Cover Design by Kim Phillips

Illustrations by Lisa Silver

Copyright © 2011 by Teri Simon. All rights reserved. Except as permitted under the United States Copyright Act of 1976,

no part of the publication may be reproduced or distributed in any form or by any means, or stored in a database or retrieval system,

without the prior written permission of the author.

What’s A Flying Elephant?

My ex-mother-in-law lived in bubble, a world of her design. It was a place where she could say things in her very Southern drawl like, “Ah hardly eat any-thing all day. Ah don’t know WHYYYY I’m so fat!” Usually she was munching on something when she said it, too. She stood five feet tall and was easily over one hundred pounds overweight. She lived a sedentary lifestyle and did very little to protect her health. Eventually, she required serious heart surgery and ended up in a nursing home. Throughout the twenty-plus years I knew her, I was fascinated by the bubble she lived in. She simply believed what she wanted to believe and did what she wanted to do. Was it a strong sense of denial? Extreme optimism? Sheer ignorance? Abundant hope? Whatever it was, it surely worked for her: she was eighty-three when she died. On December 2, 2009, I was diagnosed with stage-four, metastatic, non-small cell lung cancer. With no family history of cancer and having no predis-posing factors that made me a cancer target, the diagnosis was as shocking as a sucker-punch. I wanted to refute it, to deny it, to make it all just a bad dream. But tissue samples don’t lie. There was no denial to be had. I had cancer. Bad cancer. My personal and professional backgrounds include music, education, and social work. I’ve been a teacher, a therapist, a resource coordinator and a medi-cal social worker. I have experience coordinating services for people who have received diagnoses like mine. So I was undaunted in coordinating services for myself and in educating myself about my disease. Everyone warned me about immersing myself in research, especially the far-too-many friends who had per-sonal experience with cancer, and with very good reason: the information was especially disheartening, sad and depressing. Everything I read smacked me in the face with the absence of a cure, as well as mortality rates despite treatment. My oncologist never offered me a prognosis, and I never asked for one. She simply said, “My job is to help you live longer and help you live better.” I found myself thinking about my ex-mother-in-law again, and how she had operated in that little bubble of hers. I thought, “You know, that’s likely what kept her alive and functioning all those years, that little world of hers. And why not? Who does it harm to live in a bubble? If it keeps you going, what’s the down side?” Then I remembered a weird old saw that goes like this:

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

My diagnosis had shaken me to my core with the force of an earthquake. I realized that the only way for me to find myself with any sort of balance at all was to determine to embrace a little denial/optimism/hope of my own, to borrow a bit of my ex-mother-in-law’s bubble. I decided to become a Flying Elephant. I figured that if I thought I could fly, then I could. Meaning, if I believed that I could deal with my disease, then I really could live longer and live better. As long as everyone in my very wide circle stayed on the same page and believed an elephant could fly, then fly the elephant would! And to keep me smiling, I further decided to give my disease a more whimsical name: Lung Junk. A Flying Elephant in the Land of Lung Junk. The pages that follow are an account of my first year as a Flying Elephant in the Land of Lung Junk. I started writing about my experience on the day of my diagnosis, as a means to let about twenty people know what was going on without having to repeat myself. Because writing is a hobby, it quickly became an outlet for me: if you will, a bit of Flying Elephant fuel. Weekly, I sent out an update, and in a very short span of time, the number of people receiving my “blog” grew from twenty people to sixty people! And then the number doubled again. As of this writing, about 186 people receive my missives every Sunday. I call them “Blog Buddies.” They are also referred to as “The Wind Beneath My Flying Elephant Wings,” because they offer me up support and prayers and generous encouragement and friendship and kindness and love. It is they who encouraged me to create this book, to share my journey with more people, because, it would seem, mine is a sadly familiar journey. Everyone deals with some sort of “junk” at some point in life. My hope is that within these pages, you find something that makes your journey a little easier, a little lighter, a little smarter, and a little more peaceful.

With hopes for more flying time,Teri, the Flying Elephant in the Land of Lung JunkJune 2011

Dumped in the Land of Lung JunkDecember 2, 2009

Dear Friends, For those of you who have been involved in this Medical Mystery Tour for the past three weeks with me, here is the latest installment. I did not anticipate this medical journey to take the turn it took this morning and was hoping instead to be e-mailing you all in celebration because of this. I appreciate those of you who have been praying all along and ask for continued prayers for my children and for me as we move forward on the path. The situation is this: a couple of months ago, I began experiencing some problems with my vision–flashy light kind of things. At the same time, I also had pain in my right shoulder and back, pretty significant, mind you. At the same time, I began experiencing the re-emergence of migraine headaches, particularly around the beginning of my cycle. Carefully, I began to seek help from various sources, treating what I knew, and in ways that seemed reasonable for me (massage, acupuncture, visiting the gym). As the symptoms in my left eye became more concerning (I started seeing a blob-like shadow in my field of vision), I called my dear friend and eye doctor, Bob Simon. He saw me right away and found, on a dilated eye exam, that there was indeed something in my eye, something that hadn’t been there at my exam in February. He sent me to a retinal specialist, and that’s where the ball got rolling. A preliminary diagnosis of melanoma in my eye led me to have a physi-cal, a colonoscopy, a mammogram, and a chest x-ray, not to mention the old faithful blood work. All was well, and all test results were normal except for the chest x-ray. This led to a CT scan, and this led me to a pulmonologist and a bronchoscopy this past Monday. This ultimately led to a diagnosis just this morning (the pathology reports came back) of adenocarcinoma, i.e., lung cancer. Which also explains the tumor in my eye, which is not a melanoma after all, but more likely a mestastasis of the lung cancer. To say that I’m stunned is about the grossest understatement you could imagine. The eye doctor, the pulmonologist, and a couple of my uncle-the-radiologist’s colleagues at Ohio State joined me in really feeling hopeful that it was all just an ugly fungal infection called histoplasmosis, or maybe even tuberculosis, but alas, this is not the case. It is cancer, plain and simple, and it is in my body; it probably has been in there for a couple of years, and now it

