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.