Category: My Esophageal Cancer Journal

Emerging from the Post-Esophagectomy Abyss

Journal May, 2001, Several days post-surgery.

The nursing staff challenged Werner to walk ten times around the pod in the surgical unit. This was the amount of steps needed to walk a mile.

Of course Werner, the athlete rising from the abyss, accepted the challenge.

Once he committed to meet this goal nothing stopped him; not excruciating pain, not difficulty breathing, and not the weakness that prevented him from standing without his hands on the walker.

Instead of wearing hiking boots and a back pack, he became a mobile life support, oxygen carrying, container holding, walker hiking machine. Multiple tubes protruding from his body anchored him to the IV poll. With me as the poles helmsman, we shuffled off.

After a few days and several completed tours later, I saw normal steps creep into Werner’s  journey. Now each time we rounded the corner to the nursing station, more doctors and nurses waited and joined his cheering squad.

Often his surgeon visited to check Werner’s progress, and sometimes just to chat. One day he visited and asked if Werner would be willing to visit one of his surgical patients experiencing extreme difficulties surviving the post surgery.

Later in the day, Werner’s nurses arrived, gathered all the paraphernalia needed on the walker for Werner to travel to the patient’s room. Werner, nurses, IV pole, walker left on their mission in hopes Werner’s visit might encourage the patient to continue to fight. I did not ask the outcome of that visit. It was not mine to know.

What I knew…

Werner, in typical Werner character, said nothing as he stepped away from his distress and suffering to uplift another patient’s in his distress.

For esophageal cancer warriors, their spouses, families, and significant others. When the walk seems insurmountable,  I think of you.

What I learned as I walked with my husband during the post-surgery in-hospital days.

Journal, April 2001.

He stares at me through big round 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, until he tells me the pain is excruciating. He has  a morphine drip, along with a button held in his hand to press and receive rescue pain killing morphine whenever he needs it. 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 this radical surgery, my husband’s strong athletic body, could be used as its classic model.

What he tells me says it all.

“I am an organized train wreck!

Everyday was a battlefield… we did not choose the place where we had to fight…but God was there too… He did not promise exception from trouble, but He did promise to be in it with us.

 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.

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.