Who I Am and Why I Write

July 31, 2014

  Who Am I

Artist, Pianist, Teacher, Writer, Child of God

Why I Write

I write because esophageal cancer forced my family on a journey we did not choose.

I write because the suffering esophageal cancer delivers on families and their loved ones leaves me breathless.

I write because of the Helper I turned to when facing terminal cancer with my husband, Werner. It broke my heart, and tested my courage and faith.

I write because I was his wife, lover, friend, and support during the three years we journeyed the esophageal cancer road together.

I write because of who protected me from despair.

I write to testify to one man’s never quit courage, perseverance, and faith when esophageal cancer assaulted his physical strength, emotional well-being, and his will to live.

I write because I must.

 

I write because it was his story, my story, our story!

 

 

 

 

 

Today I Remember A Beautiful Man

June 27, 2014

 

 

Eleven years ago, cancer stole my husband. Sometimes it seems like yesterday when I look at is handsome face. However, of this I am certain, I was blessed to have this beautiful man in my life for almost 33 years.

After navigating through the dark waves of grief, I entered the next lesson, transitions. This phase of rebuilding my life stretched my learning curve, blessed me, made me cry, occasionally annoyed me and made me laugh. Following  is the annoyance to laughter transition.

I remember Werner with the story of our hike to a remote pond campsite and the transition that now makes me smile. It all began after I bought a two person tent for Werner.

I bought the tent because my Swiss husband, and life-long mountain climber, expressed an interest to hike to and camp-out at remote mountain ponds. However, when just the two of us hiked to these nether reaches of the wilderness, my comfort level never quite hit the one hundred percent, I am fine with this, button. Cell phones did not exist. Bears did.

On this camping trip, Jurg our youngest son and home from college joined us. While they packed their individual rucksack with the overnight gear, I had spread out on the kitchen table, anticipation laced their conversation. They filled the inside of their backpacks with food, water, a bottle of French red wine, sweaters, my pencils, and sketchbook. Once they decided who would carry  3 sleeping bags, 2 sleeping pads, Jurg’s camping hammock,  fishing gear, and the tent, they strapped the gear to the outside of their backpacks. I carried nothing. Packing done, we were off.

We couldn’t understand this phenomenon because the end of the trail opened to East Pond, a crystal clear pond nestled in the mountains. Knowing this, we nurtured our hopes that we would be the only party to enjoy the pond’s quiet beauty, swim in the cold water and enjoy dinner at the water’s edge.

Our favorite East Pond camping spot offered an open large sandy beach  and a prime view of the pond. While we hiked I remembered our other dinners shared around a campfire and watching the sun dip behind the mountains. The thoughts lightened my steps. As day transitioned to early evening, Werner pampered me. He boiled tea water for me on his small propane burner. Warmed inside by his care, I gathered and handed him dry sticks to start a campfire. I loved sitting encircled in his arms and watching the sun say a fiery

As day transitioned to early evening, Werner  used his small propane stove to boiled hot water  for tea. We gathered dry sticks to start a fire in a rock pit. The sun made a last fiery goodnight, before it disappeared behind the mountain ridge. Blackness descended on us until the full moon appeared behind the mountains. In front of us the water’s surface reflected the yellow face. Behind us, the forest disappeared in the night. Frogs presented a free symphony  surrounded by the sound of water caressing the shore and slapping against rocks.

The  ink-black shade pulled down over the forest, gave light to my darker imaginings.  Of course, unseen critters must be watching us from the void. Whatever my childish imaginings, I loved to see Werner relax. He was at home in the mountain wilderness, in his element and happy.

On this particular hike, transitional turmoil played havoc with our chosen destination. We arrived at East Pond, immediately disappointed to see our favorite campsite  occupied. “Not to worry, my positive thinking Werner exclaimed. “We will take the campsite over there. It’s even better than our usual one.” He pointed across the pond.

“Not to worry, my positive thinking Werner exclaimed. “We will take the campsite over there. It’s even better than our usual one.” He pointed across the pond.

