Don't Lose Heart

Sunset Congregational Church, Sunset, Maine  June 22, 2008
For Everything There is a Season

I gave my first sermon when I was 17 years old.  This is my second sermon.

Today I am going to share our family’s experience with navigating the fatal illness of my wife Gayle.

I recognize that death and dying is unique for each family and each individual…Our story is not your story. But I believe it us useful to talk openly about death and dying.  Gayle and I did, with each other and our family and friends; that empowered us to deal with the challenges we faced.

This journey that we took with Gayle at its heart was a spiritual journey informed by our faith in God, our faith in our family, our community and yes, life everlasting.

How was this journey of faith possible?

THE DIAGNOSIS and course of the illness.
In December 2004 Gayle developed a pain in her shoulder.  Initially it was thought to be a strained rotator cuff, then a torn rotator cuff.  The doctor recommended surgery and told us to cancel a planned trip to Italy and Greece in March of 2005.  Further x-rays and an MRI revealed a tumor on her humerous.  Our doctors recommend she go to Massachusetts General Hospital for further tests and so in March 2005 she had a variety of consultations, tests and further scans.  Our second appointment was with a surgeon to review possible surgical options.  While waiting for the doctor I saw a note in the waiting room that read:

Good Morning, This is God.  I will be handling all of your problems today.
I will not need your help!  So, relax and have a great day.

I showed this note to Gayle and she said: make a copy of that.  And so I typed it on this 3 x 5 card.  To this day it has a prominent place on our refrigerator.

What does this note say: God is in charge.  Trust the process. Live every day to the fullest.

The MRIs and a PET scan revealed Gayle had lung cancer and a small spot on the brain.  When we met with the chief oncologist he asked: “Has anyone told you what your diagnosis is?”  Gayle said no and he said…”you have Stage 4 Lung Cancer…you have 6-12 months to live.”  We both sat there stunned.  I looked at Gayle speechless and briefly imagined our world ending before the year was out.  Then Gayle calmly asked: “What is the longest anyone has lived?” The doctor paused a moment and said…4 years. Stage 4 Lung Cancer means the cancer had spread from her lungs to other organs including her brain…and the spot on her brain was Gayle’s greatest concern…how would it affect her life and her writing? She was working on a novel and wanted to finish it.

This diagnosis can be viewed as a death sentence.  But it can also be viewed as a life sentence.  And this is the way Gayle and I came to view the situation.  We were pushed and pulled in the direction of life. And I do not know why we did…it is a mystery to me to this day, a good mystery.  The forces at work were diverse: medical, family, spiritual (as represented by this Church and its members and our personal beliefs and practices), support of friends and the larger Island community.

In preparing this sermon I reviewed a journal I kept.  “April 16, 2005. Gayle’s Dream: Gayle had her first “visualization,” a dream.  She told me she had an image of her brain in the back of a pick up truck with wooden rails on the side…Then suddenly she had an image of GOD coming down and sucking out the spot.”  My notes say: “I thought that was great…a very positive sign of self-healing”.

TREATMENT
Given the seriousness of the diagnosis it is natural that that your first response is to pursue all the medical options.  This means that your life begins to be organized around medicine (consultations with your oncologist, CAT scans, daily trips to Eastern Maine Medical Center for radiation of the shoulder to reduce pain and then daily chemotherapy to “FIGHT” the cancer.  As you give your life over to this medical routine you come to understand the deeper meanings of the word “patient”.
I felt helpless initially.  A natural response is to begin to look for some ways to DO SOMETHING to change the situation, to see if you can find a way to manage the process.  I devoted endless hours to a review of the scientific literature searching for some definitive answer, some new therapy.
It turns out for Gayle this would not be the path taken.  She had an adverse reaction to the chemotherapy…extreme bladder pain (a rare side effect) …which was treated with aggressive pain killers which weakened her further and also led us to explore other approaches.

