Archive for February, 2012
“Memoirs of a 30 Year Cancer Survivor”
We all have a story to tell. A good story has a beginning, middle and an ending. My story has many beginnings and thankfully no ending as yet. My story is of survival, rebirth, finding my voice and finally healing.
Just a few years after Richard Nixon declared war on cancer, I heard those fateful words, “you have cancer”. I was 20 years old and had been married 11 months, 3 weeks and 2 days. I was trying to find my way in the world and looking to start a life with my young bride.
It was June 1975 and I had some nagging groin pain which I attributed to working in construction and a probable hernia. I went to the emergency room to get checked out but they could not find anything and recommended I see an urologist. I for the most part ignored the suggestion as I really did not want to see a doctor but my wife kept pushing me to go. Finally in early August, she made an appointment for me and simply told me to go. That was August 6th 1975 at 3:30 pm. After the usual 20 questions and extremely awkward “drop your pants and let’s have a look”, the doctor looked me in the eye and said “you definitely have a problem Ron”. My heart stopped beating as panic spread through my every fiber.
I was admitted to the hospital the following day and had surgery the next day. A right radical inguinal orchiectomy was performed and later that day I was given the grim news. The diagnosis was “pure embryonal carcinoma with vascular invasion”. I had testicular cancer, a virtual death sentence in those days.
I had not been sick since I was a child and had no idea how to react or deal with the news. The hospital stay was a nightmare as I felt my life slipping away and so totally out of control. I felt like a cornered wild animal scratching and snarling in feeble attempts to regain some level of control of my life and dignity.
I went home after a few days and spent the rest of the week regaining my strength. That week was our first wedding anniversary and for a surprise anniversary gift my wife gave me an 8 track player (yes definitely dating us) and a John Denver tape. I excitedly set up the system and plugged in the tape. The very first song to play on that system was “Lady”. For those of you that are unfamiliar with the song, it says “did you think our time together was all gone” and goes on to say “our time has just begun”. How prophetic that truly was!
After a week, the doctor’s office called and said I needed to come back in and discuss my prognosis and future treatments. I agreed rather expecting it would be “take two of these and call me in the morning”. Apparently my urologist didn’t quite see it the same way. He sat me down and proceeded to tell me I had a 50% chance of living 2 years and a less than 10% chance of seeing my 25th birthday. He told me he knew of ONE patient with my pathology that lived!
Needless to say my head was spinning, I could hardly breath and my short life passed before my eyes. I went home to my wife having no idea what the future would hold or even if there was a future. I don’t think I even told my wife the specifics the doctor had conveyed to me, just that the prognosis was not good and that he wanted me to go to a major cancer center at either Dartmouth or the Mayo Clinic.
Somehow that evening I became a survivor determined to beat the odds. In fact I became so focused on surviving and having a future I never again even considered I would not live! Perhaps it was inner strength or denial or naïve or a combination of all of it, but I somehow found the strength to deal with the coming months of surgery, chemo, poking and prodding and maintain some level of sanity and will to live!
The same focus, determination and denial caused me to shut my story inside. I told no one. I had a dear friend of more than 20 years that did not know my cancer story. Cancer was not something anyone talked about then and especially a young man with a sexual component or connotation! It wasn’t until I faced the 30th anniversary of my diagnosis and my 50th birthday that I finally began to think back about what I had been through all those years ago. I contacted the doctors, oncologist and hospitals and asked for copies of my medical records and proceeded to sit down and read them. It brought back so many emotions I had locked away deep inside. For the first time I really saw the fear, panic, shame, heartache and the pain I locked away. The scars both physical and emotional.
I decided to write my story as a way of working through the emotions, a catharsis of sorts. As I did this I began to realize I had not only locked away the specific emotions related to my illness, I had locked away most of my emotions in total. For so many years I had feared that allowing myself to feel any kind of emotion would open Pandora’s box and allow all the pain and hurt and fear to escape. I had in essence lost myself.
Through this process I began researching all I had endured, the surgeries, the chemo, the statistics and slowly became more aware of the greater cancer community of which I had hidden myself away from. I read about so many other survivors including Lance Armstrong and learned of the first LiveStrong Summit is 2006. I had never interacted with another cancer survivor in the 30+ years since my diagnosis. There were no support groups then. The internet was in its infancy and available only to academia and so I was learning for the first time I was not alone.
I applied to the LAF Summit fully expecting to be declined but low and behold I was accepted. My wife (of over 30 years at that point) told me I needed to go there alone. I needed to face my fears and to once and for all learn I was never alone. Not then, not now.
To say that that experience changed my life is one of those huge understatements in life!
I had been miraculously cured 30+ years before, but it was not until I began to interact with other survivors and to share my story that I finally began to heal………….
Survivorship is not about living or dying. It is not about the physical being. It is a state of mind. An acceptance of one’s situation and a determination to live each day to the fullest extent possible no matter how many or few we have ahead.
Survivorship starts the day of diagnosis and evolves and adapts as our situations change. It may mean one thing the day after diagnosis and yet something else 30+ years later.
It took me over 30 years to heal and make peace with my cancer and that only came when I began share my story.
People have told me I have an inspirational story but honestly I only did what I had to do and what allowed me to get through some of the most horrible days. I believe we all have our crosses to bear and that although my experience was no fun, I also know so many suffer so much more than I ever did!
I also know we have no idea how much we can truly handle until we are forced to do so! The strength of the human spirit is truly remarkable and resilient. I said in the beginning my story had many beginnings as I feel I have been granted so many rebirths in my life. I was reborn when I came out the other side of cancer and yet again when I found my voice and finally began to heal through getting involved with other survivors and advocacy.
I did in fact write my survival story which started strictly as a cathartic process intended only for me to help me finally heal. But at the urging of those few individuals I shared it with, it has now been published as a book, “Memoirs of a 30 Year Cancer Survivor”.
I can honestly say that the “fear of recurrence” never really goes completely away, but we do learn to deal with and manage it. I also know today, that if I ever have to face it again, I know I can endure and have found inner peace.
I can only hope and pray that my sharing my story helps someone to know there is indeed life after cancer. There is hope. You are not alone!!
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