Category: My Esophageal Cancer Journal

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.


 

       

 

Follow On My Heels – Part III- Wrestling With Fear

March 26, 2014

January 29, 2003

For years and before cancer entered our life occasional nightmares woke me. Werner always disappeared or moved to Switzerland without me. On January 29, 2003, the morning after Werner received the terminal cancer diagnosis; I woke to the reality that  I am now living that nightmare.

I turned in and looked at my husband still asleep, his back to me, yet warm and close. I slid my arm around his chest and pulled myself into the curve of his back. I felt his hand cover my hand. “Hi love,” he said.

In my mind, I heard, “Remember his voice.” I held him tighter. It was the end of January 2003 and life as we knew it.

One morning as I sat alone at our dining room table and too shocked to cry, I knew one thing. If I did not wrestle with how to stand with Werner, how to face terminal cancer and the horror of a death sentence in the faith I professed, I would not only be unable to stand, and I would cause irreparable harm to my husband and my children.

Knowing God did not intend to heal Werner here, I stood on the front line to do battle with the enormity of losing my husband. No one on earth possessed the power to help me face this road marked, your new reality, living nightmare, no turning back, a dead-end.

I looked out the window at the fresh snow covering the gardens, the orchard, and the mountains surrounding our home. I looked up at the deep blue sky morning and hated the pristine scene I loved. Nothing consoled me. Courage left me. What will happen to my commitment to honor Werner’s request, “You must be brave,” when all the never again-s came rushing at me with the force of a mountain river’s ice break pushing boulders, uprooting trees, and annihilating everything in its path.

Desperate and beyond coping, I cried out to God. Help me grab ahold of something to keep me standing for my husband.

The answer came immediately from words I heard coming from the kitchen radio. “If you stay so close to Christ, He will not allow you to fall too far. He will go before you and be your rear guard.”

The painful fresh snow scene outside my window vanished replaced by the memory of hiking with Werner in mid-October that gave life and meaning to the words I heard on the radio.

Facing Terminal Cancer Diagnosis With a Loved One. How We Coped.

March 19, 2014

February 2003 – Follow On My Heels Part II

I gripped the steering wheel, pressed my foot down hard on the accelerator, and sped toward home, while the words terminal cancer ground into my heart and fused into my brain.

I held  my emotions in check until we walked into our kitchen where our youngest son met us and said, “How did it go?”  I opened my mouth to speak, but a gasp so violent erupted from within me, I fled to the mudroom and buried my face among the coats to muffle my sobs.

A moment later, I felt the touch of gentle hands reaching for me. I turned and looked at my husband and son. There we stood wrapped in each other’s arms. Tears were our words. Love our binding strength.

Our emotions spent, I said, “Come on, let’s go to the kitchen, open a bottle of our best wine, and toast to the life we have together.”

When we raised our glasses, Werner said,  “I’m so sorry, I thought I had more time to spend with you. I didn’t want to leave you so soon.”

“Please, you must not apologize to us ever. You did not choose cancer. It forced itself on you. So let’s toast to us, our love and each other.”

And so we did!

                                DSCN1235                             

 

Part III – Follow On My Heels

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.”

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

Spiritual Warfare/The Esophageal Cancer Journey

January 31, 2014

DSCN5562

The Fifth Gate II – The Enemy, The Mocking Voice

Nightmares and Esophageal Cancer’s Low Survival History.

You kiss a dead man the mocking voice taunted.

It was late night.  I said to my husband, “You don’t mind if I read a while longer?”

“No love, I don’t mind, but you will fall asleep like usual.” I smiled at him and put down my book.

He knew me well.

He leaned toward me. We embraced. Our lips touched, a soft and loving good night kiss. From out of the depths of my mind a voice struck me with the force of a rattlesnake sinking its venomous words into our good night ritual.

You kiss a dead man.

Trapped inside this waking nightmare, I felt the enormity of the words I read while researching esophageal cancer. There is a 20-percent chance to survive esophageal cancer for five years if discovered early. The survival odds diminished for my husband’s Stage III esophageal cancer diagnosis. No matter how many Web sites I visited to boost my hopes all came up short on the survival side.

It was just the beginning of my husband’s fight to survive and I knew I would lose him. I hit the close key on my computer. No this can’t happen to us. I stared out the window at November leafless trees and mowed field. Tears blurred the landscape. I told no one about what all the reports said. But one mocking voice knew.

I hid the poisonous words deep inside my head while every cell beneath my skin recoiled, except in my heart were my love for him lingered in his embrace and kiss.

I said nothing to him about the attack of the mocking voice.

For awhile I lay awake.  Thoughts swirled around in my head… I  can’t lose him. statistics say otherwise. I hated knowing,  and by knowing, I felt like I betrayed my husband.

 A few weeks into our cancer journey , my husband, a tough private person, made one request at a time the fight we faced overwhelmed me.  “You must be brave!”

