In the last 10 years, I have had four head and neck surgeries for malignant tumors, two courses of head and neck radiation, and one lung surgery to remove two nodules which turned out to be benign. I had two face and neck reconstruction surgeries, too, and 30 hyperbaric oxygen treatments for a broken jaw due to osteoradionecrosis. But it is the details of the first surgery that stick in my mind.
In my Philadelphia hospital, they allowed me to walk with my wife Susan from the prep area to the elevator for the ride up to pre-op. The nurse escorted us. I pulled along the wheeled stand that had my IV bag swinging to the rhythms of our steps. I held Susan’s hand and assured her that everything would be ok. She was allowed to come with me into the elevator. When we arrived at the O.R. floor, though, she had to stay put. I kissed her and walked out of the elevator and turned right toward the doors to pre-op, pushing the IV pole along. I heard the elevator doors close behind me and, for the first time, I was filled with fear. I felt scared and alone. I choked up. But I pulled myself together by thinking, “It’s O.K. It’s time. This is right. Do this.” The nurse opened the doors to pre-op and I walked in. I climbed onto a gurney and became another sheeted figure in a room full of sheeted figures, each with an IV tree standing nearby like a stainless-steel sentinel. I awaited my turn…
That was in November, 2002. About three years before this event, my internist, whom I saw annually for a physical, was so concerned about my lively drinking and smoking lifestyle (even though I had quit both in 1995) that he recommended an otorhinolaryngologist for me to see twice a year. He knew I had the classic profile for head and neck cancer. And so began my long relationship with the head and neck surgeon who saved my life numerous times. In January 2002, one of my adult sons died unexpectedly. It broke my heart and my Susan’s too. It changed things forever. My internist told me that carrying a heavy burden of grief can sometimes stress the human system in difficult ways and he encouraged me to be especially vigilant for anything going wrong in the coming months.
In the spring, around the time of my 61st birthday, I found two swollen lymph nodes in my left neck. My surgeon needle biopsied both and found that the swelling was caused by infection. He prescribed a course of powerful antibiotics and the swelling subsided. But that summer, I never really felt well. It was as if I had a low grade fever. My energy was sagging. In October, the two nodules swelled up again and open biopsy was recommended.
The November 2002 surgery was fairly straight forward. The surgeon removed the nodules, and while I was still open, they found that the infections in both of them were encased in malignant cells. The needle biopsy had pierced through the shells and extracted only infected material – missing the malignant cells in the casing around the nodules. With this information in hand, he continued the surgery by removing a dozen nearby lymph nodes to make sure the area was clear of cancer. Then he sewed me up: a neat, now barely visible, six inch scar on the left side of my neck. The diagnosis was squamous cell cancer of unknown origin.
Thirty radiation treatments were recommended and I completed them on January 31, 2003. I was asked if I wanted to have a feeding tube inserted because the inside of my mouth would be burned and irritated by the radiation. I said no, and for weeks I ate nothing but a liquid product called Resource 2.0, which provides perfect medical nutrition. I lost my sense of taste, and for a few months I ate no solid food other than ice cream and scrambled eggs and smoothies. It hurt to swallow anything and everything. Many of you readers know the drill. It was, I am told, a very heavy dose of radiation. The fatigue I experienced for months after the treatment was unlike anything I had known before.
That spring of 2003 my energy was limited, but I had an idea for a good project. My wife and I bought a deteriorating 30 year old 19’ sailboat which needed work. We named her Moonshadow. And while I lacked the wellness to be on my feet working for hours, I found that I could work quite well on my hands and knees: sanding, painting and varnishing. I had never done anything like this before. It’s amazing what you can learn by reading the directions on cans of paint and varnish. It gave me a real sense of purpose and accomplishment and made me feel alive. How I loved Moonshadow. She was beautiful when she was finished and I sailed her every minute I could that summer.
The burns in the lining of my mouth and my esophagus healed in about six to eight months. It is odd how that happens. The eating disabilities diminished so slowly that I often did not recognize how much progress I was making. One day late in the summer I realized I was pretty close to normal again. My energy was much better and I knew that some working out would get me back to where I had been. It was still hard to tolerate hotly spiced food, but otherwise I knew that I had recovered well. My sense of taste was back. I could swallow solid food with only occasional difficulty by lubricating it with water. Meat was always difficult though, so I gave it up. I was already used to carrying a water bottle with me to help with the dry mouth and I was eating a fairly healthy diet.
I was cancer free for what seemed a long time except that I had many early stage skin cancers removed. It reminded me that all of those wonderful shirtless, shoeless summers I spent along the Toms River in New Jersey when I was a boy may not have been quite as healthy as my mom thought. But I did learn to sail a little 8’ boat and that led me to Moonshadow later on. What a great gift from those summers.
Three years after that first surgery, I was diagnosed with a squamous cell tumor on the right side near the parotid gland. Surgery was scheduled for December 23, 2005. This surgery included a partial parotidectomy. The diagnosis was the same: squamous cell cancer of undetermined origin. No further therapy was recommended and recovery was less arduous. But I had a greater saliva deficit because my parotid was partially gone. I knew what to do about that. Never forget to bring the water bottle.
