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.