More Questions than Answers

The last few weeks have found me primarily home-bound.

I was discharged from Maine Med at the end of April into home hospice care, and all the implications that holds.  Most often this means getting pain relief and pain management at home, to maximize my comfort levels while I deal with the symptoms of my stage 4 metastatic melanoma.

Like most else along this cancer journey for me, it’s not been a straight line.  Marcia is a quick learner, and rapidly figured out the balance among the various pain management drugs, and other associated drug remedies dealing with symptoms of my side effects.  I think hospice care has only been here at our home a couple of times.

Three weeks in the hospital out of four in April definitely weakened me, and I have needed a fair amount of rest and recuperation, mostly moving from my reclining leather chair to a couch to my bed.  I have needed oxygen supplements, and have had little appetite.  My lower and upper body strength is pretty weak, and I definitely need my naps.

And yet.  It seems (to Marcia and I) that my physical condition has stabilized and perhaps become slightly better.   We haven’t seen our MGH oncologist in a few weeks, but will do so the first of June and get an update from his perspective.  So we are starting to scratch our head – what does hospice care actually mean?

When we first were discharged home, we thought it meant to prepare for end of life, and we busily made a number of the practical arrangements.   We have made a lot of decisions around funeral details, including cremation vs interment, a planned autopsy of my body for research on this cancer and its treatment, the actual cemetery plot and monument design, the design of the service, hymns, location and logistics, etc.  I have had the opportunity for deep, intimate, and heartfelt conversations with loved ones, and connections with lots more folks that have made a large impact in my life.  And I was able to largely finish up the family, management, and Board succession issues that remained open.  (We are still keeping visits to a minimum, by the way, to sustain and preserve my energy).  i am feeling “ready” should my it be my time.

So now I remain in a strange kind of “limbo-land”.   I am frustrated by being so restricted to home and physically limited.  I am sleeping a good deal of the day.  And I seem to have more questions than answers.

There is no doubt my body is full of cancer.  But for the moment it doesn’t seem to be getting worse, and my body is slowly regaining strength.  I believe my life is (probably) near its end, but I have no way to really determine that.  I have done all the planning I choose to do.  So what’s next?  Am I “waiting” for something? Just allowing life to roll wherever it is headed, on its own timetable?  Testing my patience, and my frustration levels?  REALLY testing the “one day a time” and “moment to moment awareness“ mantras?  Putting all my mindfulness work into real practice when it really counts?  Is this the ultimate opportunity to see the sacred moments in everyday life? These are the questions of the day, and perhaps the greatest challenges yet…

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My Spiritual Journey and Facing Mortality

Let me start at the end. I have reached the point where I don’t fear death.  I actually don’t believe there is permanent death for any of us, and this belief is very liberating!  I can release lots of fears after letting go of the fear of death, and live my life with much more peace.

I have come to believe that our true eternal self goes by various names, from various traditions, which largely mean the same thing:  Divine Light and Spark, Radical Grace, the God Within, the Holy Spirit, the Eternal Soul, Conscious Awareness, Pure Energy, Infinite Compassion, our Buddha Nature.  This is an eternal presence or awareness that passes all human understanding.  I believe we each merge into an “all-connected” state after we complete our human lives that is filled with unconditional love, more powerful than we can dream of.  We are spiritual beings having a human experience, not the other way around.

I will articulate more of my spiritual beliefs, but let me first outline my journey to this point.

I grew up attending South Congregational Church in Kennebunkport, a typical Protestant, fairly liberal, United Church of Christ institution.  I was baptized and confirmed there, and attended Sunday School and Youth Groups.  My childhood best friend was our minister’s son, and, my Mom worked as the Church Secretary for 15 years.  I was involved!

The core message about God that I grew up with was that He was not a judgmental or stern God;  rather He loved all unconditionally and compassionately, and celebrated our joys and wept with our losses.  God was there for great comfort, and Church was a sanctuary in this way.  Our Church community or congregation was very important in terms of care and support and friendship.

