I’m Going To Live Until I Die
By Ed Griffin
In the spring of 1996, my doctor, Todd Arnold, sent me for some tests. The normal range for the PSA is .0 to 4.0. Mine was 19.0 Dr. Andreou, an urologist and like Dr. Arnold, a human being, arranged for me to go to the outpatient clinic of Surrey Memorial Hospital for a biopsy of my prostate.
The terror of hospitals began. Only once since my birth had I been in a hospital and that time I was unconscious for twenty-four hours after an automobile accident. As I sat in the special waiting room, my imagination went to work. Strip, and put on this hospital gown. We are going up through your rectum and…. Your chances? Six months at best.
We were five men in the room in the labyrinthine basement of Surrey Hospital, all of us pretending nothing was going on. We acted as if were dressed in blue hospital gowns because our regular clothes were in the cleaners. We read Macleans and Sports Illustrated and stared into space. I pretended to read a book about creative writing, Bird by Bird, by Anne Lamott.
But deep in my mind the terror continued. Remember twenty-three years ago, Ed, when your mother died of cancer? Remember her crying for more painkillers, for a spoonful of water? Remember how she died in the middle of the night by herself and the hospital aides stole her gold fillings? Remember?
And then, in the cold hospital waiting room, an angel appeared. She was just walking by and I called out to her. Nurse Lee Beliveau was one of my creative writing students. She was an RN who wanted to be a writer. She wrote about her life as a nurse, the pain and the joy, the death and the life. She wrote poems and articles that said, “Yes, I’m a nurse, but first I’m a human being. My patients need medicine, but also they need love and understanding.”
Lee sat down next to me and started making jokes with me and the other four. Soon we were all brothers. She didn’t say to me, “You’ll be fine;” rather she told me I had a good doctor. I thought she must be busy, so I said, “You needn’t stay.”
With the wisdom born of love, she ignored me.
Finally Dr. Andreou came into the waiting room and called my name. I, who never touch anybody, grabbed Lee’s arm. I was scared.
Two days later, on May 10, I had an appointment to find out the results.
To prove to myself that I was healthy, I rode my bike to his office, a good hour ride. As I pedaled along, I reflected on how well things were going. I had just been hired as an adult teacher of English as a Second Language, a job I loved. I knew that new immigrants would learn not just English from me, but my view of Canada and even of life.
Doctor Arnold works hard, going from patient to patient through long days, but he always knows when to slow down and talk to his patients. On this day, May 10, 1996, he talked to me. His face appeared very serious.
“You have prostate cancer. The kind you have is not the best, but it’s also not the worst. If you have to get cancer, this is one of the better ones to get. If the cancer is confined to the prostate, chances are it can be cured. There are three basic treatments.”
I heard nothing after the word, cancer. I had cancer.
I will never see the tulips come up out of the ground again. My wife, my son, my daughter — this can’t be happening to me.
I was going to die.
I was no longer Ed Griffin, husband, father, writer, organizer and the teacher who the men said, “brought laughter to Matsqui prison.” I was a victim of cancer.
The first person I met at home was my daughter. Kerry was twenty-one, a Simon Fraser student, a lover of English literature. Pity the poor girl, but the gods had made her my clone. She thinks like me (but she’s smarter), she eats like me, she laughs like me.
I stood by the refrigerator in the kitchen and told her I had cancer.
No tears, no desperate hug to keep me from falling into the grave. She took my hand and asked me to sit down and tell her all about it. We talked — rather I talked — it came pouring out. She listened. She made me a cup of tea. She knew all about the prostate. (Hell, until that spring I had no idea where the prostate was.) She said her generation would face a lot more cancer because of pollution.
“What am I going to do?” I pleaded.
“You are an eagle,” she said. “The eagle knows something is wrong with its body, but it knows more, that it is still an eagle and it flies on, above the trees.”
I got up and hugged her. She hugged me back. She loved me.
I gave her a keepsake booklet parishioners gave me thirty years ago, when I was a priest in Cleveland Ohio, to thank me for my marching in Selma. After all, I might die soon.
