Tag: Faith

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. 

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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Who I Am and Why I Write

July 31, 2014

  Who Am I

Artist, Pianist, Teacher, Writer, Child of God

Why I Write

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

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

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

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

I write because of who protected me from despair.

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

I write because I must.

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

CANCER’S FIRST ASSAULT

January 7, 2014

 

IN NOVEMBER 2000, WERNER, A LIFELONG ATHLETE AND DIRECTOR OF A NH ALPINE RACE TEAM ENTERED A DIFFERENT RACE.

This race did not begin on the white slope of a mountain. It started on the white sheets of a hospital bed.

THE DIAGNOSIS,

“YOU HAVE ADVANCED ESOPHAGEAL CANCER.”

WERNER’S RESPONSE, “BUMMER.”

SILENCE HUNG BETWEEN DIAGNOSIS AND RESPONSE.

NO ONE SPOKE. WHO COULD?

THE DOCTOR SPOKE AGAIN, BUT WERNER SEEMED NOT TO HEAR.

WERNER SPOKE. ” WHY ME? WHY DID THIS HAPPEN TO ME?”

NO ONE ANSWERED. WHO COULD?

WERNER SPOKE AGAIN TO SOMEONE NOT TO US.

“WAIT, I TAKE THAT BACK. I CAN’T BELIEVE I JUST SAID THAT.”

FACED WITH CANCER’S FIRST ASSAULT, WERNER ENTERED HIS RACE FOR LIFE AND WON THE FIRST GATE – SELF-PITY.

Copyrighted material

 

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

  

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