I looked across the pond at the open campsite. “Yes,” I agreed. “It’s beautiful, but it’s across the pond and inaccessible.” Water covered the normal sandy and rock trail around the pond  and extended into the brush on the far side of the path. I thought my logical observation closed the subject.

Water covered the normal sandy and rock trail around the pond  and extended into the brush on the far side of the path.

I thought my logical observation closed the subject.

Not to be deterred, Werner told us that he knew another route around the pond.

“Really,” I said, “how do you propose we find that route, as all normal routes to the campsite are underwater?”

Without hesitation, he said, “we will bush-whack.” I probably rolled my eyes at this point, but not to spoil his fun, I followed behind Jurg and him. We continued to walk along the normal unobstructed path, arrived at our favorite campsite, greeted the occupiers and trod on for a few moments.

“Wait a minute, stop,” I said. The normal trail ended. I felt my boots squish in the muck under my feet. “With all that gear you carry, you mean to tell me that we are going to bush-whack through that dense jungle and over fallen trees underfoot?”  I carried nothing.

“We’ll be fine,” Werner assured me. Bush-whacking transitioned us from the fine familiar unobstructed path to the jungle. We squeezed through saplings packed tight together. and gingerly stepped up and over downed trees. The forest floor was a booby trap of holes made by rotting  trees crisscrossing each other. Step wrong and the overgrown brush covering these holes became a leg-breaker.

With every step I mumbled,” of course, we’ll be fine,” as my foot dropped into another hole. Humidity levels in the forest added to my misery. I climbed over tree trunks, stumbled into hidden holes, and caught the toes of my boots in the tangled mass of rotting limbs and sticks. My shirt stuck to me skin.

I chuckled when my two adventurer’s progress halted mid-step their backpacks stuck fast between two trees. I’m sure I mumbled some less than encouraging word, as I  helped set them  free. Several times I repeated the task. Being trapped between trees did not deterred the high spirits of my two men. They laughed, sometimes they cursed, but they trudged on like two boys on a great mission of discovery.

Whatever shine I had at the onset of this bushwhacking adventure, I lost somewhere between stumbling over twigs and trees, slapped in the face by twigs  I didn’t see, and bitten by mosquitoes buzzing around my ears. I swiped at the sweat dripping down my face and c worried. “What happens if one of us breaks a bone?” No response from my leaders.  I nurtured my annoyance. They tolerated my pain in the neck grumbling. Realizing my grumblings did nothing to advance my progress, I surrendered and slogged on through the jungle just to get it over with.

When suddenly,  one of my fearless men told me to look up. I did. The tops of the trees thinned out to allow light to penetrate into the jungle. I saw the tops of trees instead of toppled trees.

My look at the bright side, son and husband encouraged me. Look ahead, they told me. More light and fewer trees tells us there is a clearing  up ahead.

A few moments and stumbles later, we entered a worn path and sunshine. We walked onto flat clearing at the water’s edge. Maybe they said to me, now this is beautiful don’t you think. I had to admit to its beauty. I looked at crystal clear water and surveyed the surrounding mountains cupping the pond in its embrace. I smiled, and maybe I said, wow. Inside, I felt ashamed for complaining throughout the twists and turns of transitioning from the easy

Maybe they said to me, now this is beautiful don’t you think. I had to admit, yes, it was the loveliest campsite on the pond. I smiled. Inside, I felt a bit sorry for not trusting my two leaders throughout the twists and turns of transitioning from the easy path to no path.

Throughout the bushwhacking experience, my husband and son treated me with undeserved grace. Werner’s  smile said it all.

Once they set-up the campsite, I listened to their laughter as  their fly fishing lines cast an arc through the air. I sketched  the scene. The jungle was forgotten. Today, the memory of our hike to East Pond makes me smile. Most of all I remember the beautiful man I shared it with.

Today, the memory of our hike to East Pond makes me smile. Most of all I remember the beautiful man I shared it with.