My wife came home. We’d been married for twenty-six years then. She was my opposite, she, the quiet one; me, the party person. She loved a simple evening at home and I was off to meeting after meeting. When I was a priest, I used to get up in the pulpit on Sunday and tell people what love was. But it was when I left the priesthood and married Kathy that I found out what love was really all about. I told her what Doctor Arnold had said. She cried. That big word CANCER seemed to hit her, like it had hit me. Her husband was going to die.
She hugged me. Then she got mad. “Wait a minute. I’m not putting up with this. You have a problem; we’re going to take care of it. We’re going to fight this cancer thing. This is Friday and we go out to dinner on Friday, so let’s go.”
The next day my son, Kevin, called. He was twenty-three at the time and locked in the struggle of his life, a recruit in the US Army. He was in the middle of boot camp at Fort Leonard Wood in Missouri and having a rough go of it. He had to get up at four in the morning, run two miles, do sixty sit-ups in two minutes and shout out, “Yes, Drill Sergeant, SIR.”
He didn’t need to worry about me. Besides, it was very important to me that he succeed. He told Kathy and me how he had to climb a forty-five foot tower, swing over to a rope and slide down. “I got half way up, and I stopped. I knew if I looked down, I would panic. If I looked up, I would panic. So I just looked straight ahead and climbed the tower and slid down the rope.”
What an inspiration to me. Don’t look back, don’t look forward, just look straight ahead. Don’t think about the past, don’t think about dying, just look at this moment.
My whole family rallied to my support. My mother-in-law prayed for me, my brother-in-law sent me an article from Time about prostate cancer, my sister said she was coming to see me.
Despite this strong family, I still didn’t get the healing message. I was no longer a human being. I was a PSA of 19 with a Gleason rating of 7. My training in theology and in social work was gone. I had lost my soul. It had washed down a big medical sink.
On Monday I had to teach a class. There were two women in the class who were using creative writing to help them deal with the pain of arthritis. Even though I admired these two women, I said nothing about the shameful disease that had hit me. How can a man say anything in public about his sex organs?
On Thursday I taught another class. One woman wrote a story about how she came up with her novel. “I had cancer,” she wrote, “and the doctors were testing this and that. I let the doctors worry about my symptoms and I wrote the novel. That was twenty years ago.”
I wrote to a good friend of mine, one of my students from Matsqui Prison. I told him about getting prostate cancer. He said, “It sounds to me that you are one of the lucky ones with an early diagnosis and a good chance of treatment successfully. So come on, Griffin, get a grip, or I will have to send some of the boys over to tune you up.”
I laughed. A moment of brightness in a gloomy time.
Almost immediately after diagnosing the cancer, Dr. Arnold and Dr. Andreou ordered a bone scan for me. That afternoon, the man who gave me all the bad news, Dr. Arnold, called me at home. His voice was high, excited. “The bone scan was clear, Ed.”
I signed up on the Internet for a newsgroup about prostate cancer. Three or four times a day I got a digest of all the e-mail going back and forth in the newsgroup. It was too much. Much of it was high tech debate about the most effective drugs etc. It was not a warm place where human beings gathered.
The Canadian Cancer Society had set up a prostate support group that met the fourth Saturday of the month at Surrey Hospital Annex. I went to the Hospital Annex on the last Saturday of May and for a while, out of shame, I contemplated saying I was looking for the loading dock, but then I faced up to it and went into the meeting. Instantly I felt at home. Here were real human beings, men who were fighting cancer. They talked about surgery and radiation and sex and catheters and spiritual healing. In many of them I sensed a deep level of spirituality. Many of their wives attended as well. The group helped at first, but the urologist who volunteered to come and speak at every meeting made mistakes that my urologist, Doctor Andreou, never made.
“Yes, yes,” this doctor said in answer to a question, “a Gleason 7 and a PSA above 15 doesn’t look very good. The cancer’s probably spread. Not much hope.”
Doctor Andreou never predicts the future. He always lays out some new hope, a new treatment or a new strategy.
I was, in medical terms, a Gleason 7 and a PSA of 19. According to the doctor at the prostate support group, I should throw in the towel.
