Category: My Esophageal Cancer Journal

The Esophageal Cancer Journey -View From the Heart of a Spouse.

September 18, 2017

IMG_1079 (3)

To you who are in the fight, to your spouse, your families, and your significant others, I think of you. When the walk seems insurmountable,  I think of you for I also walked in those shoes. 

April 2001.

He stares at me through drugged eyes, yet he looks right through me as if I were invisible. He seems to have disappeared deep inside himself.

I sit beside his bed and read. He rarely speaks only to ask me to fix his pillows. He is irritable with me. I ask myself why.

I’m exhausted and can’t understand it. When Werner tells me the pain is excruciating, I take back my I am exhausted.

The morphine drip flows into his arm. In his hand, he holds the extra morphine painkilling button. He presses it often. He tells me when I touch him, it creates more pain. I ache for him.

If esophageal cancer possessed the capability to write the laws of physical chaos on a body ravaged by months of chemotherapy, radiation therapy, and radical esophagectomy surgery, my husband’s once healthy athletic body is the classic model.

What he tells me says it all.“I am an organized train wreck!

I can’t ignore my rollercoaster of emotions as I watch my husband suffer beyond my comprehension. I am the by-stander. I cannot relieve his pain. I can be by his side, quiet, he knows I am here when he needs something, anything. 

I take time to walk when his nurses come in. Often my path takes me to the hospital chapel. There my tears can fall. I take my emotions to God and raise up my husand in prayer. 

One thing I know. Nothing can separate us from the love of Christ, not this cancer, not even death. Before God I can express my fears and my feelings for Werner’s present suffering without critism. Though my touch brings Werner more pain, I pray for God’s touch to bring him relief.  My time sitting in the chapel to talk with God grounds me. 

The Esophagectomy

August 31, 2017

 Information For a Question Posed

Sometimes the esophagectomy described in cancer sites sounds rather easy … it is not.

Esophageal Cancer Awareness Group Member Posted This Question. Should I ask for an epidural post esophagectomy surgery at the stomach junction?  My answer and other group members answered, “Yes!”

This surgery is also known as the Ivor Lewis Pull-up surgery and is a gastrointestinal and thoracic surgery  performed by a specialist and one who has performed many of these surgeries successfully and with  less than 10% chance of leakage at the anastomosis.

I write only from my husband’s 2001 surgical and post surgical experience, from my viewpoint as a member of his support team. Surely there have been inroads to better this surgical procedure. Although from what I read and what Esophageal Cancer Awareness Association members write there has not been a radical change. The procedure simplified after months of chemotherapy and six weeks of daily radiation therapy, followed by an all things medical rest.

  1. Six-plus hours
  2. First the gastro surgery, a portion of stomach removed, along with the sphincter at the end of the esophagus and top of the stomach. The sphincter is what prevents the food in the stomach from sliding back up into the esophagus. Result of its removal one cannot no longer lie flat.
  3. The second surgery, thoracic. An incision begins under the shoulder-blade and arm, ribs separated, a lung is collapsed in order to reach the upper part of the esophagus to be resected.
  4. The cancerous section is removed. The stomach is then pulled up to meet the remaining piece of esophagus and stapled together. This pull-up also displaces the organs below the stomach.
  5. A part of the stomach now functions as esophagus and stomach.
  6. One of the bad results post surgery is leakage at the stomach/esophagus connection. My husband did not experience any leakage.
  7. I can only say he looked like a tube machine, nose tube, tubes coming out from his side to drain lug fluid, a catheter, IV Tubes, heart monitors, and a feeding tube inserted during the surgery, and an oxygen mask, pulse checker, and a very important IV morphine drip.
  8. My husband’s post surgery self-description, “I am an organized train wreck!”
  9. The MORPHINE DRIP extremely important and needed. When the pain became unbearable he had a button in his hand to push and receive the pain help without having to ask for it, and then wait for someone to deliver it, or tell him you just had pain meds. EXTREMELY IMPORTANT FOR excruciating pain.
  10. In the first days post surgery, he became agitated, uncomfortable, and cross. After a few times I realized he was fighting so hard within to endure and survive he hardly knew what he said.
  11. Our first walk together, he held the handle of a walker as we circumnavigated the surgical suite pod. Our paraphernalia bottles, Iv Stand, Oxygen bottle, tubes connected to everything went with us.
  12. Once on his feet my life long athlete husband aimed to walk a mile around the pod. Slow and with enormous focus and courage, he met his goal to the cheering on of his medical teams.
  13. Ten-days post surgery all tubes and IVs were eliminated one at a time with the exception of the feeding tube.
  14. Home to face more recovery challenges and become our own trial, error and eventually efficient medical team.
  15. That is a story for another day.
  16. Glad to answer questions if it is something we experienced.
  17. If not The Esophageal Cancer Awareness Association is a good resource and an encouraging environment.

 

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.


 

       

 

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

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 SECOND GATE – DENIAL

January 4, 2014

We walked towards the hospital exit doors. We left behind the patient beds, normal days, and life, as we knew it. We pushed open the hospital door, exited and entered the second gate of Werner’s Run, denial.

“Why did you tell her that I have cancer?” Werner sat at the long kitchen table looking at me as if I told a lie.

I had just said good-bye to my mother who telephoned to ask the results of the endoscope. I told her that the endoscope results were malignant.

Incredulous that he asked me such a question, I stood at the end of the kitchen table with my mouth hanging open…angry, stunned, speechless.

He wasn’t finished… “I don’t want my staff, the kids or the club members to know. I can handle this by myself. No need to make a fuss over it.”

