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

September 18, 2017

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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.

 

ESOPHAGEAL CANCER WHY I RESEARCHED

January 30, 2017

Why and what I learned from researching esophageal cancer.

I never heard of cancer of the esophagus until the year 2000 when my fifty-six-year-old husband received a STAGE III ADENOCARCINOMA AT THE STOMACH JUNCTION diagnosis.

At the time, a friend whose husband died from this cancer warned me, “Do not research this cancer.”

I ignored her warning for two reasons. 1. I couldn’t go into this fight blind. 2. I needed all the information available to best support, my husband.

Did I wish I hadn’t researched esophageal cancer? Yes! Did I know I had to study this cancer? Yes

What I found jolted me to the core. We had entered the fight of our lives. Even then I knew the chances of losing my husband to this cancer weighed heavy on the high side.

Did I share with my husband what I discovered? NO! WHY?

My husband was a life-long athlete, mountain climber, and alpine racing coach. His calm no quitting courage, positive approach to challenges, underpinned by his faith were nurtured and rooted in the disciplines of an athlete.

As devastated by what I read about the poor long term survival statistics of this cancer, I understood that stepping on hope had no place in the fight for his life.

IN 2000, ESOPHAGEAL CANCER WAS AMONG THE FASTEST GROWING CANCERS IN THE UNITED STATES AND REMAINED SO IN 2020. IT AFFECTS OVER 18,000 PEOPLE PER YEAR. ALTHOUGH IT IS A DEADLY CANCER, I READ IT RECEIVES 2% OF RESEARCH FUNDING GIVEN TO THE TOP THREE FUNDED CANCERS.

Thankfully, in recent years, cancer foundations recognized the need to study this disease and collaborations in research are ongoing between doctors studying the genomic side to understanding esophageal cancer, and the doctors identifying immunotherapy targets, and new clinical trials against esophageal cancer. Through studies related to the trial help in better understanding of why some EC patients respond positively to immunotherapy and some patients do not respond well.

In the time frame between 2000 and 2003 the genomic factor and immunotherapeutic information had not taken place.

I can only speak about the esophageal cancer journey my husband and I shared. While many of the advances in treating EC were not known during my husband’s fight, he signed on to volunteer to take an experimental drug that is now approved and used in EC treatments.

Yes, I ignored the do not research this cancer warning.No, I did not like what I read. In fact, I hated it, it horrified me. But it made my resolve stronger to support Werner with the courage he asked of me. Once we established how he wanted to handle managing his cancer and what I would take on, we became a team.

What I handled

  • The medical insurance and its challenges.
  • Using the resources of a care manager to have a human voice to bring any challenges to the table. And there were some.
  • Scheduling appointments and doing pharmacy runs.
  • Scheduling the family and friends who volunteered to be Werner’s early morning chauffeur for the two and half hour six-week daily round trip to the medical center for radiation treatments. All this allowed conserving Werner’s energy. After returning from his treatments, he went back out on the mountain to work with his alpine racing staff.
  • Nutrition – I followed the nutritionist’s guidelines and prepared recipes to boost protein and calories.
  • In effect besides being Werner’s wife, lover, friend, I became cook, bill payer, sometimes at home nurse with guidance from Werner’s medical team, household manager, keeping family members here and in Switzerland up to date, listening, and anything else surrounding the logistics of navigating cancer.

Why did I handle the long to do list?

Werner needed every ounce of energy to combat the assaults of cancer and the treatment side effects. Lifting the to do list burden off his shoulders supported his ability to be out on the mountain to do the work he loved.



Check out the Website ESOPHAGEAL CANCER AWARENESS ASSOCIATION THERE YOU WILL FIND OTHER CANCER WARRIORS AND THE CAREGIVERS WHO SUPPORT EACH OTHER WITH QUESTIONS, RESOURCES AND ENCOURAGEMENT.

Esophageal Cancer New Study

January 26, 2017

Cancer New Study

I read that esophageal cancer is an increasingly common disease and represents 1 percent of new cancers diagnosed in the United States. Though it may be common, but an easy to treat cancer it is not. What has not changed dramatically since 2000, is its survivability. Esophageal cancer articles I read in 2000 seem to contain the same outcome in 2017. Within five years of an esophageal cancer diagnosis, four out of five patients do not survive. While new cases of esophageal cancer are among the fastest growing cancers, treatments given today are similar to treatments offered in 2000 and often have the same failure to help results.

Before my husband’s diagnosis, I had never heard of cancer of the esophagus. I know from experience the uphill battle esophageal cancer demands are not for lack of outstanding oncologists, gastrointestinal and thoracic surgeons, and their comprehensive teams. Simply said, this cancer is the beast.

But hope lies in physicians, and scientist’s dedication to understanding esophageal cancer’s molecular character thereby raising new possibilities discover new treatments to give folks afflicted with esophageal cancer a better and longer life.

THE SIXTH GATE - LIVING NORMAL THE ABNORMAL

Next Post: What I learned from The Cancer Genome Atlas and why that matters for hope on the horizon.

                                                                                                                                                                  Photo Credit: Stefan Zwahlen

 

Zwahlen Memorial Not Just A Race – Today at Loon Mountain

December 31, 2016

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 Zwahlen Memorial Not Just A Race

Werner Zwahlen believed that success is not only measured by results and talent; it is also measured by an individual’s choice to face  one’s difficult challenges with courage and tenacity. Werner mentored and inspired several generations of skiers to develop their strengths and achieve goals on and off the race course they never thought possible. This Giant Slalom race honors Werner as young racers test their mettle on Upper Rum Runner and Coolidge.

THIS IS NOT JUST ABOUT A RACE – it is about the courage and spirit Werner Zwahlen lived on and off the race course. This legacy, I am told, continues to inspire and impact the lives of his coaches and the adult lives the skiers who trained his direction.

Esophageal Cancer Then and Now

March 24, 2016

ESOPHAGEAL CANCER  THEN AND NOW                                                                                                               THEN THE YEAR 2000  Only basic information available Hard to find meanings of staging Scarce esophageal cancer awareness Difficult to treat Survival Statistics dismal Generally advanced stage at diagnosis Few support groups available –  2 Wonderful sites […]

Read More "Esophageal Cancer Then and Now"

April Is Esophageal Cancer Awareness Month – If You Experience Difficulty Swallowing, Run Don’t Walk to Your Doctor, Please!

April 14, 2015

 

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.

Discussing Mortality- It Matters

March 9, 2015

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.

 

Being Mortal

March 9, 2015

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.

Wendy Karasin - Musings of a Boomer

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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