I didn’t really know how to interpret the many miracles that are in the Christian narrative: the Virgin Birth, the healing miracles, the Resurrection, etc.  Were they real, or symbolic?  I didn’t take Christ “into my heart” at any rate.  I guess my best reconciliation was that God incarnated as Jesus Christ, bringing the divine to the human experience, and He died, to prove we are all blessed, forgiven, and loved unconditionally.  I believe in this creed, and for that I am indeed grateful!

My later teenage years and early 20’s I drifted away from my Church, as is common.  I did experience a remarkable professor at Colby College named Gus Todrank, who I first had in a survey of world religions, and realized how remarkably similar their roots and precepts are.  I later took more advanced courses with Prof. Todrank, and he opened my eyes to unconventional thinking about our religious institutions and practices, and he really started me on a personal spiritual journey, that’s now been going on my whole life.

Marcia is an (American Baptist) minister’s daughter, and when we got married (in So Congo Church) and settled in Kennebunk, it was natural to get involved.  We attended regularly, had our three children baptized and confirmed there and attend Sunday School, and I served on and chaired various committees as our kids grew up.  We enjoyed the Church community very much, and became personal friends with the current minister.  I even delivered a sermon one Sunday, when a guest minister had to leave for an emergency halfway through the service, and handed me (the Deacon in Charge for the day) her typed sermon.  It came off not half-bad!

Attending our Congregational Church was and is a meaningful experience for me.  It’s a moment in the week to stop, reflect on blessings in my life, enjoy the often-powerful music, take home things to think about from Charlie’s sermons, and enjoy the authentic well-wishes, caring outreach,  and goodwill of other members.

But I have been on a spiritual quest for some time, and traditional Protestant religion hasn’t answered many of my questions.   The Scriptures seem limited and not often relevant to me, and certainly the divisiveness often created by dogmatic differences among religions has been appalling and shaped our history in a tragic way at times.  I sensed and believed there was more at a personal level, that lead to ultimate peace and joy,

So in my 40’s and 50’s I began a more personal quest.  Marcia and I began a “book club” with three other couples that was loosely spiritually based – we read the Conversations with God series, for instance, and books by Mitch Albom, and Frankl’s Man’s Search for Meaning.  I became interested in Marianne Williamson’s theories of miracles in our lives every day, Elizabeth Kubler Ross’s finding God in our last days, and Eckhart Tolle’s The Power of Now.  I started to read Deepak Chopra, and I even co-led a CEO group I am involved in around Chopra’s Seven Spiritual Laws to Success.  I became intrigued by Buddhist philosophy.

I’ve continued to be an avid reader of spiritual growth books.  My time is in the early morning, before anyone else is stirring, and I have eagerly received the wisdom of many authors.  Since my cancer diagnosis in May 2014, my mortality has certainly become more real to me and I want to play out my remaining life in the best way possible, and I have also been exploring what might come next!   Important books during this phase of my life have included Anita Moorjani’s Dying to be Me, see more below), Richard Rohr’s The Naked Now, Jack Kornfield’s The Wise Heart, and Wayne Dyer’s I Can See Clearly Now. They have helped inform and shape my spiritual beliefs, which I will articulate further in a bit.

But active spirituality is not just reading and reflecting;  it has to be experiential.  One striking example was an experience Marcia had, just after her Dad had passed away. We were in London, and attending Sunday morning worship service at the historic St Paul’s Cathedral.  Marcia at one point early in the service said to me “push over”, and she created a space for what I thought was an empty seat.  Later in the day, she confided that her father had paid us a visit, and wanted a seat!

In my younger years, I would have been a “doubting Thomas”, believing in only things that are rational and scientifically provable.  But I have come to believe that there are miracles, spirits, incarnations, etc. that are just too coincidental and purposeful not to take seriously.

Here’s an excerpt from one of my early Blog posts, recalling a story around my own Dad’s death, and how it impacted me 13 years later:

Growing up cruising the Maine coast, we always saw lots of seals in their natural habitat, swimming, sunning, playing. My Dad seemed to love seals. I will always remember one magical night with him on Seabiscuit, when we were in a place ironically called Seal Cove, on the Damariscotta River, and a large population of seals croaked and sang most of the night. Dad talked about that one for a long time.

