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

 

 

 

 

 

Overcoming the Shock and Fog of Cancer

A cancer diagnosis causes shock.  And you can feel like your in a fog.  But you can quickly overcome these feelings by being deliberate and proactive. 

Learning that you have cancer is a shock to the system.  It affects you mentally, emotionally, physically and spiritually.  There is a feeling that I describe as being in a fog.  Others have told me of having a similar feeling in the days immediately following their diagnosis.  Here’s the learning: no matter how together you may think you are, no matter how positive of an attitude you can muster, you will experience some amount of shock.  The same is true for loved ones and people who care about you.  Cancer knocks you off your center as you adjust to the new reality.

There is a funny thing that happens.  You definitely feel different than you did before the diagnosis.  How the difference manifests itself varies person to person.  For me, there was a sense of things slowing down.  At times I felt like I was observing rather than participating.  I recall a professor at Wharton talking about “sitting on your own shoulder” as a metaphor for how to be better aware of yourself and others during meetings and, especially, difficult interactions.   The metaphor captures how I often felt during those early days, which for me coincided with my travel Antarctica.

As I described in an earlier post, continuing with the planned trip was a very good thing for me.  The trip provided a great combination of quiet time and busy times full of beautiful scenery, adventure and learning.  I took time to think, reflect and write in my journal, especially during the three days at sea crossing the Drake Passage.   My daughter was not feeling particularly well during our passage.  (Did you know that the Drake Passage has some of the most turbulent seas in the world?  More on that in a later post.)  I was so sorry for her being seasick.  My sea legs and strong constitution did not fail me, and I quite enjoyed the passage.   And I used the time to clear the fog.

A particularly interesting part of my adjustment occurred during mealtimes.  While this was not a typical cruise in most respects, it did provide the opportunity to meet new people and making new acquaintances at breakfast, lunch and dinner.  Of course, with only about 125 guests on this adventure cruise, we had a chance to meet almost everyone on the boat.

Whenever I met new folks, I had this silly, awkward thought.  Should I tell them I have cancer?  Imagine if I said:  “Hi, I’m Lee Dittmar and I have cancer.”  Of course I never said any such thing.  But there is absolutely no denying that you have this new, distinct, but invisible part of who you are. It is a chapter of your life that you are just beginning. It is now part of your story, but it is still so new and your not sure who to share it with or when to share it. I reminded myself that behind every face is a story, and that each and every person on the cruise had experiences and challenges.   I set my intention on being interested rather than being interesting.  I would be deliberate in learning about my fellow travelers, and focusing much less on myself.

During what you can think of as the “shock and fog phase”, your mind will continuously filter your experiences through the still new information about having cancer.  I learned not to fight this and accepted it as part of the process.  It was impossible to not think about the fact that I had just been diagnosed with cancer.  It was too new. But I did fight off the nagging “what if” questions.  I accepted that I had cancer, but I did not accept the inevitability of negative outcome.

I made sure to exercise every day.  I had already made it a habit to exercise several times every week.  And I knew that being fit would help me deal with the side effects of whatever cancer treatments lie ahead for me.  There was a small fitness center on the boat and I was a regular there.  (Most days I was there alone.  A couple of days I overlapped with a couple of very fit guys.  One was a pilot for Southwest Airlines and the other was a pilot for Lufthansa.)  The elliptical faced a wall of glass that allowed me to look out on the vastness of the Southern Ocean, with only an occasional sea bird breaking into the picture.  (Seeing Albatrosses with huge wingspans was an awesome part of crossing the Drake Passage.)

There was a beautiful library on the boat.  It was decorated with hardwood paneling, filled with books with a decidedly adventure and documentary bias, and furnished with comfy chairs.  I made it a point to go there each day (usually first thing in the morning) to meditate, write in my journal and set my personal goals and expectations for the day.  This practice gave me a dedicated time to face any worries, fears and wacky thoughts, to remind myself of all I had to be thankful for, and to set myself up to enjoy the present.  I recommend some combination of mediation and journaling to help get the most out of every day.  I especially encourage making this a habit for anyone dealing with a cancer diagnosis.