 

What I learned bush-wacking around East Pond.  Werner never shied away from traversing difficult  and unfamiliar territory.  I often grumbled to myself when he led me on challenging terrain or up steep trails. When we reached our destination or mountain summit, my grumbling turned to joy and the satisfaction that I did it. He always let me choose the pace. From the day we began our path of our life together, I walked secure beside him, because he had my well-being at heart.  He challenged me to work through my fears, and too often my anxious nature.

When we reached the goal together, his smile said it all.

 

http://dailypost.wordpress.com/dp-writing-challenge/memoir-madness

Gate 7- Ivor Lewis Pull-up Post Surgery

May 30, 2014

The climb out of post-surgery hell

It’s obvious every surgical procedure to treat a cancerous tumor is different. What each surgical patient experiences post-surgery and recovery is also different. With that in mind what I write here comes only from what my husband and I experienced during his post-surgery and recovery in 2001 from The Ivor Lewis Pull-up procedure. We faced his physical challenge in which he described himself this way, “I am an organized train wreck.” I described the recovery this way, “The climb out of hell.”

Once we returned home from the hospital, many challenges confronted us. We learned right away Werner’s progress toward recovery required us to take on our new roles to become the medical team at home. We learned how to cope with his eating challenges, his inability to swallow water, zero strength, and flat-line fatigue, depression and refusal to use the feeding tube put in place during the surgery. 

I think of the two of the lowest times we experienced post surgery. One evening in June, we went out to dinner at our favorite restaurant. My husband ordered venison his favorite dish. The order arrived. He picked up his fork and knife, cut a small piece of venison, and then he placed his knife and fork back on the plate. “I can’t eat.”  To my horror, I thought, oh no, does this mean he can never again eat? 

Without the benefit of using the feeding tube after the April surgery, Werner continued to drop weight to a crisis point, physically and emotionally. One afternoon, I found him sitting in the living room and uncharacteristically despondent. He looked at me and said, “If I had known what this surgery was going to do to me, I would never have had it. I don’t want to live my life crippled.”

I knew not to say it’s okay or any other platitudes. Words were not fit for the devastation my husband felt. I held him. We did not speak. We sat for a very long time. Outside the window, the gardens were in full bloom under June’s clear blue sky. The sun filtered in the room where we wrestled with the agony until it passed.

Some days after this June low point Werner agreed to receive nutrition from the feeding tube. We set-up the feeding tube pump by our bed. Every night he hooked up to the pump and set the flow on a slow drip. As he slept, life-saving nutrition fed him. He began to gain weight. Slowly his energy level rose, and his strength returned while we experimented with introducing foods he found tolerating.

By mid-July, we began to walk very short distances. Later in August, we hiked eight miles. We celebrated this accomplishment at our favorite restaurant. He enjoyed his order of venison. In October, we celebrated the removal of his feeding tube with a spa weekend booking, a gift from his sister who lives in Switzerland. To my surprise, Werner reserved an hour each day to play tennis at the Spa’s indoor tennis court. The tennis balls he volleyed to me came hard, flat, and fast over the net. In November and fully recovered physically, emotionally, and spiritually, he buckled into his ski boots, stepped into his bindings, and headed out to the chairlift.


 

       

 

The Werner Zwahlen Ski Education Foundation

April 8, 2014

My speech given at the first scholarship award ceremony from Werner’s Foundation. Why give this particular award, when at the end of the day, alpine racing is all about winning or at least coming in second or third for a chance to stand on the podium, receive a medal and the applause for well done?

Why give an award to the racers who lost the podium position by a half-second, or a finish time way back in the pack? For some racers, try as they might the podium seems just out of reach?

To understand the importance of the Werner Zwahlen Foundation Scholarship is to get to know Werner’s character.

Years before cell phones and the availability of high mountain Swiss rescue helicopters, Werner and three of his friends began a perfect day of skiing down from the summit of a 3000-meter glacier.

While traversing a pencil-thin line running perpendicular to the glacier headwall that steeply dropped down into an exitless bowl. Midway into the traverse, one of the friends fell off the trail and disappeared down the headwall.

Without hesitation Werner volunteered to ski down the headwall and attempt a rescue should his friend suffered injury. He checked his gear, turned and slipped over the lip and the almost vertical headwall down the snowfield to the floor of the bowl.