Our family had a special seal sighting right after my Dad passed away, in 2001. He died in Florida, and I remember the day when I returned to Kennebunk with my Mom, and we drove down into her driveway on River Locks Road (riverfront location). Some family came out and said there was a seal hanging out off the docks! Now, a seal hadn’t ever been seen by any of us in almost 30 years of living there. This is 2 ½ miles upriver! But that seal hung out for the rest of the day, and my entire family were all sure that somehow it was Dad, telling us everything was okay.

So fast forward 13 years to the Sunday morning in June, a few days after “The Diagnosis”. I wasn’t sleeping much, so got up early and walked Parsons and Crescent Surf Beaches, my favorite morning place of all time. Crescent Surf is very quiet and private, and as I was walking along I was thinking that I am really going to need a lot of strength, both emotionally and spiritually, to deal with this, and I wasn’t at all sure where that strength was going to come from. All of a sudden, there was a seal just outside the surf, staring at me, 50 yards away. He stared at me for a while, dunked, and then came up again and stared some more before taking off.

Duh! I actually laughed. Dad! Of course, THAT’S where I am going to find strength from. His incredible example in life, and in dying, of strength, perseverance, and courage.  Okay, I felt better. Thanks Dad!

Do you believe in ghost and spirits?  I have refused to discount the possibilities of after-life spirits, and in fact Marcia and I believe our first house was frequented by a spirit or ghost –  there were just too many unexplainable events, as there are many documented cases where paranormal activity seems too real to be discarded.

A few years ago my spiritual path signaled a detour, an exploration into a more traditional religion, that of Quakers.  My ancestors who came to this country in the mid-17th century were devout Quakers, and it was an important part of my family’s life for generations.  It eventually gave way by time of my grandfather in the early 1900’s, but I had always had a desire to learn more.
Well, it turns out that Timothy, whom I am named after, was head of the New England Quaker Mission in the 1880’s and 1890’s, and when he retired from Hussey Manufacturing, he and his wife took up establishing a permanent school in Ramallah for young Palestinian women – and eventually a boys’ school as well.  In 2011, I made a connection that these schools still existed and were thriving.  So I spent 3 days in Ramallah, Palestine, and got to live in my great-great grandfather’s shoes for a bit.  I went to the Dover (NH) Meeting House twice (still active) and enjoyed the “stillness” of the worship meeting, and took in the values of peace, compassion, service, tolerance, and the belief that God the Divine rests within each of us.  I saw this in action in both Dover and Ramallah, and it certainly informed me more about my faith history, but in the end it didn’t capture me enough to re-invent myself as a Quaker!

More recently, Marcia and I have visited a couple “mediums” locally.  The ability to communicate with those “on the other side” seems remarkable, but the skeptic in one’s self is easy to bring out.   But I have been convinced, by the particular details that the mediums have been aware of, that individual spirits exist after death, and they can communicate and sometimes have important messages for us to share. If you haven’t tried a psychic medium, give it a go – it can transform your spiritual beliefs.   I now believe I am surrounded by loved ones who have passed away, and they are guiding and comforting me through my life journey, and probably making sure I learn my life’s lessons!

I became fascinated by “near death experiences” (NDEs).  The first one I read about was a very compelling story (Proof of Heaven) of a neurosurgeon in Virginia by the name of Eben Alexander.  Dr Alexander was one of the best and brightest neurosurgeons, Harvard-trained, a church going man, and he was skeptical of any NDE’s he had ever read about.  But one morning he collapsed into a coma, and eventually was diagnosed with a strain of e coli bacterial meningitis.  Very rare, and he was on death’s doorstop for close to a week.  He experienced an incredible and unbelievable journey.  He attempts to describe this place and journey: the richest music, purest light, and brilliant, ecstatic, stunning explosions of light, color, love, and beauty, often without time boundaries.  He experienced multiple universes.  The overwhelming messages were that we are loved and cherished unconditionally, we have nothing to fear, and there is nothing we can do wrong.

