Tuesday, March 2, 2010
I Will Survive
Ever since my unusual diagnosis of a craniopharyngioma brain tumor, I have used the Internet and Google endlessly to find scraps of information. It is not a common condition (especially for an adult) and more than anything I want to share my experience with similar patients and hear their stories too.
At one point I found a site where adult craniopharyngioma patients described themselves as "survivors". With all due respect, I have never attached this label to myself. Patients of benign brain tumors with survival rates above 98% are not in the same category as what I consider real survivors: those who have beaten a deadly disease or cancer. I've had friends die of cancer, some very young. My mother died of an aggressive brain cancer four years ago. I saw that up close, and that was very hard to watch. My benign lump of tissue is just not the same as her glioblastoma.
If I am a craniopharyngioma survivor, then I am also a hernia survivor (twice) and an arthroscopic knee surgery survivor. Maybe I am also a trans fat survivor from my days in New York scarfing down hot dogs off the street. Quite seriously, survivors are the people facing long odds who find a way to live and beam love despite what has happened to their bodies. They have my utmost respect.
I continued my search online a few weeks ago, looking for people with whom I could connect on the Internet to share stories about craniopharyngiomas and their recurrence. Most often I found websites created by parents for their child. (Craniopharyngiomas are most commonly found in young children or in adults older than sixty.)
But I finally found a patient like me: Male, thirty-eight years of age (three years younger than me).
I called out excitedly to my wife, and I heard her come down the stairs as I began reading his blog. A few moments later my face changed.
MJ came into the room and asked, "You found someone your age with your tumor?"
"Send him an email."
"I can't," I said.
After that day I started thinking about things differently. Before, the thought of a "safe" brain tumor such as mine was an easy way to maintain my sense of humor and not deal with immediate concerns about mortality. But a 98% survival rate (in one study) still means 2% of the cases did not survive. I began worrying that I would be in the minority just like the man whose blog I stumbled upon.
Many times I have been in the 1%. When I had my hernia repair, I became one of the 1% of patients who are saddled with chronic pain for years afterward. I had a second surgery to fix that, but then I was one of the 1% of patients who have internal bleeding and all the complications associated with that. I always seemed to find myself in that 1%; I am always the one patient who is the exception. Or so it seems.
Yet once when I lived in Melbourne as a six- or seven-year-old, the cold water tap in our shower somehow became dangerously electrified. When I turned the water on it shocked me so greatly I remember being thrown back. A repairman came later, and he determined the electrical current was so strong that had there been water running or had my foot been on the drain I would have been electrocuted. My odds were not good that day, yet I survived. Even younger, when I was three years old in Mexico, I was hit by a car. One of my legs was broken and my skull was fractured. My odds were not good for surviving that either, yet I did.
There are so many people I have known -- and I mean people my own age -- who are no longer alive. Several from my own high school graduating class did not even make it to forty. I have known many people younger than me who have died of cancer, died of AIDS, died in car accidents, or died because they were unlucky enough to have booked a seat on Pan Am flight 103 (which crashed over Lockerbie, Scotland when a terrorist bomb exploded). I have taken some bullets in my own life, but I have dodged plenty of them too.
As I have thought my way through this, it is obvious that it is pointless to consider your own odds. What good does that do? Seriously, how can that help you at all? Once you become consumed with things on that level, you are using up time you could be living, loving, holding someone's hand, dreaming up music in your head, playing frisbee with your dog or photographing the buds on the trees. Would you rather do any of those things or would you rather be doing math and worrying?
Recently I received some great advice from a high school classmate who is a cancer survivor. She wrote to me:
"As a fellow survivor, PLEASE don't ever look at or consider timelines or studies. They are averages based on years of research. You and I are on the recent side of those years of studies and we make up the positive change. Live on brotha!"
Hear, hear! Here's to the survivors. Myself included, but modestly.
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You might want to join www.craniogroup.org/ Knowledge is powerReplyDelete
Im 25 with the same tumor. I found out a few weeks ago and like you have scoured the internet looking for any tid bits of information. Im happy to hear unlike the man you found, you are still alive. Thank you for sharing your story.ReplyDelete
I AM A 30 YEAR OLD FEMALE, I WAS DIAGINOSED IN 2006 AND HAD A VERY LARGE CRANIOPHARYNGIOMA TUMOR, I HAD IT REMOVED BUT IN 2009 IT RETURNED THIS TIME I HAD TO HAVE MY PITUITARY GLAND REMOVED. AFTER MY LAST SURGERY I STARTED TO HAVE PROBLEMS WALKING, SPEAKING, USING MY HANDS, AND HAVING SEZIOURS, IM AM ALSO ON APROX 6 DIFFERENT MEDS FOR THE REST OF MY LIFE I STILL HAVE TO HAVE MRI'S EVERY 6 MONTHS BOTH TUMORS I HAD REMOVED WERE APROX 5MM IN SIZE. AND SINCE IT WAS INTERTWIND WITH MY HAYPOTHELMUS THEY HAD TO LEAVE PART OF THE TUMOR. SO CHANCES OF IT RETURNING AGAIN WELL LETS JUST SAY IT SUCKS!!ReplyDelete
suvivor but in what state. My stephson has to have surgery to have it removed but is already in a nursing home because of reduced congitive function. He is unable to control impulses and has severe memory and judgement issues. He is not safe to be by himself and is not safe in a home enviornment and all this before we even go into surgury. All that damage happened because the pressure was too high in his head so they had to put in a shut to stop the pressure and it was infected so they put in another one and he had a bleed on the brain. So survivor yes but quality of life not even.ReplyDelete