Chordoma, caring and coffee part I

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By Sophia M.

womanwicoffee.jpgOh, does the aroma of freshly-brewed coffee smell good in the morning -- even if I cough and sneeze while drinking it. The coughing and sneezing are a small price to pay for having what, for me, is the perfect welcome to a new day. And, I surely did miss it during those endless months of recuperation.

I consider myself an optimist -- maybe as that famous song from South Pacific says, "A Cockeyed Optimist." Nonetheless, it took me a long time to say the words "I have chordoma disease." 

I guess because I have always refused to consider this disease a major part of my identity, and although it is a definite part of my physical being, it is not the core part of my psyche.

That's not to say that I'm unrealistic. I just prefer to compartmentalize that aspect of my life and put that bundle of worries somewhere "over there" while I live as best I can. Of course, sporadic moments remind me each day of my post-surgical deficits and that this disease and I are inextricably intertwined.

Those moments include setting aside the necessary time each morning (after coffee) to do the mouth, lip, tongue and stretching exercises to keep my speech and eating mechanisms more facile.

Looking back at the events that brought me to MD Anderson compels me to relive some painful, poignant memories. But I'm writing these words in hope that my story can, in some small way, provide inspiration for others.

Almost overlooked
Shortly after my dear husband died in 1999, despite the grief of being a widow after 40 years of marriage, I felt very well physically and was sustained emotionally by the ongoing care and concern of a loving family and wonderful friends. Having three darling grandchildren younger than 5 helped to ease the sadness and sense of loss and to salve my lonely spirit.

Then, one day, I experienced some tongue numbness and a minor speech problem that several physicians attributed to food allergies. With my usual cavalier approach, I thought, "this shall pass."

But the symptoms persisted and a friend suggested that I have a consultation. I soon realized that one can't keep ignoring medical symptoms and one must get a consultation if a problem isn't solved.

That consultation with an ear, nose and throat specialist saved my life. Speaking in a hushed, concerned voice he said, "You have a tumor and need a biopsy."

I was stunned.

He then wisely said, "You will have to fight this battle to win the war."

I quickly became aware that many challenges lay ahead. In the past 12 years I underwent two several hour-long surgeries, six weeks of proton therapy and stereotactic CT radiation. I have had tracheotomies, feeding tubes, ventilators, re-sections and grafts. (One would think, with all that, someone might have managed to give me a face-lift, too!)

In between all that, I managed to work as a consultant, travel with grandchildren to far-away places, enjoy the companionship of another man, entertain, sing again (surprisingly, my voice was unaffected by all this), and continue to compartmentalize the medical part of my life.

Holistic caring

If I had my druthers, I'd rather not have had to deal with all this but, I do. I keep in the forefront of my mind how fortunate I am to be a patient at MD Anderson, where leading experts in treating this disease offer such promising treatment options administered consistently within a truly holistic, caring environment. 

How many patients can boast of a solid team of experts who instill not only confidence in their abilities but have on their teams assistants who provide sustaining, attentive care whenever you need to hear a soothing, comforting voice? 

It's hard to explain to friends who have not had my experience how one can remain positive, even as a cancer patient. They look at me in amazement when I describe the many smiling, upbeat faces throughout the medical complex that exude a palpable feeling of hope toward the future.

How remiss it would be if I didn't pay tribute to the Jewish chaplaincy service. Their kindly visits to waiting rooms and hospital bedsides bearing homemade goodies, Sabbath candles and challah added that family touch for those of us from another city.

And how marvelous it is to rely on the awe-inspiring volunteer organization, Houston Ground Angels, who provide free airport service in cars driven by friendly volunteers and fly in those from afar who are in need of air travel arrangements.  

So, when you are drinking that morning cup or coffee (or tea), think of me, who, at the ripe age of 75 believes that living life as best you can is a beautiful gift for which to be thankful.

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