Conventional medical wisdom holds that consciousness is produced by the brain, and most medical experts have dismissed such an experience as a product of some level of consciousness – essentially a very powerful dream.  But Dr Alexander knew that his particular condition meant that there was zero brain functioning, and there is no way to explain this in terms of the rational theories we have constructed.  Consciousness must come from outside the brain, and where it comes from is a complete mystery.   Thus the credibility I have to give to this scientist and doctor who can’t explain the NDE other than as a divine mystery.

One more point to validate Dr. Alexander’s story; he described a beautiful young girl as his angel-guide while was on the “other side”.  Several years later, he discovered that he had a sister who he was separated from at birth, and never knew of her existence. He was sent a photo – and of course the photo matched the angel-guide….Hmm?

The next book I read on this subject was shortly after I got my cancer diagnosis.  It once again gave me great faith in a spiritual eternity, and faith that we have nothing to fear in human death.  Anita Moorjani tells a story similar to Dr.  Alexander, in her bestseller Dying to be Me.  A young Indian woman in her 30’s, she lay dying in a Hong Kong hospital, after a 2-year brutal fight with leukemia.  Her organs and body were shutting down, and her medical team and family thought she had just hours to live.  But she later reported a separation from her body, and being able to listen in to conversations about her status, even in other conference rooms in the hospital.  She even “saw” her brother getting on a plane in India.

Like Eben Alexander, she experienced an after-life that she had difficulty putting into words.  The metaphor that struck me most was her metaphor of “heaven”:  Imagine the world’s greatest and largest warehouse, and one that can be only experienced by residing in our physical world.  In reality, we experience only a very tiny corner in this space.  When we awaken to the many infinite possibilities, it’s like flipping a switch in this warehouse that reveals glories that you never knew existed, colors you’ve never seen, melodies you’ve never heard, skyrockets exploding, and a vastness that enriches complexity, depth, and breadth into eternity.

More recently, I have explored the concept of reincarnation.   Why not?  It’s not discussed much in Western religion, but it turns our most other spiritual practices include this in their belief system. It started when a long-time friend, who lives in Southeast Asia now, told me over coffee one day that he has had “past life regression therapy”.  It was therapy to understand the lessons that he had to overcome and various aspects of his personality that he wrestled with.   He was convinced he lived lives as a battlefield warrior in Europe in the 1500’s, and as an Egyptian among the pharaohs.

And as any student of WW II knows, General George Patton was convinced he knew the detail of a battleground in France, despite having never set foot in France in his life.

A recent lunch with a well-known business leader in Maine led to a discussion that he is positive he lived a past life in the 19th century as an Indian chief.  He has explored the Dakotas, and just knows places and events that are intimately familiar.

So I read the book Many Masters, Many Lives, by Dr Brian Weiss.  He documents how a young woman came to him for anxiety treatment, and over a couple years submitted to hypnosis, eventually revealing 77 past lives!  Many of these stood up to historical standards, and were not something she could remotely know in her present world.  And she even shed light on a dead son of Dr Weiss, who she could never have known details about.

I can’t explain all this, but remain open to the mystery and the calling of a divine spirit.  It shows up as I boil this all down into what I think spirituality means to me.

I have also come further along my spiritual path the last two years in my battle against cancer.  Lots of reading and reflecting, including making friends and attending a workshop run by Terry Fralich who focuses on the principles of living our lives in a very purposeful and mindful way.  I have introduced Conscious Leadership at our workplace – figuring out how to get the most meaning out of our lives and what matters most.  Mindfulness has become my new mantra, and meditation, walks on the beach, and just enjoying the moment have become new ways for me to stay centered in my life.

So here it is, after my long journey:

  • We never truly die; we are infinite souls that each has a purpose – that is, to experience love in its most ultimate form.
  • Love and fear are the two most basic emotions. When we are born with the divine love of a newborn, we experience the all-encompassing and infinite spirit.  Eventually we develop a sense of identity, and ego, and we develop defense mechanisms.  Grace is achieved when we can release our fears and our insecurities, and return to love.
  • Live your life fearlessly! Trust the wisdom of our infinite self. Giving up the fear of death is extremely liberating.
  • All is perfect, and always will be. And time exists as a dimension we are passing through –  there are many parallel universes.
  • We are all One, and we are all Connected. The world will be a much more peaceful and loving place the sooner we can all realize this truth.

