By Stan Goldberg —
My life is tethered to a number that few people have ever heard of: a Gleason score of 7. It’s a measure of prostate cancer severity that ranges from a forgettable 1 to a terminal 9. My lucky 7 places me on the cusp of living and dying. Not a particularly comfortable neighborhood to take up residence, but one in which I’m forced to live. During the operation to remove the prostate, my surgeon found that the cancer spread beyond the prostate gland and into one of the lymph nodes. Three weeks after the operation we jointly decided what to do about it.
“You have two choices,” he said.
“To live or to die?” I responded with gallows humor. I only became alarmed when he didn’t smile.
“The first is waiting until the PSA number rises. A rising PSA indicates the cancer cells are growing. When it happens, we’ll start female hormone therapy. The hormones will reduce your level of testosterone, which feeds the cancer cells.”
“And the second?” I asked.
“To start immediately.”
“Which has the best chance of killing the cancer?”
“Neither.”
Neither? Although he kept talking, it was as if he was speaking an unintelligible foreign language. Eventually, I heard English again.
“Hormone therapy won’t kill the cancer cells no matter when we start. It just prevents them from growing.”
It was the first time I realized they’d be there forever, flowing through my body, waiting, and getting hungrier with time. They’d be back-not today or tomorrow, but someday.
My long-held belief that I controlled my life was obliterated by microscopic specks streaming through my blood and organs. And, as a university professor, the most frustrating thing was I couldn’t reason with them!
Within two weeks of the first injection, I felt my body changing. Nothing dramatic; rather, it was more like watching an overripe tomato start to rot. First came the hot flashes, then I gained weight, followed by exhaustion, and finally moodiness.
As my life became more disrupted, I read how-to and inspirational books, each filled with vast amounts of information about cancer and consoling words about how to live with it. But I needed something I could grasp and directly experience. I found it, not through books or contemplation, but through volunteer work with children and adults who were dying.
My decision to become a bedside hospice volunteer wasn’t a welcome topic with most family and friends. To ask why I was choosing to be with people who were dying would draw attention to the possibility that my life might not be very long. But there were some people who did want to know about my hospice experiences. I told them that hospice isn’t a place; it’s a state of mind, a willingness to compassionately accompany someone on their final journey, not judgmentally, but as a friend who was willing to hold one’s hand, cry, or just witness the end of life.
As I walked that path with more than 200 people, I watched the joy of a woman whose mouth was wired closed as she smelled a fragrant slice of apple and I learned to accept what’s possible rather than what’s desired. I sat with a musician who was listening for the last time to a Gregg concerto and I understood the beauty of things that had no words. As I played Chutes and Ladders with a child, I felt grief for the first time in my life and cried as he told me he knew this would be our last game.
The Vietnamese Buddhist monk Thich Nhat Hahn suggests a simple method anyone can use to experience connectiveness, regardless of the nature or intensity of their spirituality. He says to think of each person as if he or she is your mother, who nurtured and protected you as long as she could. How can you not help her when she needs you? When I embraced this idea and viewed my patient’s journey as my own, the frightening image of death was transformed into a great teacher.?
Most of the lessons, such as the power of forgiveness, may have sounded mundane to me until I saw the profound consequences it had for a lonely man whose last wish was to be forgiven by his sister. Others, such as the importance of kindness, may have sounded like a cliche to me, until I witnessed how a simple act infused with it overcame a woman’s lifetime of misery and self-loathing.
Being in the presence of people who are dying opened doors behind which I found wisdom unobtainable through any other experience. In the 15th Century the Ars Moriendi, or “Art of Dying,” published by the Catholic Church, provided practical guidance for the dying and those attending them. The book summarized in one sentence the lessons I learned from my teachers: Learn to die and you shall live, for there shall be none who learn to truly live who have not learned to die.
–Excerpted from the introduction to “Lessons for the Living: Stories of Forgiveness, Gratitude, and Courage at the End of Life (Shambala, ’09) by Stan Goldberg, professor emeritus in Communicative Disorders. For more information, visit www.stangoldbergwriter.com
Tags: grief, hope