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GIST Support International - I was navigating a room full of strange faces by Marina Symcox
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I Was Navigating a Room Full of Strange Faces

by Marina Symcox

 

Dear Dr. Vasella

On May 3, I attended the Liferaft reception in Boston. I navigated a room filled with 90 unfamiliar faces. And yet, if I kept my eyes focused at nametag level--where I could read the names--then I was in a room full of good friends. I knew the people through their written words. We were internet soul mates, bound by cancer.

At one point, Norman pulled me over and said, "I'd like you to meet Dan Vasella." I raised my eyes from nametag level, and looked into a smiling European face. He did the head-nod-gesture that people do when they don't know exactly what to say. I did the smile-head-nod-gesture right back to him. I was uncertain if he could decipher my Oklahoma accent. My thoughts raced, "What do I say to the CEO of Novartis???" As I was shaking his hand, I blurted out the first thing that came to mind, "I was in hospice." Then my eyes filled with tears, and I overwhelmed with emot

The tears came as a surprise. For months, I had been very matter-of-fact about my close call in hospice. But at that moment, I experienced a flood of gratitude for being rescued. The gratitude was mixed with anguishing memories of the time when my body had betrayed me. The CEO of Novartis maintained eye contact and the smile. He was accustomed to his role in representing the pharmaceutical industry. But, I was not used to being a symbol for terminal cancer. I wiped away the tears, but I couldn't talk. I walked away to escape. Then later in the evening, I discovered something about the human face who represented the pharmaceutical industry. He could decipher tears.

Dr. Vasella spoke to our group. Towards the end of his address he said, "I looked at one of you this evening and I saw the tears in the eyes, and it touched me very profoundly." At that moment, I stirred a little in my chair. And perhaps, so did the others who had known desperate battles against metastatic GIST in the days before Gleevec.

Then, Dr. Vasella told us about his sister who had died at a very young age from lymphoma, and how he had watched his parents mourn. He explained that lymphoma is now treatable due to advancements in chemotherapy. And so, his company remains dedicated to the development of chemotherapy.

He concluded, "I thank you for the letters. I thank you for the greetings. I thank you for the tear, and I wish you well. Thank you so much." The human face representing the pharmaceutical industry had spoken directly to the faces of terminal cancer who filled the room. The "rescuer" had thanked the ones whom he had rescued. And at that moment, I appreciated that underneath the CEO of Novartis, there was a person named Dan.

Later, I turned around to find Dan standing in front of me. He eagerly said, "I want to tell you how profoundly you touched me." Again, I was unable to express my gratitude without crying. So instead, I showed him what I could not verbalize. I brought out a photograph dating from when I was in hospice. The photograph was taken four months before I started Gleevec, at a time when my health was in uncontrolled free fall. The photograph did not fully document my abyss in the days immediately preceding my first dose of Gleevec. However, the photograph told enough.

He studied the photograph and saw an image with advanced cachexia, ashen face, sunken eyes, and a melon sized mass of tumor protruding from the abdomen. He had a moment of reflection as to how the image in the photograph could have once been the person currently standing beside him. He called for a colleague to look at the picture. My hospice era photograph gave the CEO of Novartis something that a businessman would like to have. It validated the work of his company. The photograph also told a compelling human story to the doctor and private person who stood beside me. For a few seconds, Dan had a look of satisfaction on his face.

Then we parted company. He left to run his multi-billion dollar business, and to give press conferences. I went home to run my household, and to continue the task of learning how to live with hope again. At some point during my flight home, I became dissatisfied that I hadn't quite articulated my feelings on May 3. And so I decided to write a letter, and send it to the Liferaft newsletter. Maybe Dan will find it.

"Dear Dr. Vasella,

You, too, have touched me very profoundly. I thank you for the past 20 months of life. The time was more than I ever dreamed possible, and yet, 20 months won't satisfy my yearning for life. I am sometimes afraid that my miracle will end. I have used my second chance at life as an opportunity to cleanse myself from bitterness against cancer. And though we won't likely cross paths again because we live on different continents and circulate in different crowds, our lives remain intertwined over a small orange pill named Gleevec.

Signed, One of Your GIST Patients."

 

 



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