So that’s it!  Live fearlessly, know we are all one and connected, and don’t sweat the small stuff. Release yourself into the eternal Grace that is available to us all.

I am not giving in, and I think I have figured out how to truly “beat it”.  Onward and Upwards, Savor the Moments, and Keep Buggering On!

Cheers!

Keep Buggering On

You can get a sense of my last two weeks simply by reading the title of my last blog post – “The latest roller coaster ride, or expect the unexpected”.  Another way of thinking about this theme is the adage that “for every action there is a consequence”, and that we most often can’t predict what that may be.

At any rate, last Saturday night found me in Maine Med’s Emergency Room for the 2nd time two weeks.   Scans showed that all of the “internal plumbing” rearranging had produced an internal infection, and I had to respond to that via antibiotics; and I was dealing with more pain, and some shortness of breath as well.  (Two out of three weeks lying in a hospital bed wasn’t helping either!)

So I finally sprung out of Maine Med end of day yesterday, albeit with some friendly oxygen canisters somehow following me home!

By the way, the outpouring of support, love, and affection have just continued to amaze us.  It’s very personal and meaningful and so heartfelt.  We certainly want to respond when and where we can.

Our three children deserve a shout-out as well.  Despite a heavy class schedule (and still running Boston College for another week or two), Olivia has spent more time in Maine than in Boston recently, and assures me that her grades won’t go down too far.   Hannah and Philip seem to have bosses that don’t require them to be in an office, because they have done a LOT of work from a hospital room!  And Marcia, well….she just keeps getting better and better.  She is simply amazing.

This week we will develop a new plan, including when I will resume the nivo treatments.  I am REALLY getting it that we can’t make long-term plans in this cancer fight.

A friend a week ago or so shared that Winston Churchill, a personal favorite of mine in terms of historical character and leadership, and famous for such lines as “Never, never, never give up” and “If you’re going through hell, keep going” had another famous saying in dealing with adversity:  “Keep Buggering On”.  This seems very appropriate wisdom!   So, add K B O, to Onward and Upwards, and Savor the Moment.

To all my friends dealing with adversity in whatever manner:  K B O!

The latest Roller Coaster Ride – or Expect the Unexpected

This cancer journey is definitely like a roller coaster, with twists and turns you simply can’t anticipate.  It’s definitely not linear or predictable, and every time we have a “plan”, in comes some new twist or turn that nobody could predict was coming.  It requires flexibility and agility, on a personal level, more so than I have ever experienced in a professional setting.  It has  required us to expect the unexpected.

The latest course on my personal roller coaster adventure is that last Sunday I started having pains in my lower back and kidney area, and my family brought me into Maine Medical, where I had a CT scan that showed us what was going on.  Basically there was an enlarged tumor blocking and pressing on my left ureter, which is the tube that connects that left kidney to my bladder.

So I got my first-ever ambulance Sunday night from Maine Med to Mass General.  Monday we developed a new plan, which included a nephrostomy, that places a tube into that left kidney and drains into an external bag that must be emptied 4 or 5 times per day.  With some other pain management to control, I ended up not getting home until last night. My immediate family barely left me alone this week, and provided lots of comedy…

I was due to have my last round of brain radiation, but my oncologist said we should alter our focus from the brain to my abdominal area.  Another twist!  Of most concern is that the CT scans showed continued growth in my liver tumors, meaning that the nivo (immunotherapy) isn’t working yet.  There could be some false imaging, or the other significant reality is that the nivo doesn’t often work in just two sessions.  I had session # 3 on Friday, and session #4 in two weeks, and then suspect we will do scans again.  Praying deeply that it works!

So I now can count on several new “firsts”.  They weren’t on my bucket list, but I can learn and relate in new ways.  These firsts include:  first ambulance ride (Rt 1 north of Boston has a LOT of potholes), first external bag (which I know a lot of people have to deal with), and I am losing my hair for the first time, allowing me to get a new styling!