Classic Werner, a stoic Swiss. He expects us to go on as usual and pretend that cancer has not entered our home. Am I to keep this a secret? I realize we are both in shock, but he can’t ask me to deny that we are walking down an unknown and frightening path. I am all too aware of his need to keep all things private, emotions, and what he accomplishes, but this confrontational question and request for secrecy is unacceptable.

Holding back tears, I said, “My love, you are going to lose your hair. How will you explain that to your staff and family?”

Without looking up, he sipped his tea. I sat down next to him. We didn’t touch or speak. In that long tortuous silence, I began to realize, when cancer strode across our home’s threshold, it brought with it other baggage containing its own set of psychological, emotional and spiritual rules. I knew if Werner left the table now and walked out the door enclosed in his usual silence, a wedge would develop between us. Shocked, stunned, sad, whatever I felt or he felt, we had to communicate right then or an unhealthy stoic silence would set the standard throughout this fight. I prayed, please don’t leave the table. Cancer without physical treatment will multiply, fester, and finally kill. Denial has the same possibility to kill us.

Smothered in the silence, I waited. Finally, Werner said without looking up, “OK, you can tell your family, but no one else, not yet anyway. Give me some time. I will figure out how and when I tell my staff.”

“I respect that. One thing we cannot do is to hide.”

Relieved, I still tread softly, because, not only is he an emotionally private man, he carries on with whatever he does, without the need to talk about it.

“We need to put everything about this cancer on the table, so that Stefan, Jurg, family or friends won’t be afraid to ask a question, or talk about it with us. I need to talk about it. I can’t bottle it up. You know that people will want to offer help and encouragement. Helping will also be a comfort for family, friends, your staff, and your racers, because they care about you. What happens to you will emotionally affect others. Forcing my silence will build a barrier between you and me, our children, family and friends. How can we handle this challenge if we can’t speak about it?”

He took my hand in his and finally looked at me. “Just give me some time. I know this is hard for you. We’ll be ok.”

He kissed my cheek smudging my tears. I stood up, picked up his cup and put it in the dishwasher. He got up from the table, folded me in his arms, and said, “I love you. We’ll be Ok. I am going out for a bit.”

Tasting my tears, I smiled at him and whispered, “Ok.”

Together, we made it through the cancer’s second gate – denial.

Copyrighted

THIRD GATE – A REQUEST

January 1, 2014

YOU MUST BE BRAVE

December 2000

“You must be brave,” said my beautiful husband.

You must be brave? He must be kidding. The peril we faced suffocated me. Being brave was about as far removed from me as the life we knew and the future slipping from our grasp. Where would I find the means to be brave in the midst of this nightmare?

To stage Werner’s cancer and for subsequent care, we chose the Norris Cotton Cancer Center at Dartmouth Hitchcock Medical Center. The oncologist appointment ended with a more ominous diagnosis than the original diagnosis.

We walked out of the oncologist’s office staggered by the words, stage III adenocarcinoma of the esophagus at the stomach junction, with a few lymph nodes affected. Survival depended on a treatment protocol including months of chemotherapy, six weeks of radiation administered daily five days per week, followed by a massive radical esophagectomy, the likes of which I could not begin to comprehend. I wasn’t brave, I was numb.

Eighteen years ago, Werner and I spent another hospital stay and hours sitting in the grip of nerve-wracking waiting room chairs, while our eight-year-old son, Stefan, an avid skier like his dad, underwent neurosurgery for a brain tumor. Three years later, we repeated the vigil, when Stefan’s neurosurgeon removed a second more complicated brain tumor. Here once again, those nerve -wracking stints sitting in hospital chairs demanded our presence for more waiting and wondering. This time for Werner’s fight.

The long day of doctor consults and tests finally ended. Exhausted, we headed for the exit doors through the busy hospital rotunda. Head down, I didn’t see the exit doors ahead. I saw flashbacks of Stefan’s ordeal merge with the battle ahead for Werner. Terrified and discouraged, my emotions slid down like the worn seat of the hospital waiting room chairs. Not wanting Werner to see me disintegrate, I lagged behind fighting to harness my crumbling emotions before I caught up with him. I hurried on, once I thought my external expression masked my inner turmoil. It didn’t.

Werner wove around the steady stream of people exiting  the big glass doors and stepped outside to the portico sidewalk. The high ceiling portico hummed with the noise of cars idling along the curb to pick-up and drop-off patients. When I caught up with him, he walked a few steps away from the big doors, stopped abruptly in the middle of the people traffic, and blocked my way. He turned and faced me. Jolted by his determined expression and his uncharacteristic public emotion, I didn’t know his intent, but he had my utmost attention. He placed a hand on each of my shoulders. His eyes bore into me along with four words, “You must be brave.” Time stopped. Written in his eyes I saw his plea. Promise me you will be brave. I am forced to attempt the most difficult and life threatening climb of my life. You and I are roped together. If you let go of the rope, I cannot fight. I will suffer enough, but my suffering will be unendurable if I must watch you suffer too.

People moved past us in slow motion. Engine noise from the idling cars ground down to the sound of an old phonograph record played at the wrong speed. Encapsulated in that time frozen moment, he met the third challenge in his race for life; me. As abrupt as he stopped me, he dropped his hands from my shoulders, turned and walked down the sidewalk.

Did I respond to his request? I must have said, “Yes, I will be brave.” Of course I said yes. I don’t know if I said yes, or if I said anything at all. But I knew he had yanked me up and out  of  suffocating in an avalanche of fear.  His plea to me was a powerful and pivotal moment that defined the  way in which he wanted to fight this cancer- with courage. When I caught up with him, we did not speak. I just felt his fingers wrap into mine.  

An earlier version published 2006 in Guideposts Books, Copyrighted material

THE FOURTH GATE- How I found

  

Read More