And of course our daughter Jennifer and our son Michael had their views on how to address the situation that ranged from denial that she had cancer to advocacy for vigorous exercise.  And so we together explored meditation, supplements, exercise, visualization, spiritual gurus, and Chinese herbs. etc.

Ultimately the path we chose was complementary medicine after talking with Rev. Alice Hildebrand and her husband, Rev. Allen Myers about Allen’s experience with cancer and how they combined conventional medical treatment with diet.  This led us to start exploring Macrobiotics, first by having 2 meals a week prepared by Deborah Wiggs of Blue Hill and then learning meal preparation from her.  Macrobiotics is basically a whole grain & vegetable diet,

Our first effort at preparing a meal was a revelation.  Gayle and I were in the kitchen cutting up vegetables and cooking brown rice when she started to cry.  “I just can’t do this she said.”  Instantly I said great…I will do it, you focus on resting and healing.  And so for several months I did all the cooking and our typical day started with Miso soup, steamed or sautéed greens and brown rice.

CAREGIVING
I was the primary caregiver for Gayle.  Being a caregiver can be a great joy and also a great burden.  It is a complicated dance.  For me it was surprisingly, mostly joyful.  Now Gayle and I had been married for 49 years and we were deeply in love and that of course makes a difference.  However, I believe I was prepared for this role even before I met Gayle.  When I was a sophomore at the University of Michigan my Aunt Audene, developed bone cancer.  Audene lived in a town about 3 hours away from my parent’s home in Bowling Green, Ohio.  My mother decided to invite Audene to come to our house and to care for her with the help of her younger sister Shirley, a former nurse.  When I came home for a fall break I witnessed the joy and the love that the three of them shared.  At the time I did not think much about this but today I believe that seeing this caregiving modeled in this way prepared me fully for the role of primary caregiver.

As a caregiver, your initial instinct is to bend over backwards to help.  You want to do everything for your partner, to lighten her burden so she can focus her energy on healing.  Well, it turns out that bending over backwards is not a very comfortable position to be in…and you can’t see things very clearly from that angle.

There is a problem here: Focus was too much on me, what could I do…not on Gayle and her choices.  Once during a visit with Dr. Huff, Gayle’s primary care physician at Island Family Medicine, Dr. Huff stopped me in the middle of my list of observations and questions and said: “Dan, you are hypervigilant”.  That word stopped me in my tracks.  She had caught me.  The word described me perfectly.

This is a common problem with caregivers. That’s why you hear that the first rule of caregiving is: take care of the caregiver. Being a caregiver has it satisfactions but it also disrupts your life.  It certainly did mine, especially the way I started my day.  I have been a runner for over 30 years and began each morning with my running.  Now, with our new regime, I started each day with Gayle and her needs.

So how was I to lighten up?  How was I going to take my cues from Gayle?  After all it was her life.

Our daughter Jennifer suggested that I find a mantra.  One morning on my morning run as I was running up the hill leading to the top of the Settlement Quarry off Oceanville Road it came to me:

I am on a path to celebrate life.

And so from then on that not only became my mantra, but when I reached the top of the quarry and looked out to Isle au Haut I offered up a morning prayer seeking direction and support in my quest to support Gayle.  And I still offer a prayer every day I run to top of the Quarry.

ACCEPTANCE
A major influence in supporting my caregiving was Gayle’s amazing acceptance of her situation.  She never asked: “Why me?”  Yes, she had been a smoker, but she quit 20 years ago.  You can see her acceptance in the dream and in her writing.  Gayle did not live the last years of her life fighting cancer.  She lived her life fully with the cancer at the margin of her life.  Her calm acceptance that her life was going to end was her gift to me and to Jennifer and Michael.  It gave me confidence to continue on with her and support her life choices.

