, it is essential that you take care of yourself.   The lesson is similar to the pre-flight safety briefing we all hear when we fly commercially: “put on your own oxygen mask before helping others.” You must do what it takes to maintain your physical, mental, emotional and spiritual health. Then you can be supportive and helpful to your loved one. Debra says now that she did not do as good of a job taking care of yourself as she now knows she should have.  But she found what worked for her at the time. Debra’s advice today:

“It may only take little things. On the physical side, be sure to move your body. Exercise if you can. At least take walks. Mentally, occupy your brain with a challenge. Perhaps you enjoy crossword puzzles, Sudoku or other games. Just do something that exercises your mind. Emotionally, connect with friends. Allow them to remind you that you are not alone. And don’t be afraid to ask for help.

Live in the present moment as much as you can.  I know this is easier to say than to do.  But try.  Allow your inner spirit and will to keep you going. Be deliberate in being aware of what is happening around you. And take time to pray or to reflect in whatever way you are spiritually.  Develop a deeper focus on what truly matters. While I did not do it at the time, I know that journaling can help you with this and with mental, emotional and spiritual wellbeing generally. ” 

I am thankful for having a strong woman as my wife. My battle with cancer put her through a lot. I feel like it may have been emotionally and mentally harder on Debra than on me. It hurt me to know that this was likely the case. But it was also a source of strength and energy to battle the cancer, and a powerful reason why I had to win the battle.

One final thought. Thinking the worst and worrying are common reactions. But don’t let negative thoughts consume you. A useful insight comes from Seneca, one of the most famous Roman Stoic philosophers: “We suffer more often in imagination than in reality.” 

TTFN