As next month will be two years in this cancer journey, I started thinking about all the symptoms my body has dealt with, from either the disease or the treatment.  I am sure I am leaving some out, and many have been more minor than major:  nosebleeds, nasal congestion, rashes, fatigue, numbing of my feet and hands, sleep deprivation, dry mouth, eye irritation, mouth sores, face “burning”, severe headaches, speech slurring, loss of use of right hand and arm, loss of hair, constipation, kidney /lower back pain… I feel like lately we just have one symptom under control, and another one comes down the pike, like a cruel video game.

And over these two years I have had:  3 nasal surgeries, 2 brain surgeries, 33 rounds of nasal radiation, 12 rounds of brain radiation, 4 months of chemotherapy, 3 rounds (so far) of immunotherapy, and a nephrostomy.   And a whole pile of drugs and medications!

And the weird thing is – I feel very fortunate!  For most of 2015, I was NED (cancer-free).  I was able to fully engage in my business, and had a family trip to Greece and Turkey in the spring, along with business travel to Asia and the Middle East last fall.

AND – I feel very lucky compared to many other mucosal melanoma patients. A few dozen of us are on a private Facebook website, and there are some very tough stories – severe pain, nausea, colitis, thyroid complications, bronchitis, internal bleeding, and other major surgeries.

And I don’t feel “brave” going through this journey.  It’s a matter of simply doing what you need to do, and limiting your fear about the future (and ultimately death).

So, what is one to do with all this?  Count my blessings for my life to date, and keep fighting the fight to do the best I can do.  Don’t focus too much on the future, put one foot in front the other, and enjoy the present.

In other words:  Onward and Upwards, and Savor the Moment!

Moments to Savor

I feel like I am in the middle of it, for sure.  My medical treatment is first and foremost in my life, and consuming much of my energy.

This week I had round 2 of my nivo treatments, which are the great hope for ultimately beating this disease.  The side effects for me (everyone is different) are some G.I. complications, which are largely under control now, and general fatigue.

I am also undergoing 13 rounds of conventional radiation aimed at my brain.  The last I left off was that we were going to do 1 high-dose treatment, but the radiation oncologist determined this would be a better approach as he suspects tumors in the brain lining as well, and this needs a lower dose and more of them, to get to the proper area.  These are daily trips to Boston  –  and we have the drill down, having done 33 rounds in the fall of 2014.  It’s all pretty uneventful, as we are in and out of the radiation unit in 20 or 30 minutes.  Fatigue can set in as a result of this treatment as well.  I am more than halfway through, however – 5 doses left!

And the final contributor to my lack of energy is the continued ramp-down of my steroids.  The steroids had given me some “juice” after my second surgery,  and as I am now almost off the steroids, the adrenal gland apparently has yet to kick in, and I am waiting for hormones such as adrenalin and cortisol to rejoin their proper place in my body chemistry.

I am used to having a good amount of energy, and always have actions to do, places to be, and things I want to accomplish.  So this is a different feel and a different place for me.  A friend this week caught me up short when she said I should look at the “gift” while I am in this place.  I think the answer is more presence, more being, less doing, less striving  A very good reminder.  I just am where I am right now, and all is okay.  I can wonder what lies ahead, but I have learned to expect the unexpected in this cancer fight, and to savor the moment when it is in front of me.  AND I am confident that this general run-down feeling shall pass too, as my other symptoms all have!

One moment to savor since I last posted on this blog was a couple Sunday ago.  Mary’s Walk is a local run/walk fundraiser, now in its 18th year, raising funds for the Maine Cancer Foundation to combat cancer through prevention, early detection, patient care, research, and survivorship.  Our Company was a sponsor and we had a small team walking, so I decided to join them.  I was quite pleased when Marcia and our three kids said they would join in as well.  I expected a team of a dozen or so in total.

So imagine my surprise when at registration at Thornton Academy, I kept bumping into a good number of personal friends and relatives – who said they were walking with Team Hussey!  Apparently son Philip put the word out a couple days earlier, inviting and encouraging a surprise showing.  We ended up with 37 team members!  It was a glorious day, and I felt like I was “walking on sunshine”.   Very meaningful and a terrific time – and definitely a moment to savor!

