The surgeon was known as a good technician but everyone agreed he had neither personality nor bedside manner. He was engaged to remove a small benign lump from the side of my face. He arrived on a Friday night, 24 hours after the surgery to announce the results. "The surgery went well, the facial nerve is intact and the parotid gland was completely removed and sent to the lab." "However, . . ." The pause after however was less than second, but my mind raced to anticipate the next words. " . . .you have Lymphoma." I didn't know what lymphoma was, but I knew that the "OMA" part was like carcinOMA and melanOMA. He quickly added, "It's not curable but very treatable, it's not cancer." Sounded like I should be grateful, it was VERY treatable and it wasn't cancer. "I'll refer you to an oncologist. "Whatever it was or wasn't, I knew about oncology.
Five years have passed since that day. I know about non-Hodgkin's lymphoma .I know about CT scans, bone marrow biopsies, blood counts, and chemotherapy .I know it is in my bone marrow and it probably won't go away. I know about depression, anger and fear created by the disease. It is my constant enemy but it has also become a teacher. These are some of the lessons I have learned so far:
My lymphoma began a long time before the diagnosis, perhaps years. With the exception of one swollen lymph node, I did not feel "sick" at any time from lymphoma prior to diagnosis, and I have not felt "sick" since the diagnosis. Anyone could have my lymphoma right now and not know it. We don't know what causes it, so prevention is not directly possible. How many others walk around feeling healthy and yet carry a life threatening illness? Good health is an illusion and outside our direct control. (Control is a word that echoes daily when living with lymphoma.)
I weathered 3 divorces, unemployment and Mom's death prior to my diagnosis. I felt a lot of pain in my 48 years, but nothing prepared me for a life threatening illness that brought me face to face with death. 24 hours after the diagnosis was the worst day of my life. When the surgeon pronounced the word "lymphoma" my chest felt as if all the blood were suddenly being sucked downward. This feeling recurs and I know it to be a physical sign of terror. Alone in the hospital room that first night, I could find no emotional relief, nothing to hold on to. Somehow morning arrived, and I insisted upon being released no matter what the doctor preferred. Anne, my partner, took me home and was a source of strength, but I couldn't bring her strength inside me where it hurt. The doctor said it was "treatable," but I couldn't find hope inside. I remembered my Mom's doctor saying her cancer was "treatable but not curable." She died 3 months later.
Humor had always carried me through life's other dark times, but it had disappeared. Since there was no relief from the pain I yielded to the paradox of "moving into the pain." I asked Anne to rent the movie "Fearless” on the way home. It is the story of a man who survives a plane crash and struggles with his mortality and the meaning of his life. The movie made me look at death, loss, pain and life outside my own story. Anne and I cried through the whole movie. Anne listened to my sorrow, shared my tears and demanded courage, saying, "I WILL NOT LET YOU GIVE UP."
Religion and spirituality were never structured in my mind and a higher power, at this point, could be blamed easily for a disease with no known cure. I began to hear old sayings in my head. "God gives us only the burden we can handle." "If you survive an ordeal, you are stronger for it." Anne told me the story of the Holocaust survivor asking God where he was when they were being killed in the camps and why he hadn't stopped it. God replied, "Was there in the camps suffering by your side." I thought about the poem,” Footprints," about how God carries you in the worst times. I never had concept of a God like that. My spirituality involves the spirit of goodness in people that causes them to act in ways that transcends their own needs. It would feel good to be carried right now.
While in the abyss, terror waves washed over me out of nowhere - my chest got tight, my breath shallow, my hands were weak and shaky. A word on TV could trigger it - anything about life length, a person's worth or death. Questions, Questions! Why this now, I'm just getting on my feet? How can I ever live alone? How can I help my kids with this? How will I concentrate at work? How do I tell my friends? How will I deal with their tears? Will they withdraw from the pain? When I have chemotherapy, will I lose my hair? How do I manage my finances - long term, short term or both? I always wanted a chance to be heroic, to be truly tested. Is this my chance? Why couldn't it have been a burning building?