In order to overcome the shock and fog of the cancer diagnosis, I was deliberate in focusing my mind on questions, thoughts, ideas and affirmations that were beneficial.  For example, in my “5 Minute Journal, I answered these two questions each morning:  What am I thankful for?  What would make today great?  And then I wrote down affirmations, either from inspirational writings or from my own thoughts.  Later, at the end of the day, I would answer two questions: What great things happened today?  What would made it better?  (I keep my 5 Minute Journals in the “Evernote” app. This allows me to write and read my entries on any of my devices.  There are hardcopy versions of the 5 Minute Journal that you can buy online.)

TTFN.  I leave you here with my 5 Minute Journal entries from 2/18/2017:

What am I grateful for today?  
 
That Krista is feeling better (seasickness)

For my positive attitude and initial response to the cancer news.

For my overall fitness and head-start in physical health as I look forward to starting treatment.

Debra’s efforts to research doctors and plan for my treatment.

Debra, Krista, Connor, Cameron

What would make today great?

Krista able to function and enjoy

Sighting some sea mammals

Maintain inner peace

Exercise

Reading

Affirmations

The universe is conspiring to accomplish my complete healing and recovery.

The changes that are in process are for the greater good.

The power of intention is a major force in the universe, and I use intention as a lever to achieve my goals and objectives.

Every day can be a masterpiece.

I live everyday to the fullest, and look for the good in every experience.

Internalizing the Diagnosis

It was Valentines Day. I had just told my wife that that I had throat cancer. And I was leaving for two weeks for an adventure trip to Antarctica with our daughter. I told myself: “I’ll deal with the cancer when I get back.”   I was very much at peace with continuing with the trip as planned. I did wonder whether I was delaying the start treatment and whether that would make a difference. I chose not to dwell on that question, and took comfort in the doctor’s advice to continue with the trip as planned. But I was very worried about my wife. I feared that the learning of diagnosis would have a devastating effect on her.  And it did.

During the morning of that first day, I was happy to have something all-consuming upon which to focus. We had to complete final preparations, as we would soon be on our way to JFK airport. It was exciting. Krista and I would be setting foot on our seventh continent.   We had both been all over world, but this was a different kind of trip.

I don’t really remember the drive to JFK, but I do recall a feeling like being in a fog. Quiet times led to a thousand questions passing through my mind. Of course, there were no answers for the questions; at least not yet. Answers would only come over time.

The biggest worry initially was “is the cancer widespread? Has it metastasized?” I did not speak of this worry. Instead, I told myself that I was going to need to let this play out. There was no benefit in worrying or continuing to ask “what-if” questions.   I realized that this cancer journey was going to take mental discipline and emotional control. I resolved to prepare myself. I was determined to develop routines and habits that would help me deal with whatever was thrown my way.

I was very fortunate in that cancer struck me at time when I had developed habits and routines that would serve me well. A notably positive thing about the timing is that I was quite healthy and fit at the time of the diagnosis. I had lost 25 pounds over the past 18 months. I was exercising regularly and focusing on my diet. At the time, I was well into eating the Ketogenic diet, which was working quite well for me. Coincidentally, the low carbohydrate high-fat Ketogenic diet is one that research has shown to be beneficial in the battle against cancer.

Five months before the diagnosis, I had taken up the practice of meditating. After a slow start, I had been practicing daily meditation for several months. The other routine I had established was daily journaling. I was doing two types of journaling: 1) a daily “5 minute” journal (which I did in Evernote);  2) a longer hand-written journal, which I did tried to daily but settled for 4-5 times per week.  These routines would help me internalize the diagnosis, process my thoughts and emotions, and decide how I would think and act during the battle.

Tim Ferriss (author, podcaster, and evangelist of leading life hacks) speaks of his journaling as “taming his monkey brain.” In other words, clearing the clutter and getting focused. It certainly worked well for me, especially as I prepared to battle cancer. The following is directly from my handwritten journal, grammatical errors and all, written on February 15, 2017 at 8:50 AM, on Aero Argentina flight 1857 from Buenos Aires to Ushuaia. This is how I internalized the diagnosis.

So, the day came to get the test results. And guess what? A new game in town. We are now in the “C” game. Not what I wanted, but honestly, I was not surprised. It has been less than 24 hours since I got the report from Dr, Gallagher. Awkward timing. But what timing would be god for this. My first thought was “How would Deb deal with this?” I was thinking about how I would tell her before the doctor was done explaining.

Gotta play the hand your dealt. And this is one I’ve got to play very well. No room for screwing around. Must become an expert. This is now part of who I am. Part of my reality.