 

Another round to be fought

Marcia and I traveled to Boston today; I had my quarterly PET scan on Friday and Brain MRI on Monday.  Our oncologist gave us the results – and the melanoma has spread.  The news wasn’t a shock, as we knew since Christmas that there were active cells, and my body didn’t handle the first round of immunotherapy in January, so there was a decent probability there was some “action” going on.  But disappointing news still.

We have been anxious to get me restarted on immunotherapy – which we also did today, as I finally got the steroid dosage down enough.  This is a different treatment than the January treatment – less side effects and toxicity.  It’s Opdivo, also known as nivo.  It has been very effective particularly with melanoma  – shrinking, eradicating, or stabilizing tumor growth.   So there isn’t any change in our plan.  We are betting on nivo to do its work.  I will be coming to MGH for an hour i.v. drip every 2 weeks, for an indefinite period.  After 2 or 3 rounds, we will do scans again and determine if the nivo is doing its job yet.

The scans revealed a number of new spots or lesions, all quite small.  Lung, liver, and bone lit up, and there are 2 new spots also on my brain.  This is the only new possible treatment, as they think they can radiate the spots on the brain and kill them. We will go see the radiologist next week to learn more.  Radiation really isn’t possible for other organs at this point – immunotherapy (the nivo) is much more effective.

Our feelings are we are disappointed and sobered a bit with this news, but certainly not blind-sided, and it really doesn’t change the game plan.  I continue to physically feel very good, and the docs are quite happy how I have come down off the steroids, and that I was able to start the nivo today.  And of course, we continue with great optimism that I will indeed “beat it”!

 

Onward and Upwards – and Savor the Moment!

 

Influencers in my life

As I reflect on my almost 60 years of life, I am so grateful for those who have I learned from and have had a major influence on my life.

I thought I would call some of them out, and try to articulate what lessons I learned, and offer my gratitude and appreciation.  Many have passed away, but I like to think that they continue to be present and aware of my journey.   I also believe that I have more growing and learning to do, and will be here for some time to do such work – so this isn’t necessarily a recap of my life at all.  Just saying…!

I can’t possibly capture everyone that influenced my life(my first version of this post had almost 20 people, but daughter Olivia told me (correctly) it was too long), but here are some of the major forces that helped shape me to be who I am today – for good or for bad:

Olive Bowes.  My mother’s mother, she was simply known as “Bah”.  She was a larger than life character; her devotion to family love was simply remarkable.  She was old school in that she did holidays up real big, and she insisted on doing things the “right” way.  She could easily laugh at herself (more often it was a “Bah” giggle).  My high school, college, and young adult friends loved being around her, as you never knew what to expect.  She did it her way, with originality, class and humor.  I learned from her never to judge anyone, the value of generosity, treating everyone with respect, the incredible love of extended family, and just doing what you think is the right thing.

Bob Howes.  Bob was our local Congregational minister, and he baptized and confirmed me, and helped to perform the marriage ceremony for Marcia and me.  He was my mother’s employer (she was the church secretary) for more than a dozen years, and the father of my childhood best friend Eric.  I spent a lot of time at the Howes’ house, and from Bob learned that combination of strength and gentleness.  He set firm boundaries, and had a very strong social conscience.  But the underlying theme I took from his teaching and preaching is that “God loves us unconditionally”.  I grew up, thanks to Bob, with a non-judgmental loving God who feels our pain and celebrates our joys.  Bob also had a deep belief in the power of a local community that has informed my life choices and has comforted me many times.

Phil Hussey, Sr.  My Dad’s dad, Grampa, was a remarkable man.  His devotion to our family business was legendary, as he worked to make it successful for a crazy 64 years.  I came to appreciate just how much work that took, and his entrepreneurial drive and stories were simply inspiring for me as a young man.   As I began to go to the office and factory with him, as a boy, I also learned from him the value of personal relationships.  He knew everything about every employee – what sized deer had been shot, whose wife was ill, where someone was struggling, and he quietly encouraged and supported many people to get further education.  Also, he first set the standard for me for community leadership.   He was involved in everything it seemed, and could handle it all, and had that natural leadership that insisted on doing the right thing and commanded followership.  He was also most definitely very worldly, traveling to more than 120 countries, which first exposed to me to my thirst for learning about different cultures and experiencing much of what the world has to share.