When he found his friend too injured to stand and climb back up the headwall, he administered what first aid he could, and knew he have to carry his friend up to safety. And so he did. That day on his beloved mountains, his courage and tenacity saved his friend’s life.

Years later, Werner faced another day that would test his courage. This test did not begin on the white face of the Alps. It began on the white sheets of a hospital bed. The day his doctor said, “You have advanced esophageal cancer.”

Silence hung between the diagnosis and Werner’s response, “Bummer.” The doctor began to speak, but Werner wasn’t listening. He said to no one in particular, “Why me? Why did this happen to me?” No one answered. Who could? Werner spoke again, to someone, not to us. “Wait I’m sorry. I can’t believe I just said that.”

In that awful moment something extraordinary happened. He pushed out of the starting gate onto the course of his race for life against esophageal cancer, a lethal competitor. He recovered his line, set his edges and drove on through cancer’s first assault, self-pity. From that moment on I knew he would never be cancer’s victim.

The brutality of this race course tested his courage, his physical strength, and his faith. Whatever cancer threw at him to knock him off course, he hung onto his faith in God, the underpinning of his strength to stay the course. Again and again he pushed on to win the next and the next gate with the same extraordinary courage he exhibited that day years ago, when he rescued his friend from the belly of the glacier.

Certainly most young racers are not facing the challenge of fighting cancer. But in Werner’s eyes their life challenges were and are equally important if not more important, he would say, than his circumstances.

Sometimes for a young racer, the challenge to win a podium position is repeatedly out of reach. Because of this it hold the potential for discouragement that might lead to the decision to quit.

Certainly Werner coached his athletes to win, but his coaching went beyond the technicality of turning in gates. Werner believed success in alpine racing is not only measured by talent and result, he believd success was also measured by an athlete’s will to develop their strengths with a no quitting attitude to find the courage to face and work through tough challenges.

Because of how he led by his own example while coaching and his race for life against cancer, he inspired several generations of young people to become the victor and not the victim on the Podium of Life.

The Werner Zwahlen Ski Education Scholarship is awarded to the athletes who have faced their challenges with courage, tenacity and spirit that exemplified Werner’s character.

This speech received a standing ovation not because of my delivery, but because of the Werner and The Podium of Life.

These words from one of the athletes parent.

I sent your speech onto 30 family and friends, and our minister. It is most inspiring and carry’s forth a message of new beginnings, hope and faith. At the awards banquet our entire table was so moved by your words and reflection of your husband’s character.”

This is why I write, to encourage and bring a message of hope beyond hopelessness.

Diagnosis Terminal Cancer-Part I

March 18, 2014

DSCN3871“I look to the mountains, where will my strength come from?

January 2003 – Who can save my husband – this mountaineer, a dad, a man of integrity, courage and faith, this man known as a “great guy.” Who can save him from terminal cancer? Can his doctors, can God, can I? When all the answers are no and the agony of terminal cancer trumps coping, how can I sustain my courage to face what is coming?

By Christmas, Werner said to a friend who said, “How are you doing?”  “When I wake, I don’t have any energy. I feel wiped – out. I’m just hanging on.” It set my alarm bells ringing.

On January 28, 2003, the sun rose pale and cold and the cancer wheels ground forward. As usual, we walked in silence from the parking lot and into the hospital for the appointment to hear the CAT SCAN results. Holding hands, we walked our beaten path along the oncology corridor. As usual, we stopped to look at the artwork displayed doing its job to distract. In crowded Oncology, we found an empty love seat along the wall. We sat. We waited. Having had lots of practice, we waited well. He read. I wondered.

The nurse called our name. I said, “Okay, love, here we go.”

Always upbeat, he slipped his arm around my waist. “We’ll be fine.”

We entered the back rooms where test results might mean a matter of life or death.

In our tiny windowless exam room, we sat in our usual worn waiting chairs. But nothing about this day turned out usual. Werner’s nurse stayed. She usually left after she entered Werner’s vitals and weight loss in his health chart.

