Afraid to Talk About Dying

Elaine Williams copyright 2008

When my husband was diagnosed with esophagus cancer, we never talked about him dying, except in the very beginning. I think we were afraid to voice the worst scenario we could think of, him not making it through this disease. He refused to consider taking the traditional route in medicine, which was chemotherapy and radiation treatment. He told me early in his illness he was certain that the chemotherapy would kill him right away. When such a diagnosis is delivered, you begin to carry around with you a heaviness inside. When someone you care about is terminally ill, it dominates your thoughts and every waking moment. Your mind races over the different treatments and the newest drug trials, in the slim hope that things aren’t as bleak as they seem.

When the doctors told him he had this cancer, which essentially prevented him from eating, he wanted them to operate and take out the largest tumor at the junction of the stomach and esophagus. His doctor said it would be a major operation, where the ribs would have to be cracked open, and not one that he had the ability to perform. After more extensive testing was done, the doctors decided not to operate because they felt there was a good chance the cancer had already spread to the lymph nodes in the esophagus region. I didn’t know it then, but I guess I should have -- they didn’t want to operate because they felt it was a lost cause.

We didn’t feel we should give up -- we just knew that each human life is a cause worth fighting for. We never gave up hope that he could beat this cancer, even though it wasn’t discovered until almost last stage. I never actually asked the doctor what stage his cancer was. I believe it was an emotionally insulating factor for myself. I was afraid to know. I did so much research on alternative therapies that might help him, but I was afraid to know where traditional medicine saw him in his stage of cancer. Perhaps I was just better off that way. If I had known, perhaps that may have taken some of the fight out of both of us. We passed many milestones on our quest to heal him. To me, it wasn’t extending his life, it was attempting to heal his life and his body.

When someone is terminally ill, you want to preserve every moment, and that in itself becomes exhausting, though you’re not really cognizant of the toll day to day life takes on you. You want to try every avenue available to get better. I wanted my husband to visit a clinic we learned about in Mexico, where they had a good success rate of treating his type of cancer. I questioned our alternative medicine doctor about the latest therapies for cancer patients. I refused to let hope die, especially when my husband’s smaller tumors disappeared, and even when he kept losing weight. My mother said to me once, that some women might have left, but it never occurred to me. How could I ever think of leaving someone who I love when they needed me?

We took note of every mile marker along the way. Each step forward felt like a triumphant race to the ultimate goal, his being totally cured of cancer. I read many stories about others who had beat this devastating disease. It wasn’t until three weeks before my husband passed away, the night I had a dream, that I knew he was going to die. I’m sure many others knew right along he was going to die, but being in the thick of living this illness, it wasn’t an option for me. When I had the dream he died, I awoke and knew he was going to die. It was that simple.

All hope turned to despair. And still, we did not talk of him dying. Perhaps we should have, I don’t know. Perhaps he didn’t talk about his dying to spare me and my children. Perhaps he was afraid that even though I’d always been strong, maybe he didn’t want to see me break into a million tiny fragments. And I might have. I might well have broken apart, lost the emotional glue that was keeping me together in those last weeks. When hope flees, emotion and fear can break you down.

Some days I thought there was nothing more terrible than watching someone you love waste away from 200 lbs to ninety or so pounds. The spirit and the brightness in his eyes was undiminished, until the last eighteen hours. When you look into a loved one’s eyes and all you see is a black glassy emptiness, you know it is the end. For someone who likes to take control, and make other’s comfortable, I knew there was noting I could do. It was the most helpless I ever recall feeling in my life. The end had been written, but we never talked about the end. I think it was just too hard.