Gus Todrank.  Professor Todrank was one of those passionate teachers at Colby that just got me to think differently.  He was a Professor of Religion, but irreverent in many ways, always encouraging challenge of conventional wisdom.  I took more classes from him at Colby than anyone, and he opened my eyes to my own spiritual development and life’s choices.

Loren Hutchinson.  “Hutch” was a beloved figure.  He served on our Board of Directors for many years, and was one of my Dad’s closest advisors.  He had a gruff exterior, but he was ALWAYS interested in the human side.  He spent more coaching time with me than just about anyone in my twenties and early thirties, encouraging me, teaching me lessons, and just genuinely caring.  I learned the value of listening and empathy, creative problem solving, and authentically facing up to any issues.

John Forshaw.  John was a fascinating figure.  A “little” Englishman that ran our Canadian division for years, he ended up running our International Group, and spent three years mentoring me.  He constantly challenged me, in good ways, to get creative, get out of the box (“there are no rules” was a famous saying), and to set ambitious goals.  He encouraged me to think strategically, and he also was a great student of human behavior which led to a more “rounded” me.

Ron Bancroft.  Ron was on our Board of Directors for more than 20 years, and became a good friend.  He led me to serve on many issues important to the State of Maine (particularly education issues), and I was always struck by his courage in standing up for what he believed in.  He had no issue confronting my Dad when he thought he was right, and usually Ron dealt with facts not emotions.  Ron’s personal integrity is of the utmost, and he has been a great role model for me in this regard..

Mom.  One of the biggest influences in my life, for sure.  Always caring and loving, I experienced a very nurturing childhood thanks to Mom.  I learned about not judging others, about being kind and charitable, about generosity, and about the power of love, friendships, family, and community.  Mom always wants everyone to be happy, and her cheerful and positive outlook on life, without ever complaining, has surely rubbed off on me with my optimistic view of life, and my belief in the basic goodness of people.

Dad.  Dad was always up on the pedestal for me.  From my earliest days, I think I wanted to be “just like Dad”.  I admired him so much for his natural-born leadership traits, for his personal integrity, for his insistence on doing what’s right, for his incredible perseverance and determination and courage, for his competitive spirit, for his zest for life, and for his love for his family.  Though later in life, I got to appreciate his humanity in his foibles and his warts, he has remained on that pedestal as one of my greatest heroes for sure.  I so treasure my relationship with him; I experienced him as a father for 44 years (before he died of cancer), and one of the great privileges in my life was working pretty directly with him for close to 20 years.  Of course, we did a lot of cool things on sailboats, skiing, traveling, and just having fun in our community.  I like to think some of his traits rubbed off on me, but I always feel humbled when I think how naturally they all came to him.


Marcia.
  The last of my great teachers, and probably the greatest of all.  I believe I found my soul partner to help complete me, or at least round my edges.  Marcia and I have been married over 27 years, and she has taught me so many lessons – spontaneity, appreciation for the present, kindness, gentleness, compassion,  humor, and most importantly the power of deep and abiding love.  In this phase of my life, in my fight against cancer, she has been encouraging me to slow down, and at the same time fight like hell.  We make a great team, and I am the luckiest guy in the world to have her in my life.

 

So that’s just a taste of how I got to be who I am today.  I continue to learn and explore both my inner world and my outer world, and promise myself that I will grow, and learn the lessons I am meant to learn while here in this life.  Thanks to ALL who have contributed to this point!

An important point I take from this reflecting is how many people influence our lives.  Sometimes it’s role-modeling and serving as an example for others, and at other times it is direct and specific mentoring and coaching.  I know I benefited from being around people who did both for me.  I am aware now, at age 59, that I have the opportunity and privilege to serve as mentor, guide, coach, and example  to others.  It’s a definite sign of aging (maybe “maturing“ is better), but one that can give us purpose and meaning, and leave behind some piece of legacy as my mentors and coaches surely did.

 

Onward and Upwards – and Savor the Moment!