Teri Simon

Q: Why did the flying elephant crash to the ground?
A: Because somebody told him that elephants can’t fly.

The course of my life changed completely on December 2, 2009, at 8:20 a.m., when my pulmonologist called and told me, “Teri, it’s adenocarcinoma.  It’s lung cancer.”  I said, “Well, that’s just wrong!”  And he said, “I know!”

For almost a month, I had been undergoing medical testing after a tumor, believed to be a retinal melanoma, was found in my left eye.  I had had every medical test known to man by then, including a colonoscopy, a mammogram, blood work, and a complete physical including a chest x-ray.  Everything came back negative except for the x-ray, which looked like pneumonia.  But since I’d had a preliminary diagnosis of melanoma, further testing was required.  The CT scan looked the same as the chest x-ray, so a bronchoscopy was ordered, and voila:  in one short sentence, the course of my life was forever changed.

Within hours, I was in the oncologist’s office, thanks to the good efforts of a great friend who happens to also be my cardiologist.  Had it not been for him, I likely would have had to wait months for an appointment.  The oncologist told me that I had probably been walking around with lung cancer for a couple of years.  Of course, my mind went back to 2007, when my brother, concerned for the terrible cough I had, made me swig down half a bottle of cough syrup in the drugstore parking lot, and promise to see a doctor if the cough didn’t go away.  But the cough DID go away, so I didn’t see a doctor.  Immediately I wondered:  Was THAT when the cancer had started?  What had I done? The word “cancer” was not something I ever in my wildest dreams imagined would be applied to me.  After all, I was a never-smoker with absolutely no family history of cancer.  I lived a very healthy life-style because heart disease ran rampant in my family, but it never occurred to me that I would be at risk for any kind of cancer, let alone LUNG CANCER!

As is lately often the case, simply because of the stigma and assumption that lung cancer is a “smoker’s disease,” by the time I was diagnosed, the edict was rather grim:  Inoperable Stage IV Metastatic Non-Small Cell Lung Cancer (NSCLC).  There is no Stage V.  To mollify me, my oncologist explained to me that had I gone to a doctor about my cough in 2007, a chest x-ray likely would have shown what appeared to be pneumonia.  The doctor would have prescribed antibiotics, and I would have felt better.  And likely, I would have ended up in her chair two years later anyway.

Since my diagnosis, I have participated in a successful clinical drug trial for a drug called Tarceva (I have an EGFR mutation, which proved to be in my favor), two unsuccessful clinical drug trials (one of which resulted in some very serious side-effects), undergone a radiological stereotactic procedure to my brain, did a standard chemotherapy treatment of Carboplatin, Taxol, and Avastin (so I’ve done the bald look thing), did Avastin alone, Alimta alone, had radiation treatment to both my eyes, had radiation to my hips and pelvis, had Taxotere chemotherapy, and now am on Navelbine and back on Tarceva. To date, I have metastases in both of my eyes, my liver, my spine, my ribs, my pelvis, my brain, and my left lung.  Although you might not recognize me as a cancer patient if you saw me on the streets, after nearly 3 years living in the Land of Lung Junk, there has been a toll taken on my health and lifestyle. I now have a stairlift in my house that I use daily, I have both a small wheelchair and a wheeled walker that are used because I don’t have the stamina to walk long distances, in my car there is a Handicapped Placard, I need to take what I call “rest periods” after doing pretty much anything, and I have learned to let people help me.  Still, with modifications, I lead a relatively “normal” life, and go about most of my days with gratitude and hope.

What’s most important to me, however, is that early on in this journey, I decided to become a Flying Elephant in the Land of Lung Junk, giving a little whimsy to something so frightening and a little hope that maybe, just maybe, I could treat this disease as a chronic manageable disease, instead of thinking of it as a death sentence that could be brought down any minute.  And even better, as a Flying Elephant, maybe I could help other people dealing with not only lung cancer, but any kind of long-term debilitating, frightening disease.  My whole life has been about being a helper in the world; Lung Junk has given me a new venue to do my life’s work.  I hope my books, this website, and my weekly blogs may bring some of that help and hope to you, too!

podcast interview with Teri Simon Listen to an interview with Teri on WBUZ Radio, Nashville: Click here.

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