Werner’s oncologist arrived, and pleasantries followed. “Hi, Carla and Werner. How are you?  Nice to see you. How’s the skiing Werner?” All the while Werner lived with cancer’s assaults on his body, his extraordinary energy and continued active involvement always amazed his medical team.  His oncologist said, “How are you doing?”  “Great,” was Werner’s reply.

And then the silence hung heavy and lingered too long before the hammer came down shattering our world like the breaking of a crystal glass.

“The CAT Scans are back, and I am afraid the news is not good. We are sorry to tell you that your cancer has returned.”

“Bummer,” said my beautiful husband.

I dared not look at him.  My fragile emotional hold retreated to a hiding place for protection.  I reached for his hand and held on tight to hear cancer invaded Werner’s lymph nodes, pancreas, and liver. It spider-webbed around vital organs prohibiting surgical removal. Cancer acted like a parasite. It ate his food first sucking out the nutrients and left him the trash. And then came the worst, “There is no cure. Perhaps six months.”

Everyone’s eyes fastened on us. Tense. Silent. Waiting. How will we respond? Anger, hysterics, blame?  No, we sat. We did not move. The atmosphere in the room felt oddly calm.

The oncologist broke the silence and offered the palliative program chemotherapy and without hesitation, Werner said, “I will fight. When do we start?”

As if on cue, a palliative care doctor arrived followed by his nurse and Werner’s nutritionist. After we had accepted all the palliative help offered, we stood to leave, amid hugs and good wishes. Werner walked half-way through the door, turned and said, “I am going skiing tomorrow.”

 

Part II: Beyond coping when facing a loved one’s terminal cancer. Who Will Help?

“My strength comes from God who made the mountains.”

Carving for a Cure- Loon Race Team Ski-A-Thon

March 2, 2014

19957_319494651076_2706105_n 

APRIL IS ESOPHAGEAL CANCER AWARENESS MONTH

Norris Cotton Cancer Center & Boston Children’s Hospital Benefit From Loon Race Team’s Efforts. Over $10,000.00 Raised from the First Annual  Ski-A-Thon Fundraiser, Carving for a Cure for Cancer, Held at Loon Mountain, Lincoln, NH,

IN MEMORY OF WERNER ZWAHLEN, WHO LOST HIS BATTLE WITH ESOPHAGEAL CANCER JUNE 27, 2003                                                                                            

The money will be shared with Norris Cotton Cancer Center At Dartmouth Hitchcock Medical Center in memory of Werner Zwahlen, for esophageal cancer research. Werner was Alpine Director of Loon Race Team until his death.

 In January 2003, Werner’s cancer returned. Because cancer invaded his vital organs and metastasized throughout his body, surgery was impossible.  Along with the cancer’s return facing terminal resided in our lives. Werner chose to fight. Palliative chemotherapy bought time. At the end of the bad news session, he announced to his medical team crowded into the small exam room, “Tomorrow, I’m going skiing.”

Everyday, he skied. He headed for the mountain to work with his coaching staff and young racers. No one knew that underneath his ski clothes, his once strong athletic body weighed a scant 100 pounds.  Remnants of  steely muscle covered his bones, like loose clothing.   Characteristic of Werner, he used his strength to turn his attention to helping others. Courage, tenacity, and faith, kept him standing.

His family is humbled and honored to see his legacy continue to encourage and help others. We are grateful to the families and young racers of the Loon Race Team for organizing the first annual Ski-A-Thon, Carving for a Cure.  

 Fifty percent of the money donated will go to Boston Children’s Hospital in Samantha (Sammi) Burns name. She is now in remission.                                                                                            

Photograph by Stefan Zwahlen – stefanzwahlen6strings@gmail.com

The Sixth Gate – Living Normal the Abnormal

February 14, 2014

    December 2000, January 2001, February 2001 

   Werner began the aggressive chemotherapy protocol against Stage III  esophageal cancer. He received the standard chemotherapy drug, Docetaxel.  When his medical team asked  if he would like to volunteer to become a research patient for an experimental  cancer drug, Werner responded without hesitation, “Let’s just do it.”