But I didn’t. June 11th and the CAT scan came. I went to Surrey Memorial Hospital in the morning. Off with my clothes and on with hospital blues. Lie down on a gurney. Nurse Lee came by again and she and I and the prep nurse, named Roz, started talking. “Attitude is everything,” Roz said. “I’ve beaten cancer and I did it through my attitude. Get a book called Love, Medicine and Miracles, by Dr. Bernie Siegel. You can get a copy right next door at the Fraser Valley Cancer Centre.”
Suddenly it all started to click. For over a month Kathy had been telling me she and I were going to beat this cancer thing. But no, I’d been moping around feeling sorry for myself.
As I waited for the CAT scan, I realized I was in some trouble. I wasn’t in charge of my life or my illness anymore. I resolved to change. Roz led me into the CAT scan room, which was very high tech. Another nurse took over and told me to lie down on a table. She was all business and I wished Roz had stayed. At one point I had to hold my breath for forty seconds. As I got off the table I told the new nurse, “There are only five screws holding that ceiling apparatus up.”
“How do you know that?”
“Because checking something out was the only way I could make it through forty seconds.”
She laughed. I had made someone laugh again. I must be getting better.
The next challenge was to walk in the door marked “Cancer Centre,” even though it was right next to the hospital. If I went in there, I was either delivering something or I had cancer.
“Excuse me, I’m a cancer patient. Could you tell me where the cancer library is?”
The receptionist showed me and I got Siegel’s book. I felt pretty damn good about publicly identifying myself as a cancer patient.
I read Siegel’s book and, strange to say, even the results of my all-important CAT scan faded in importance. I was a person. I was going to take charge of my life. My life did not go up or down based on medical tests. Siegel quoted Hippocrates, who said he would rather know what sort of person has a disease than what sort of disease a person has. In other words, did the person take charge? Did they despair? Did they whine or did they fight?
Two days later my faithful Dr. Arnold called me. Again his voice was high and excited. “The CAT scan came in fine, Ed. As far as we can tell, there’s no spread to the lymph nodes.”
That afternoon, Dr. Andreou suggested surgery to remove the prostate and set the date for October 1. It was the best news I could have heard. Even though there are often problems of incontinence and impotency following surgery, it was the recommended way for men to get rid of prostate cancer, at least it was in 1996.
I found out that a good practice was to shrink the size of the cancer before surgery. This was done with hormone therapy. I had an article that showed how the treatment led to a more successful surgery. I went to the doctor who had seen me at the cancer agency. She refused to prescribe the hormone therapy. “That’s a new practice that’s not proven yet. We won’t do it.”
A terrible confrontation was coming for me. I had always followed doctor’s advice without question. I took a deep breath and asked, “Can I see the head doctor here?”
She shrugged and gave me his name. “He’s in today. You can go see him.” She gave me directions, I went to his office and he said no, too.
So I went to Doctor Andreou and gave him a copy of the article and told him about being refused twice. He glanced at the article, gave me a small smile and said, “Yes, I know about this. It’s correct.” He ordered the treatment for me. At that moment, in my mind, Doctor Andreou ascended Mount Olympus, the home of the Greek gods.
Since it was testosterone that was spreading the cancer, the hormone treatment suppressed it until surgery. “Of course,” Doctor Andreou cautioned, “during the surgery, before we remove your prostate, we check to see if there’s lymph node involvement. If there is, removing your prostate would not do much good.”
The sword of Damocles, immanent danger, still hung by a thread above me, but wasn’t that the way of all life? A year before I would have slapped my hands together and said, “Well that’s the end of prostate cancer. The doctors will cut me open and scrape the stuff out. Now I can get on with my life.”
I would have been Joe Casual.
But I was humbler now. Deep down I always felt I had everything figured out. No more. Now I had cancer. I was very human. I understood other people were very human. I was more sympathetic now.
As I waited for surgery, I got in touch with what I liked to call the doctor inside me. “Things are going, great, Ed,” my internal doctor said. “You’ll survive the operation fine and the cancer will be gone.”
The most amazing change came to my wife and me. At that time we’d had twenty-six busy years together, raising two children, being involved in politics, starting our own business, moving to Canada. The busy years had build some walls and cut off some forms of communication. But this cancer experience had made us like young lovers again. We wanted nothing more than to be around each other. It made no difference at all that our lovemaking might change after surgery.