Key Principles:

1) Positive attitude

2) No whining – no blaming – no looking for cause

3) One step at a time (live in the moment)

4) Team effort (cannot do it myself)

5) Health & fitness first priority

6) Must get good rest everyday

7) Complementary protocols

8) Document the journey

9) Knowledge is power (follow the data)

10) We win – no matter what

Live your life. The disease is only one factor. It does not own me.

How do I reconcile my goal to ski at 100 with the near term challenge of surviving the next 5 years? Of course, this is just part of the journey. This is a necessary chapter in the book. My experience conquering cancer will prepare for the rest of the journey. And it will help me to value and enjoy every day. I also think it will help me and Deb. It will bring us closer together. It will make the other stuff far less important, some of it totally unimportant.

I must be sure affairs are in order. The financial plan will likely change. Unlikely to be able to get life insurance at reasonable price. So other strategies come into consideration.

So enough about “C”. Krista and I are on our way to an adventure of a life time. In just a few hours, we will be in Ushuaia. In 30 hours, we will be boarding the Silver Explorer on our way to Antarctica. Hard to believe! But if you can dream it, we can make it happen.

Until I started to work on this blog post, I had not re-read that journal entry since the trip to Antarctica. I now know that my thoughts that day, set forth sloppily in my journal (my handwriting is so bad, I need to print so I can read my own notes), laid the foundation for how I would think and act in my battle with cancer. The principles I listed actually guided me on my cancer journey, and allowed me to really enjoy the journey to Antarctica.

The Day of Diagnosis

The opportunity for a meltdown occurs when you first hear the diagnosis. Cancer is like that.  The moment you get that diagnosis is etched in your memory.  It’s similar to how people know exactly where they were and what they were doing on 9/11.  The news can be disorienting, and over the first few days your emotions can swing wildly.  When I reflect back on my own experience, I now know that how you internalize the diagnosis is very important for yourself and for the people who care about you. Take it slowly. It is important to go with the flow during that time.  Don’t alter your near term plans. It’s not a time to make big decisions or big changes.   Here’s how it happened for me.

For a couple of months (my wife would say for even longer), I had been experiencing periodic hoarseness; no other symptoms, just hoarseness.  I remember researching the causes of hoarseness, and way down this list was the “C” word.  I took note, but I was not particularly concerned. By early January, the hoarseness had gone from episodic to persistent.  So, I was off to see my primary care physician, who then referred me to an ear, nose & throat specialist

When the ENT doctor examined me, his camera quickly revealed the likely cause of the problem.  I had a polyp on my vocal chord.  The doctor explained that he would surgically remove the polyp, and he said that more than likely this would resolve the problem.  He explained that the polyp would be tested to determine whether it was benign or malignant.  The surgery was scheduled, and I hoped for and expected a successful outcome.

The surgery (known as a Laryngoscopy) was conducted on February 1, 2017.  All seemed to go well.  I had expected my voice to return to normal after a week of rest and healing.  But this was not to be the case.  Something was still not right. My voice was not recovering.

My post-surgical follow-up visit was delayed by a snowstorm.  Because of my schedule and the limitations of the doctor’s office hours, my appointment was ultimately pushed out to Valentine’s Day.  Coincidentally, this was the same day that I was scheduled to depart for Antarctica. It was special trip with and for my daughter, Krista, arranged over a year ago to celebrate her receiving her MBA from the University of Texas.

Mine was the first appointment of the day. I arrived early, as in less than an hour, I would be on my way to JFK airport to fly to Argentina. After parking my car, I sat for a few minutes and reflected on the likely outcome of my meeting with the doctor. What would I learn in just a few short minutes? Should I expect to learn that the polyp was malignant? While I hoped for good news, my instincts told me that I should prepare for the worst.   I remember asking myself “what’s your prediction?” As I opened the car door, my mind told me to get ready for the ‘C” word. While a part of me still hoped I would not receive a cancer diagnosis, the fact is that, at that moment, the mental and emotional battle had begun. I had already started thinking about how I would deal with it.