Sometime just prior to this second surgery, I decided to estimate what percentage of each day I must give to the business of being a cancer patient. On the first day out of surgery I was 100% a patient and too groggy and too much in pain to do anything except submit to medical care. But on the second day, I noticed that I was a patient only 95% of the time – the 5 % being given to communication with friends and family. I loved doing this. On the third day, I was released and went home. What a joy it was to be among all my familiar things. I talked with my wife Susan about cancer and non-cancer stuff, read a little, made my own coffee, watched favorite shows on TV and took short, slow walks around the apartment. Sleeping during the day was frequent, but I felt that I had made the leap to being only 80% a patient and 20% a man leading his life. With each day, the percentage changed and it was always moving in the right direction.
All of that was interesting to me. And it was good. But it didn’t really answer the question of how I was going to deal with the permanent damage and side effects of surgery and subsequent radiation. Simply put, the visible damage to my face and neck, as well as damage unseen by others, was part of me now and that would not change. I hated these things. How would I live with them? I learned that if I spent too much time obsessing over this I would be moving the percentages in the wrong direction. So I arrived at the place where I decided that I would give cancer treatment and recovery and side effects no more of the precious time I have in this life than is absolutely necessary. This involved learning to stay in the present. If I thought too much about the past or the future, I found that my attitude began to deteriorate and I would be giving more time to cancer than it deserved. I needed to stay in the present and lead a full life.
I read a book by Roz Savage called Rowing The Atlantic. Reading about her mental and physical struggles as she rowed for 103 days unassisted across the Atlantic Ocean helped me to understand how to accommodate the physical and emotional damage of cancer surgery and radiation. She isolated her most harsh and difficult physical and emotional challenges into a zone in her own mind that she called her discomfort zone. And once she isolated the elements that made up her discomfort zone, she could greet these things daily as old acquaintances, curse them roundly, and get on with the business at hand. Her physical and emotional scars became symbols of her toughness. By that odd mental trick, she made the discomfort zone part of her daily comfort zone.
The elements in Roz Savage’s discomfort zone became the spark and the fuel for her perseverance. That fire enabled her to avoid a failure of the spirit. And that is what I try to do.
Five months later, in early May of 2006, I had a squamous tumor removed from the right side and it was very involved with the parotid gland again. He removed the remainder of the parotid and the tumor and more lymph nodes in the area. Further therapy included 31 radiation treatments in August 2006, mostly slanting just under the surface of the skin. The conclusion had been reached that the cancer cells likely came from my many skin cancers and that some malignant cells probably hide in the dermal lymphatic system.
In between the surgery and the radiation, with two friends whom I had taught to sail, I chartered a 40’ sloop in the British Virgin Islands and we sailed her for a week. I skippered. They did the heavy work. What a great experience. We vowed to do it every two years. And we do that.
I had the radiation treatments in August after the charter. But it turned out the radiation didn’t do the trick. On February 9, 2007, two more squamous cell tumors were removed from cervical lymph nodes on the right side of the neck by radical neck dissection. Reconstructive surgery was necessary and they used muscle and tissue from the right side of my chest. Because they wanted to keep the vascular system intact, they moved the whole business up over my collarbone and used it to close the wound in my neck.
One month later, at the end of March, 2007, two nodules thought to be malignant were removed from my right lung. To everyone’s surprise, they were benign. I was mighty pleased. As I was recovering in the early summer of 2007, a friend of mine put me into his rowboat on Toms River and said, “You can do this.” I fell for it. In the fair weather I now row 7 or 8 miles a day. I have rowed hundreds of miles. It’s like a meditation for me. In 2009 Susan and I organized a sailboat charter on the Croatian coast with two other couples and we sailed the boat from Split through the hundreds of offshore islands in the Adriatic and ended our cruise in Dubrovnik. Ulysses had sailed through these islands many hundreds of years ago. We had a fabulous time.
As I write this I am 71 years old. I have not had a major surgery since 2007. My side effects are numbness and partial paralysis on the right side of my face, some swallowing difficulties, dry mouth, disfigurement, nerve damage affecting my right eye and my right shoulder, and osteoradionecrosis of the right mandible which has given me a broken jaw. I can live with it all. I do live with it all. I have a good life.
This past summer (2012) I was laid low for several months by a nasty kidney disease. While rowing and sailing on the Toms River, I had increasingly seen people on the river using stand-up paddleboards. I bought one and threw it into the garage to try when I was feeling better. While I was laid up, I used YouTube to teach me how it is done. In August I began using it. What a kick. I feel like a Samoan warrior when I am out on it.
I know that I am an optimist and that not everyone is. And I know that if one is a pessimist cancer will not turn them into an optimist. So what I have written here may not be for everyone. But maybe there is just one thing in here that will help someone. That would be a good outcome. I just try to get the best out of every day. Also, I attempt to stay fearless about trying new things. All of this has been made possible by superb medical care in Philadelphia. And most importantly, I stay devoted to my dear wife of 42 years, Susan. Without her loving help my passage would have been through much stormier seas.