It was early in the morning on Day 3 when I opened the shades to see the sun. The stereo was on and the music felt good. It was the first time I realized that I was feeling better than the day before, that there was a possibility of coming out of the abyss. Anne and I rode to a garden supply shop. I sat in an unfinished Adirondack chair facing the sun while smelling the dampness of growing plants. I scooped up a handful of wood chips and held them to my nose, deeply inhaling while I felt the texture. It was rough and cool. I moved close to the flowers and looked at the intricacy and, again, inhaled the fragrance. This was life asserting itself, telling me,” come back to the present, leave the pain and terror, forget about tomorrow, live fully today."
Calls and cards began to descend. Friends, family and acquaintances all reached out. It felt as if I was being lifted up by dozens of hands and carried forward. I have touched many lives and those people reached out to say thank you and offer support. My 11-year-old daughter wrote to me daily. My ex-wife said, "don't worry about support payments." Flowers and stuffed animals also arrived. All my life I looked for my special "thing," my special talent. I tried teaching, photography, music, boating, shooting, gardening, motorcycles, writing, management, marriage, parenting and sports, but I never felt fully satisfied. I now think the special skill was people, relationships. It never really mattered what I did, my special thing was right in front of me.
The evening I received the diagnosis one of my first desires was to speak with someone with lymphoma to learn how they cope. Within a week I had found two lymphoma survivors who inspired me with their stories and gave me hope and courage. Within my own organization and professional relationships are eight people who live with cancer, about whom I had never been aware. Each is a member of the survivor family. Each has been to the abyss and rejoined the living. Each reached out to me to help the next survivor move forward.
Before the diagnosis I used to occasionally ask myself, "If I had six months to live, what would I change in my life?" The answers were sometimes useful, but because the question was only an exercise, the amount of change in my life was buffered by, "Yes ...but..." A life threatening illness with uncertain time frames causes the question to be asked for real. "Your life and its length are uncertain, you may not live to be old. In light of that, do you want to make changes in your life?" For me the answer was yes. The changes are now driven by clear priorities: health, family, friends, contributing to society (which may include work), and, hopefully leaving a legacy of some sort. Quality becomes important in all areas. One person asked, "Why don't you just quit your job and travel? I would." Lymphoma is a long term battle most likely over many years. Quitting a job might be a good move for some, but for me work feels like a worthwhile contribution to the world. I would love to be independently wealthy and work less, but I would still want to do something useful. My children are very important tome. I want to give them my knowledge as best I can. I also want to be a role model of which they can be proud.
Standard medical procedures offer help and I augment them through visualization, massage, vitamin supplements, positive attitude and supportive friends. Spontaneous remissions happen but we don't know what causes them. I can do all these things and believe that I'm having an effect, but there is no way to know until it is over one way or the other. The sense of control is an illusion. I am now in remission and during the remission I am aware of every lump, bump and pain. If it returns I will have to struggle again with the emotional roller coaster. In the other parts of my life, I control what I can, but I must remember there is no control for lymphoma.
What have I accomplished in life? What is left undone? What has given me great joy, a sense of worth? Did I make a difference in the world? These questions have helped me frame my legacy. I have felt better after taking stock of my contributions to the world. I am finding many facets to my legacy, none of which involve money. This area is a work in progress, and writing is playing a major part.
Each day the mirror reveals a normal looking person. A few joints are sore from sports injuries or arthritis, but other than that I feel fine. Yet even as that image of health stares back at me, I'm aware of a life threatening illness lurking inside. It's not just in one spot but throughout my bone marrow and lymph system. But each morning I shower, dress and head off for work. I ride my Harley, plant seeds in the garden, adore my children, complain about taxes, devour the news and make love as often as possible. The river of life sweeps me forward and when the disease tries to pull me down, I swim harder.
As of October 2006 I remain disease free - 11+ years of full remission. Life really does go on.
OncoLink is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through OncoLink should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem or have questions or concerns about the medication that you have been prescribed, you should consult your health care provider.
Information Provided By: www.oncolink.org | © 2016 Trustees of The University of Pennsylvania