My husband, Gene, had been having severe bouts of hiccups whenever he ate. He finally had an endoscopy and was diagnosed with esophageal cancer in April 2003. We thought this couldn’t happen to us because no one in Gene’s family had ever had cancer.
Our first round of treatment included five weeks of radiation and chemotherapy. Halfway into our ordeal, Gene began dropping weight; it was difficult for him to eat and he just didn’t have an appetite. I cooked myself into oblivion. Nothing worked; food was not appealing to Gene. I felt I had failed my loved one. He wasn’t eating though he knew he had to eat for energy. We tried Ensure, Glucerna and Boost to gain weight, all to no avail. Finally, we discovered Frusion from Dannon, a liquid yogurt he could tolerate and drink without too much fuss. Mission accomplished. Whew!
As we continued on this path, there were numerous trips to doctors’ offices, and there were trips to the emergency room due to dehydration, low blood count and fatigue. At times I didn’t know if I would make it to the next day. Gene’s surgery was in July of 2003 and was a huge success. He made it through the 9 ½ hour ordeal with flying colors, but his caregiver was running on adrenaline. Gene was released after 2 ½ weeks from the hospital to come home. He was given a clean bill of health. He was cancer-FREE!!
By November of 2003 Gene was eating on his own. He had lost 30 pounds and wasn’t putting any of it back on. (It is amazing how those fat calories found me instead of him!) Nothing tasted good but he continued to have a great attitude and tried different concoctions to appease me.
Digestive problems began again to plague Gene in early 2004. We sought consultation to find this was “normal” and not to worry. Finally in April 2004 a CAT scan and an MRI were scheduled to see what was happening. They discovered the cancer had returned with a vengeance. Gene had lesions in his liver, behind his stomach, on the adrenal gland and two spots on the frontal lobe of his brain. How could this happen? We had received a clean bill of health in October 2003! We were devastated. Our second round of radiation and chemotherapy began. But this time, I knew I needed help. I did not have the energy or wherewithal to deal with this alone.
I called Baylor University Medical Center at Dallas to get the schedule for their support group for caregivers only to learn Baylor did not offer such a program. I went to several Baylor staffers with topics in hand asking for assistance. The more information I could garner, the better the caregiver and advocate I could be for Gene. Baylor listened! The support group for family and friends of cancer patients began in October 2004. This group became my therapy; and it carried me through some very tough times.
The more involved I became with Gene’s medical team, the better caregiver AND advocate I became. One of life’s nuggets I learned was to listen to my intuition: 99% of the time, I was right. I knew this patient better than the doctor of record. I had to be aggressive and recommend changes especially when the medicine was not working properly or when fatigue became unbearable. This was a hard lesson. I do not have a medical background…merely a degree in the school of hard knocks.
Unfortunately, my precious Gene lost his courageous battle with cancer November 2004. Yet, his spirit continues to shine because the support group for family and friends is paramount. My promise to Gene is to continue with the support group because it is so vital for the caregiver’s well being. I was just like you when our journey began in April 2003—scared of what was happening and afraid of the unknown. However, I have gained strength while helping others cope with this roller coaster ride. We had angels guiding us and helping us cope throughout this journey — the friendly valet guys, the upbeat receptionists, our medical team, the compassionate nurses and even the mail room guys — all greeted us warmly and made us an extended family member of Baylor.