How did he manage the time his protocol demanded? How did he carry on with his responsibilities as Alpine Director of Loon Race Team and Holderness School Alpine Ski team coach while ongoing treatments?  One way –  Werner’s way. To his protocol team, he said, ” If you can’t schedule my treatments first thing in the morning, I am not going through with this, because I need to be on the mountain by noon every day.”

Werner’s treatment protocol included chemotherapy twice a week for two months, followed by five days a week for six weeks of radiation mixed with chemotherapy. When the time for the radiation treatments to begin, Werner faced driving an hour one way over mountain roads to arrive at Dartmouth-Hitchcock Medical Center. When family members, friends, and colleagues heard about this schedule, they not only wanted to help preserve Werner’s energy, they wanted to spend time with him. So they joined to become a team of chauffeurs. Once we knew the schedule for Werner’s treatment protocol, a friend or family chose and signed on a particular calendar day to be the driver.

During the six-week daily radiation therapy, a friend or family member walked into our kitchen at 7 o’clock in the morning. They always arrived with a smile. After coffee, hugs, and few laughs, the two travelers left the house for the hour drive to the medical center.

These faithful family members, friends, and colleagues showered us with the love of giving. Their time with Werner preserved my energy for later. Werner did not miss a day on the mountain.

                                      

         

Top Photo: The Big Sky Gate photograph taken by Stefan Zwahlen

Surviving Stage III The Esophageal Cancer Journey

January 28, 2014

 

DSCN5562Surviving Stage III The Esophageal Cancer Journey

     "Do not research this cancer," said my friend.
It was the year 2000, my husband was diagnosed with Adenocarcinoma at the Stomach Junction 
We entered The Fifth Gate-survival of Stage Three Esophageal Cancer

In 2000 online information and resources about esophageal cancer were scarce. What information I did find scared me enough to understand why my friend warned me not to research the diagnosis tagged onto my husband, Werner.  Stage III Esophageal Cancer with a few lymph nodes  involved.

     “One esophageal cancer warrior said, “When I heard the diagnosis, I felt like I had been hit with a baseball bat. When I asked about my chances of surviving this disease and heard the poor outcome, I felt like someone hit me again with the baseball bat.”

     I tried to follow a piece of advice offered to me. Do not look at survival statistics.  All right… I won’t dwell on cancer patients presented as statistics.

That advice was short-lived. Two to five-year survival statistics popped up on my computer screen and stared back at me like dirty smears on my eyeglasses. Enough! I clicked out of the cancer web sites.

 The other piece of advice offered to me, think positive, find the stories of people who were cured. Finding none, I began to feel like a dog digging for a long gone bone. Like the dog, I refused to quit digging. Stunned by the lethal character of this cancer, yet I gave myself a go at positive thinking.

Let Werner’s quiet faith and courage wash over you. Focus on the power of his strengths, physical and athletic. He is aggressive and focused. How else could he have climbed more than 100 routes on the Swiss Alps? Cancer cannot take him down.

He grew up racing downhill on a Swiss Ski Team. As director of Loon Mountain’s successful alpine race team, he possesses the everyday physical endurance to set race courses, support his staff, and coach young racers in all kinds of weather and mountain snow conditions. Cancer cannot take him down.

He lives trusting God. Cancer cannot take him down.

     Two points crept all over my positive thinking drill. Cancer was no respecter of people, and Werner’s advanced stage of cancer.

For the first time in our 30-year marriage, physical vulnerability reached out and touched him. Suddenly it hit me. I would lose him to this cancer. I hated knowing it. Inexpressible terror overwhelmed me. I told no one.  I promised him that I would be brave, but the path I saw was littered with enough ingredients to break my heart. What now?

     Somewhere I read, “Courage is not the absence of fear.”  And C.S. Lewis wrote, “Courage is not simply one of the virtues, but the form of every virtue at the testing point.”

     I thought when God promised to help me honor Werner’s one request, “You must be brave,” He meant I would be immune from despair’s mocking voice. I was wrong.