Although I was anything  but brave, I wrestled with how to best support my husband. When I chose to rely on God to help me honor  his request, I acquired an enemy. I named the enemy the mocking voice and unaware the this enemy was not finished with me.

 My nightmares began.

Spiritual Warfare Trusting God in the Esophageal Cancer Journey

January 30, 2014

DSCN5562

 HE TRAINED MY COURAGE

Perhaps the shock of Werner’s diagnosis followed by the lethal prognosis of Stage III esophageal cancer with lymph nodes involved, traumatized me more than I realized. I wondered if horrific thoughts also taunted other people, particularly caregivers, in similar circumstances, and did they endure the taunts in silence for fear of ridicule or admonishment. One thing I knew, I had an enemy. It wasted little time attempting to discredit my trust in God’s promise to sustain my courage by infecting me with an emotional cancer ripe with despair.

    In his preface to The Screwtape Letters, C.S. Lewis wrote, “There are two equals and opposite errors into which I can fall about the adversary’s minions. One is to disbelieve in their existence. The other is to believe and feel an excessive and unhealthy interest in them.”

God knew the intensity of the battle we faced on the front-line of cancer. Through these events, He began my training.                    

The information I read about esophageal cancer left me realizing that I would lose my husband to this disease. Appalled, I felt that in my mind I had betrayed Werner’s hope to beat this cancer. My enemy, the mocking voice, attacked my troubled emotions on a simple expression of love – a good night kiss.

  “You kiss a dead man,” the mocking voice taunted when our lips met in a goodnight kiss. Under my skin, I recoiled from those words and flung out a prayer to God, “please protect this viper’s attack from Werner.” I returned his kiss and said, “Good night my love,” as if nothing happened. I slept, but I did not rest. The nightmare began.

*

Werner and I had a funny little front door ritual. He played along to amuse me. It went like this.

Pitch black nights surrounded our mountain chalet located far off the road on six isolated acres. On the nights Werner had meetings and returned home without his house key, I greeted him at the locked door, “Is that you, Werner?”

He’d laugh, “Yes love, it’s me,” and sometimes he added something funny. Only then would I open the door.

However this night, in a dream about the funny door ritual, it turned ugly.

Sleeping alone in the house, a middle of the night knock on the front door woke me. I left my bed, walked through the dark house to the front door. I placed my hand around the door knob, “Is that you, Werner?” Silence. Yet I felt the cold of something sinister waiting in the pitch black silence on the other side of the door. Dread cupped my hold around the doorknob. With more boldness than I felt, I called louder, “Is that you Werner?’

       “No,” came the dead cold reply.

        My hand flew off the doorknob, and I cried out in the night.

         A moment later I heard, “Wake-up, love, wake-up, you are having a bed dream.”

    The next morning, I woke-up weighted down under a depression that poisoned my thoughts throughout the day. If this was what oppression felt like,I was in it.

*

INTERVENTION

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.

 

The Fifth Gate-My Introduction to Esophageal Cancer

January 25, 2014

 

DECEMBER 2000 – My Introduction to Esophageal Cancer

My introduction to esophageal cancer came from a chance meeting with a woman I had not seen in twenty years and whose husband died from this disease.

I had never heard of esophageal cancer. As she unfolded her story, I felt my unease unfolding, as if I had entered a dark forest and I couldn’t shake the fear of something following me. DSCN3780

After listening to her account, I gathered my courage and asked her what made her husband seek medical attention. When she identified her husband’s swallowing difficulties as the major  he sought help, a full-blown fear turned my stomach. For several months I was all too familiar with watching my husband experience difficulties swallowing. I have no doubt our meeting saved my husband’s life.

In December, she telephoned me. It was then that I told her about Werner’s advanced esophageal cancer diagnosis. She said, when I told you about my husband I sensed something  was going on within you based on the questions you began asking. She expressed her sadness about Werner’s diagnosis and ended our telephone conversation  with, “Please don’t research this cancer.” I didn’t heed her warning.

For me to be a member of Werner’s support team, I needed every tool available to help me help him. Pursuing a forbidden curiosity was not my motive to research esophageal cancer. Yet because of my friend’s warning, I felt a bit like I was about to pick forbidden fruit.

I needed to know how this cancer behaved, what treatment options were available, and how those treatments affected the prognosis. Ignorance would not make me a good team member. I hit search on my computer and entered the cancer web sites, better known to me as the gate-keeper treatment options and prognosis places. I visited too many cancer sites to count and discovered more about adenocarcinoma at the stomach junction than I wanted to know.

Before I post the rest of The Fifth Gate, keep in mind, my experience with the online esophageal cancer information was from the year 2000. During the fourteen years since our experience, new research into esophageal cancer has helped in treating this cancer. I add this so as not to discourage hope to the people now in treatment, their spouses, caregivers and families.