I wrote about my experience with cancer. I produced two articles, the first one called Curing the Spirit and the second one called The Doctor Inside. They were positive articles that painted a picture of a person who could face cancer and live with it. I polished and polished these articles. Now all I had to do was live up to the character I had created on paper.
I hesitated to send what I had written to the local paper. Writing had helped me personally. Writing had helped me figure things out and made my new attitude seem more real. But why go beyond that?
Besides I didn’t want people treating me special, feeling sorry for me. But on the other hand, I had lived my whole life in a circle of friends. Everywhere I went, I tried to build community and the community helped me. So why not now? Why not tell my friends I was fighting cancer? Maybe the collective will– or is it prayer?–would save me.
Near the end of September I sent my first article to the local paper. It was very well received.
Dr. Siegel’s book suggests each person draw a picture of themselves and their disease. I drew a picture of myself surrounded by mobs of people. I think they were singing and dancing. Whatever they were doing, the cancer was falling out of me.
October first came, the surgery date. I wasn’t scared at all, even though it was major surgery. Before I knew it the operation was over and I saw my wife coming toward me in the recovery room. Deep down inside I smiled. I was indeed healthy, as the doctor inside had diagnosed.
As I recovered in the hospital, there was no time for noble thoughts. Life was dealing with pain and trying to go to the bathroom again. My prostate was gone and hopefully so was all the cancer.
I went home from the hospital. I had a big stack of books to read and articles to write, but I was very weak. All I could manage to do was watch the World Series, which wasn’t such a bad way to spend my time.
Ten days after surgery I went in to see Doctor Arnold for the results of the pathology report following surgery. As I sat in the waiting room with my wife, I touched base with the doctor inside. He was smiling.
Doctor Arnold came into the room. “The cancer has gone beyond the prostate and it’s a worse kind of cancer than we initially thought. I’m sorry, Ed.”
Damn you, Doctor inside. Why did you lie to me? I’m not healthy.
I went home and turned off the World Series and read more Bernie Siegel, his second book and his third. My whole life had been upset again. I wasn’t cured. I still had cancer.
The students I worked with in the English as a Second Language program sent me get well notes. “The big thing and important thing that you need curing your spirit. You said on newspaper: ‘Don’t look back. Don’t look forward. Just look straight ahead. Don’t think about the past, don’t think about dying, just look at this moment.’”
Here were my students quoting me back to me. How could I resist their call? I had created a hopeful, courageous, positive spirit in writing and now I had to live up to it.
After surgery I had absolutely no control over my bladder. I had to wear pads and change them every few hours. Here I was, just turned sixty, and I was back to age one. “Relax,” the doctor inside said. “Do the exercises the doctor gave you and just take it easy. Give it time.”
Sure enough, on January 1, 1997 I put away the pads.
The end of January came and Doctor Andreou suggested I go through a series of radiation treatments. The rule was that I had to show up with a full bladder. This kept the bladder out of the way of the radiation.
Thirty-three times I lay on the table. The technicians placed me in exactly the right spot, left the room and shut the thick, leaden door. I lay there and looked at the ceiling waiting for the first of four rays to shoot into me. I had to go to the bathroom. The doctor inside came up with a novel idea. “Why don’t you pray?”
“Pray? I hadn’t prayed in years. Besides, I hate those selfish prayers, like “God, cure me of cancer,” or those un-spiritual prayers like, “God, help us win our baseball game.”
“No,” the doctor inside said, “just talk to God. Find out how She’s doing. Mention the struggles in your life. It’s a conversation.”
I don’t know where the doctor inside went to medical school, but I was pretty impressed with his advice.
I tried prayer. It was very peaceful. It was not at all like ‘I’m going to die, so I better start praying.’ God and I talked. It seemed okay for me to ask for help for others, but not for myself. I asked for help for people I met in the cancer clinic, like the young mother who turned her baby over to Grandma and went in for chemotherapy. I thanked God for the caring staff, mostly young people.
The funny thing about this newly rediscovered prayer was that I used to be a professional pray-er. I was trained for twelve years to be a priest and I served as such for five and a half years. When I left the priesthood–poof. Prayer disappeared.
The radiation itself didn’t hurt, but after a while I was confined to the bathroom and ended up with hemorrhoids.