Before I knew it, I was in the examination room and, much to my surprise, the doctor showed up promptly. It had been almost two weeks since the surgery to remove the polyp. The doctor had received the biopsy results well over a week ago. We talked about how the winter storm had played havoc with our schedules. He told me that he was going to call me earlier, but when he saw I was on his schedule he decided to wait. He could hear that my voice was weak and raspy. He wasted no time in explaining that my voice had not recovered because of the cancer. The biopsy had shown the polyp to be malignant. Boom!  There it was.  The dreaded diagnosis.  Time seemed to stand still. Even though I thought I had prepared myself, the truth is that I felt like I was in shock.  My rationale self started to ask questions. How far along was the cancer? Was it treatable? What would treatment entail? What were the next steps?  But I am not sure I was fully hearing the doctor’s answers.

The doctor was calm, and I tried to be as well. He spoke positively about the prognosis. I thought he said something like “it seems we caught it early” evidenced by the fact that my only symptom was the hoarseness. He also said something about the biopsy results suggesting that the cancer could have had its origins with a virus.  But he did not say whether that was a good or bad thing.  Then he explained that the typical treatment would entail 6-8 weeks of radiation and, potentially, chemotherapy.  It was too soon to say with any certainty.  Special testing would be necessary to determine exactly how wide spread the cancer was. The biopsy of the removed polyp only confirmed that there was cancer in my throat. But how far had it spread? Getting a pet scan would be the next first step.

I had told the doctor previously about my planned trip to Antarctica. Now, in light of the diagnosis, I asked him if I should still go. He did not hesitate or hedge in answering. “Absolutely” was his advice. He said it could take at least a week or more for a pet scan to be arranged. He also said that it would take some time to research oncologists and get an initial appointment scheduled. “Of course, go to Antarctica” he said.  “I would.”

Before I left his office, I had an appointment scheduled to get a pet scan. It would happen the day after I returned from Antarctica.

It seemed like hours since I had arrived at the doctor’s office, though it was probably only about 15 minutes. And ever since the doctor had told me that the biopsy revealed the cancer, all I could think about was “how would I break the news to my wife?” The ride home from the doctor’s office took about 20 minutes. The entire way I thought about what I would say and how I would I to say it. I hated that I had to put my wife through this. Ugh. Would it make sense to wait until I returned from Antarctica? It took only a second to dismiss that idea.   The only thing that made sense was to share exactly what I had learned, without embellishment, interpretation or extrapolation. The news was not positive, and there was no sugarcoating the fact that the biopsy revealed the presence of cancer in my throat. But that was all we knew at this point.

When I got home, my wife, Debra, was working in the office on the top floor of our home. My daughter was finishing packing for our trip. The car service would be picking us up in about am hour. I asked Krista to come up to the office because I wanted to share the results of my doctor’s appointment with her and Mom at the same time. And that is what I did. My recollection is that I was calm and matter-of-factly in giving the report. Before the question could be asked, I related the doctor’s strong encouragement for me to continue with the trip to Antarctica as planned.

There is no doubt that Debra was very worried. She told me that she had expected the news to be bad. “I knew it” she said. She did not argue that we should cancel or reschedule the trip. But she expressed her concern about any delay in starting treatment.   I tried to reassure her, based on the doctor’s information, that it would take significant time to get the start of treatment whether or not I went on the trip. I knew she was not fully accepting of this explanation at the time. But nonetheless, she was outwardly supportive of the decision to continue with our longstanding plans.   As I will explain further in a subsequent blog post, this was a great decision me, initially a very difficult one for my wife, and one that bore out the doctor’s predictions about how long it would take before any treatment would begin.

My lesson from the day of diagnosis is that it is important to continue living.   This does not mean to ignore good medical advice or common sense. The diagnosis of cancer must be taken seriously, of course. But if the context of the diagnosis is otherwise good health, continue to live each day to the fullest. In my case, I did not feel sick and I was not experiencing any pain or functional limitations. Remember, my only symptom was hoarseness. My doctor had been very clear that there was no treatment benefit to be had from changing my plans.

Now I know that having plans to travel to Antarctica at the time of a cancer diagnosis is not a particularly common situation. But the lesson is applicable even if your plans at the time involved more routine activities. Don’t stop beING you are or doing what you do. Yes, it is easy to start thinking the worst. It is easy to begin asking yourself “what if” questions. But for yourself as well as for your family and close friends, don’t panic and don’t stop living. Be pragmatic. Give yourself time to internalize the diagnosis, which is a process. I’ll discuss my process and what worked for me in the next blog.