I also continued my active involvement in the theater that provided a wonderful emotional outlet for dealing with stress.  Now I have been actively involved in the Opera House play reading series and the Cabin Fever Theatre group that puts on a musical every Spring and I had been in each show for the last 5 years.  I initially thought I was not going to try out for the 2008 production of South Pacific.  However, Gayle and Jennifer persuaded me to go to the tryouts and so I thought I would see if there was a small part, as I would not have the time to devote to a larger role.  As soon as I entered the Reach Performing Arts Center and saw my theater friends I felt at home.  I ultimately got a significant part with over 150 lines and 7 scenes.  Gayle and Jennifer helped me with my lines and I was able to continue through the rehearsals.  Gayle was not able to see the show as she died 18 days before it opened.  Somehow I was able to perform…no, not somehow, my whole support system and the care I had taken of myself enabled me to continue on with joy.

SUPPORT: That is an important concept.  Indeed without the support of our family, friends, this religious community, the wider community on Deer Isle and finally Hospice we could not have navigated this path with such ease.

COMMUNITY SUPPORT
First, I want to speak of community support.  We moved here full time 11 years ago from Rhode Island where we had been for 28 years.  If we were still in Rhode Island many of our neighbors wouldn’t even know Gayle was ill until they read the obituary that she had died.  Here, wherever I went (the bank, the store, play rehearsal) people asked: How are you and Gayle doing?  And they really wanted to know.  And I could freely tell them.  Here we were enveloped in a sea of love and support.

SUPPORT GROUPS
Another critical part of our support began in March of 2006 when Gayle and I joined the Cancer Survivors/Caregivers Support Groups sponsored by the Healthy Island Project and led by Allen and Alice. The caregiver group was especially helpful to me.  Here I could talk openly about all the concerns I had and get support of other caregivers and benefit from the practical experience of Alice and her wise council always delivered in a way that I could hear it.  This helped to normalize the living/dying process we were going through and was a great comfort.

In November of 2007 Gayle and I decided to contact Hancock County Homecare and Hospice and to begin to prepare more actively for the end of life.  We are deeply grateful for the care and comfort provided by the nurses and aides of the Hancock County Homecare and Hospice staff.  The volunteers of Hospice of Hancock County were also a steady help during the last weeks of Gayle’s journey.  Indeed, they often came for a visit with Gayle on the evenings that I had rehearsals for South Pacific.
Our whole family gathered for Thanksgiving in Maine and rather than returning to Los Angeles Jennifer decided to stay on for a few weeks.  Ultimately she stayed with us until April.  She added a whole new dimension to the caregiving and it was a special time for Jennifer and Gayle and enabled them to deepen their relationship.  Her special Amazon Herb supplements, aromatic therapies and oils added special healing powers in ways that amazed the nurses and aides.

However, her active caregiving also had an oddly disturbing effect and resulted in the two of us having a number of angry confrontations.  What was this about?  Well, the answer is pretty simple when viewed from a distance but not easy to negotiate at the time.  As the primary caregiver, I was being replaced.  I was being pushed out of a job.  A job that had become the center of my life.  Fortunately, Jennifer and I love each other deeply and so just as we can have a full blown argument we are going to have a full blown resolution.  I can truly say that the strain was not fully resolved until the last days as I let go and Jennifer took charge.  Let me also note, this strain is truly in the past and leaves no residue to this day.

One time a friend asked me if I was ANGRY.  I said no…at times sad, and a little bewildered but never angry.  The problem with anger is that it starts inside and captures your gut and radiates out.

Oh by the way we had taken out trip insurance for our planned trip to Italy and Greece.  We rescheduled the trip in October 2005 and also took the whole family on a Caribbean cruise in February of 2006. Gayle had said she always wanted to take a trip down the Nile and so in November 2006 we took a trip to Egypt with our Friends Elsa and Jerry Grieder with a side trip to visit college friends Byron and Rachel Metrikin-Gold in Israel.

How was this journey of faith possible?  It certainly did not proceed in a straight line.  It was not planned in the sense of deciding ahead of time what we were going to do every step of the way.  I believe the journey was possible because we were open to life.  We were able to live each day fully and be open to the forces at play in this wonderful, mysterious life, especially open to the spiritual forces, and the love and support of family, friends and community.

Dan H.