By the end of March, 1997, the radiation was completed. My PSA stayed in the acceptable range for three years, then it started to creep up. Doctor Andreou put me on a hormone treatment to slow the cancer down and that worked well until 2009, when my PSA went up, hormone treatment or no.
“What are we going to do now, Doctor?” I asked, fearful that the end was coming soon.
Doctor Andreou was all about hope. “Ed, I want you to participate in a study. There’s a new drug–it may help you.” I started on the new drug or a placebo–I wouldn’t know which for six months–and I consulted the doctor inside.
He sat me down for a good talk. “There’s living to be done, my man,” he said. “You should be grateful that you’ve lived thirteen good years with cancer.” He paused and gave me a stern look. “I’ve got three rules for you. Number one: pay no attention to statistics.”
“Wait. You’re not a statistic; you’re a human being with free will and determination. And remember those statistics were gathered years ago before they had some of the medical advances they have today.”
“What’s the second rule?”
“Live until you die.”
What was this doctor inside? A song writer? But it was good advice. Stop worrying about how long you’re going to live and just live.
While I was focusing on my cancer, life was going on all around me–in my family, with my writing students, and with my students in jail. It was time to get back to them.
“And the third rule?”
The doctor chuckled. “I’m going to quote you to you–‘Writers write.’ Keep writing. You’re sort of an avaricious guy. Writing is your way into a more spiritual world. Keep at it.”
Writing saved me. My wife couldn’t figure out how I went through all this stuff with such a good spirit. But it was because I made a new me on paper. And now I wanted to be that new me.
The new drug didn’t work, so it was off to the cancer agency for ten rounds of chemotherapy in the spring and summer of 2010.
Again, I found the young nurses who administered this treatment to be full of hope. There was a nurse who had the word “Integrity” tattooed on her arm. I asked her about it. She said she took care of her father when he was dying and he was a man of great integrity. When he died, she decided that she wanted to live her life that way, too. So she had the word tattooed on her right arm, in big letters, so she would always try to make decisions “with integrity.” I was deeply impressed. She gave me chemo three out of ten times.
The nurses’ positive attitude brought the doctor inside back to the surface. Fourteen years he’s been with me. And so today, with the help of the doctor inside, I jump back into my life. I teach, I write, I go for a walk every day. I laugh a lot more than I used to. I try to look fear in the face.
What’s my prognosis? I don’t know. Who can predict their future? Smart people don’t sit around figuring out their prognosis, they live their present. That’s what I have to do–live right now. The hell with my prognosis.
I’m going to live until I die.
About the author…
Ed Griffin teaches creative writing at Matsqui Prison, a medium security prison in Western Canada. He taught the same subject at Waupun prison, a maximum security prison in Wisconsin.
He began his professional life in 1962 as a Roman Catholic priest in Cleveland, Ohio. There he became active in the civil rights movement and marched in Selma with Doctor Martin Luther King. Removed from a suburban parish for his activities, he served for three years in Cleveland’s central city. His years in the Roman Catholic Priesthood are the subject of his book called, ONCE A PRIEST.
“The book chronicles my life and shows how even after I left the Catholic Priesthood, the ideals and the methods of being a priest stayed with me. After I left, I never talked about God or religion in a public setting, yet I always tried to deepen the spirit of people I was with. This held through my career in politics, in business and in teaching. You can take the man out of the priesthood, but you can’t take the priesthood out of the man.”
After leaving the priesthood in 1968 he earned a masters degree at the University of Wisconsin-Milwaukee and was elected to Milwaukee’s city council in 1972.
Griffin and his wife, Kathy, opened a commercial greenhouse in suburban Milwaukee in 1976. They lived where they worked and shared the joys of raising children and growing flowers. In 1988 the family, Ed and Kathy, Kevin and Kerry, moved to British Columbia, Canada, where Griffin helped establish a dynamic writing community in the city of Surrey. He is the founder of Western Canada’s largest writer’s conference, the Surrey Writers’ Conference.
He has published books, poetry, plays, short stories and a newspaper column. His writing has won several awards and the American Humanist Society has honored him as the teacher of a prize-winning inmate writer. Griffin believes that all the arts, including writing, should be encouraged in prison. “As Aristotle said, ‘art releases unconscious tensions and purges the soul.’”