APRIL IS ESOPHAGEAL CANCER AWARENESS MONTH
Since 2000 treatment and longer survival from esophageal cancer has improved significantly. Squamous cell and adenocarcinoma are the two groups of esophageal cancer.
In 2000, when my husband received his diagnosis (from acid re-flux disease) of Stage III adenocarcinoma at stomach junction (GE Junction), which included cancer visible inches into his stomach (called cardia), also known as distal junction, information about this cancer was minimal and optimistic survival time was not very optimistic.
By 2004, studies showed some advancement in epidemiology, etiology,diagnosis, staging, prevention and treatment, and possibilities for surgery. A stage IV in 2000 pretty much meant surgery not an option. Still in 2004 long-term prognosis remained somewhat poor.
In 2013, an article in the World Journal of Gastroenterology esophageal cancer was one of the least studied and deadliest cancers around the world.
Adenocarcinoma esophageal cancer sadly has earned a ranking of six in mortality among all the cancers. and its incidences have risen sharply. However, the good news is that research into the causes and risks of this lethal cancer are also on the rise.
In 2015, The American Cancer Society, estimates about 16,980 new esophageal cancer cases will be diagnosed.( Men, 13,570 – Women, 3,410)
Now the survival is 20% of patients at diagnosis surviving five years and beyond. While in 2000, a whooping 5% of patients survived at least 5 years after diagnosis.
Of course, catch it early and the survival rate and perhaps even remission rise sharply.
Risk factors for esophageal adenocarcinoma are: Acid Re-flux, (GERD) Barrett’s Esophagus, smoking, and obesity.
Although in an article, The Epidemiology of Esophageal Cancer, written in The World Journal of Gastroenterology, said, “no particular risk factor is responsible for the rising incidence of esophageal adenocarcinoma.”
In our family, my husband’s uncle died from esophageal cancer. Our youngest son, born with an acid re-flux issue, now in his thirties, he schedules medical monitoring, and watches his diet.
What preventive daily home measures can you take?
- Quit Smoking
- Eat Vegetables, raw vegetables are more protective than cooked vegetables.
- Eat fruit
- In both fruits and raw vegetables, vitamin E, C and Carotene are protective.
- All that to say this… research to understand what foods, smoke and other ingested materials, affect the health or deteriorate the lining of the esophagus.
Again, hear me yelling, if you are having trouble swallowing get help immediately. Difficulty swallowing is what sent us running to the doctor for help.
Perhaps if we realized the swallowing issue was not just indigestion, my husband and I may have had a chance for more years together.
My Case for Palliative Care
Forced to face mortality is to walked through the fires of sorrow. It is not the stage on which anyone of us chooses to play. So joy in life is, so sorrow is too.
When the vigil begins, is the being mortal conversation open to include family and the patient facing imminent death?
How important is it for the patient’s medical team to visit daily and continue their involvement?
How important is it to not isolate the dying patient?
What becomes important when being mortal is one’s last reality?
Is there hope beyond hopelessness?
Is there anything in the natural world that possesses the power to reverse the last breath, or is the natural world indifferent to one’s finite being?
Wendy Karasin, who blogs, Musings of a Boomer, read a book written by a doctor, titled, Being Mortal. After she read the book, she asked this question.
“Where do you stand on this issue?” I agree with Karasin’s observation that death is a tough subject to discuss, and many might think it too depressing to discuss. In my opinion, however painful or frightening, the discussion matters a great deal.
I posted her article, Being Mortal, here on my blog. I wonder what others think about, “Is death too upsetting to consider?”
Today, there are new programs available to open the discussion and address this issue of “being mortal”. In the last ten years, doctors who felt the need and importance to care for patients and address end of life matters, now have the opportunity to pursue a specialty in palliative care.Their dedication,compassion, and comprehensive care for patients who have come to the end of the medical-help road, has contributed enormous support for their terminal patients.
Equally important, palliative care programs offer guidance to those families who choose to become physically and emotionally involved in their loved one’s end care.
From my experience this creates a natural and comforting environment where all involved can talk together about end of life concerns, express emotions, and deal with spiritual matters, if faith has been a part of their lives.
Because I believe each person and their families must navigate mortality on their own terms, I only speak from my experience and belief.
My Case for Palliative Care
Discussing Mortality – Does it Matter?
To answer the question posed in Discussing Mortality
“Does anybody matter enough to you to open the door and find out?”
For me, Yes, and many times, yes. My late husband and I walked that end of life road where the gift of life was as precious as our last walk together.
I just picked up a book titled Being Mortal, in which the author, a doctor, considers the experience of mortality. He explains that he was taught in medical school how to keep people alive, but not how to let them die, or even have that discussion, if there was no longer anything he could do to make them better.
He says “our ideas about how to deal with finitude” (his word, not mine) are inadequate, if not lacking totally. He talks about doctors having conversations about the risks of operations—which can include severe complications such as paralysis and death—with greater ease than they can discuss why not having the surgery is the preferable decision. Even when they agree.
Death is a tough one. No matter our belief system. So is getting older and frailer, and losing pieces of our dignity. One would think, I would think, there is no better…
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Recently, I had the privilege to attend the wedding of two very special friends. Printed on the wedding ceremony program was a quote from Timothy Keller. The quote speaks for itself.
“When over the years someone has seen you at your worst, and knows you with all your strengths and flaws, yet commits himself or herself to you wholly, it is a consummate experience. To be loved but not known is comforting but superficial. To be known but not loved is our greatest fear. But to be fully known and truly loved is, well, a lot like being loved by God. It is what we need more than anything, It liberates us from pretense, humbles us out of our self-righteousness, and fortifies us for any difficulty life can throw at us.”
FULLY KNOWN AND TRULY LOVED
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!
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.
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.”
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
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.