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