Resources
Resources for Navigating the Cancer Journey
Find help, information, and support for navigating the cancer road with your husband, including palliative care, research, and ways to strengthen your marriage through the journey.
Palliative Care: A Priceless Gift
My interest in and expertise about palliative care began in the real world the day, January 28, 2003, my husband Werner and I listened to the words no cancer patient wants to hear: “We are sorry to tell you that the results of your PET scans are in, and the results are not good. Your cancer is back, and there is no cure.”
Dr. Ira Byock, the leading authority on palliative care, didn’t send us home to go into hospice, which at that time would have stopped all medical treatments for only comfort care. If hospice were the only option for a terminal cancer diagnosis, Werner and I would have missed a six-month gift of time. Dr. Byock immediately asked Werner, “What are your goals? Werner’s goals were big. His medical care for his once strong athlete’s body, debilitated by cancer’s escalating assaults, presented challenges to his medical team. Challenges they wholeheartedly accepted.
This question and Werner’s answers were simple, to the point, and profound. reframed everything. Devastated but not hopeless, we left the little exam room with a Palliative Plan for living.
- Goal one. March 2003, finish the racing season for his team.
- Goal two. April2003, Travel home to Switzerland
- Goal three, June 14, 2003, celebrate our son’s wedding
All Goals Met Because Of – his medical team’s dedication to a comprehensive medical plan, compassion and support, because of Werner’s never quitting courage, and because God walked in the fire with us.
Before leaving the exam room, we received hugs, words of encouragement, and a palliative chemotherapy order to keep the cancer at bay, morphine tablets, and a bottle of liquid rescue for breakthrough pain. We left the room, and the door closed behind us. Werner abruptly stopped, turned back to the door, pushed it partway open, stepped halfway in, and announced to his suddenly silent, staring medical team. “I am going skiing tomorrow.” He turned and walked away. The door slowly closed byitself.
Palliative care is not about giving up. It’s about living fully, even when terminal cancer is the reality. The comprehensive treatments and methods focus on your challenges, needs, and quality of life to accomplish your goals. For Werner and me, palliative care gave us the gift of time, pain and symptom management, palliative chemotherapy to keep cancer at bay, and all the support we needed to help him accomplish his spoken goals.,
I encourage you to seek a Palliative Care Team
The comprehensive treatments and methods focus on your challenges, needs, and quality of life to accomplish your goals.
Research and Information
When first diagnosed with Stage III esophageal cancer, a friend whose husband had recently died from the same cancer warned me: “Do not investigate this cancer.” However, being a researcher, I needed to know what to expect, how this cancer progresses, basically everything available, which wasn’t a lot in the year 2000.
To my horror, I understood the why of her warning. Every site I entered showed a five-year or lower survival rate. I pushed on, looking for a report that showed a better prognosis. But it was like a dog digging for a long-gone bone. I knew I would lose him. Oppression set in, and nightmares followed.
I felt I had betrayed my husband’s fight to survive this cancer. I told no one except my sister, my confidant. I prayed about relief from despair and focused on researching treatments that were available. I began collecting my research of helps and resources in a three-ring binder.
Finding the Right Surgeon
If Werner proved to be a surgical candidate, I focused on researching for the statistical best success gastro-thoracic surgeon. My husband’s cancer, adenocarcinoma at the stomach junction, would involve two surgeries—thoracic and gastro—to remove the cancerous piece.
My criteria: how many Ivor Lewis surgeries completed without losing a patient, no infections, and no leakage at the anastomosis. Post-surgery, the surgeon we chose often visited Werner just to chat with him or to ask him if he would visit a nervous patient as a morale booster. Research paid off.
After the ten-day routine post-surgery hospital recovery, Werner was discharged to home for a tough recovery, and I learned to be an excellent recovery nurse.
Tips For Choosing A Surgeon
Once you receive the news that you are a candidate for surgery, research the surgeon’s statistics. Why? The Ivor Lewis pull-up surgery needs one surgeon who performs gastric and thoracic surgery. First I didn’t want to look at, or hear about this surgery, until knowing everything gave my husband the best survival result. I researched the success statistics of more than ten surgeons some at the same hospital, some at different hospitals. My Questions and criteria. How many Ivor Lewis Pull Up surgeries has the surgeon performed? It had to no fewer then twenty, thirty better, maybe more. The surgeon’s patients will not have experiences any anastomosis leakage followed by infection. Why that criteria? How many patients were lost on the table or died post-op?
I needed to know because this surgery is a massive six-hours and a critical physical invasion. Gastric surgery would remove part of my husbands cancerous stomach, next thoracic surgery through the back and side for the removal of the cancerous part of the esophagus. Once the cancer is removed, the stomach is pulled up and sewn to the clean esophagus. Where the two meet and sewn together is called anastomosis. Ignoring my cringe thoughts paid off when we met my husband’s surgeon with a stellar history of successful surgeries. Don’t be afraid to ask lots of questions. If you feel intimidated to bring up concerns, write all of them down, take them with you and read them. It puts in charge of your words and the consult. Great doctors love the questions. Right away it’s a team builder.
Cancer and Marriage
My third research came about when I discovered how hard cancer of a spouse is on the marriage, to the point of divorce. The stunning statistic: cancer is hard on marriages. The statistics showed that not all marriages showed men abandoning their wives, especially wives who have breast cancer.
While other marriages grew stronger and the bond sustained throughout the cancer journey, some marriages held together, their bond growing stronger. Why do husbands leave? They leave because they become overwhelmed to meet the home demands, care of children, meet medical schedules, be cook, nurse, and do everything their spouse did pre-cancer.
Navigating the Cancer Road Together
I listed ways to help us navigate this cancer road. Find common ground to work as a team without cloning each other. Communication: how to listen, when to speak up, and sometimes in difficult moments, a silent touch can be a comfort.
Journeying with a husband on the cancer highway is not easy. It’s living normal in the abnormal. It’s gritty moments of triumph or tears. It’s joy colliding with agony, my emotions, fears. It’s why I kept a journal to unburden on God and not my husband, who was using all his strength and energy to fight cancer.
I am my own case study with real-world expertise and examples to show how and who we listened to fight cancer together as a team. Our marriage grew stronger, the bond of love carried us, and we lived the marriage vows we took when we were young, when sickness and death had nothing to do with us.
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