just simply must be dealt with. I am blessed with friends of all kinds: praying friends, casserole-carrying friends, cry-with-me friends, dry-your-eyes friends, etc. I also have what are known as “friends in high places,” one of them being my wonderful friend and doctor, John McPherson. His efforts got me right into the oncology depart-ment at Vanderbilt; I was in the office not even three hours after the phone call from the pulmonologist. I will hopefully be accepted into a clinical trial of a drug called Tarceva, which at this time holds great promise for people in my situation. I say “hopefully” because I have a couple more hurdles to clear next week: meeting with the ophthalmologist at Vandy tomorrow morning to figure out what to do to zap my eye back into submission, an MRI of my brain (oy vey), and a PET scan to grade out the cancer and see if it is in my bones, which will take place next Tuesday. Also another lung biopsy, probably a needle biopsy, sometime next week. And I would be a big fat liar if I didn’t say I was a little scared. And a little angry and frustrated. Also stunned. Very stunned. But once I’m on the trial drug, life goes on pretty much as usual, with the occasional monthly visit to the oncologist. Can you believe that? All of which is to say that I need you. I need you more than ever, to pray, to listen, to laugh, to encourage, TO PRAY FOR MY KIDS, to rail at God if that’s where you’re at, to giggle, to fight, and mostly, to hope. There are no expectations for cures, but wouldn’t a miracle be awesome? There are no utterances of the word “remission,” but wouldn’t a “we can’t find a tumor on your CT scan, Teri,” be a blast? Let’s be outrageous, shall we? Let’s dream big, and pray big, and hope big! Let’s have our faith be bigger than our fears – or at least bigger than my fears! For those of you dealing with your own crises, and I know who you are, please know my prayer chain works both ways. I am praying for you, too. Always. And for those of you in a really good place in your life right now, DO NOT look at my situation as a derailment for your good time! I mean it! Rock on, rock hard, and smile! Let’s celebrate it! There are ways mysterious in this world, and I’m in the middle of a mystery. Thank you, a million times, for being with me as I see where the winding road leads...

With so much love,Teri

A DreamDecember 13, 2009

Dear Blog Buddies, Last night, I had a dream. I don’t know how or why, but I was with a group of people, climbing a mountain, maybe Everest. I was conscious in the dream of how weird it was that I was there. I mean, I love mountains, really love them, but snow, cold, ice? Not so much. I looked to my left to see the summit, and I saw a bunch of people dancing at the top. They were celebrating how easy it was to get there. An old man was making his way down to me, no oxygen tank, no problems, and he grinned a toothless grin at me and said, “That was a blast!” And I thought, “Wow, that’s pretty cool. Look how easy it is to get to the top! Maybe I’ll go up there!” Then I looked at the slope that led to the summit where, still, there were people dancing. The slope was covered with treacherous ice, so slick, so thick. And then I thought, “No way do I want to go up there. Geez, that’s a lot of ice!” But after a moment, I thought, “Well, if I can just get some of those shoes with ice picks on the toes, I bet I could!” Then I woke up. I looked up these words in a dream interpretation book I like:

SUMMIT: stands for high points in one’s life or spiritual journey

ASCENDING: always indicates one’s advancement

ICE: signifies “frozen” spiritual truths, frequently voluntarily frozen by self

DANCE: refers to a personal manner of expressing emotions

MOUNTAIN: refers to a major obstacle to overcome in life

MOUNTAIN CLIMBING: stresses personal efforts expended toward reaching one’s goal

Now, I realize, after looking at these definitions, there is just a big ol’ “DUH!” lingering over them. I AM dealing with a major obstacle in my life

(lung junk). I DO have a goal (kicking the lung junk’s ass). I AM working toward advancing and reaching a high point in my spiritual journey. And I WILL dance, really I will! But the fact remains that you’re just gonna have to help me continue to get there. I can only ride the wave of that good news I got last week for so long. Ahead of me is a mountain to climb. I have huge choices and decisions to make with regard to my health care, my nutrition, my spiritual health, my energy level and output, and my psyche. Some of this stuff looks particularly daunting to me, especially making huge changes to help me meet nutritional needs AND meet the greatest demand on me of all: REDUCING MY STRESS! (Yeah, I’m pretty sure a bunch of you were wondering when I was gonna identify that particular little bugger. The answer is: today. You can stop rolling your eyes now.) Here’s how you can help:

Follow my lead. If I’m having a good day, encourage me to keep going. Cheer me on! If I’m having a low time, encourage me to get back up. It will happen, and I will have moments of distress. Don’t let me stay in them, please. For Chanukah, my brother got me an adorable teddy bear to snuggle with at night. He’s deliciously cuddly, but doesn’t really have too much to say. Your words of encouragement will help fill in the blanks. Help me learn how to feed my body what it needs. I’m investigating the macrobiotic diet, as well as other nutritional methods to help heal my body. I’m hiring a chef to prepare meals for me and to teach me to be more efficient and effective in my kitchen. I do believe that nutrition will be a key factor in my healing. Really. If you know something about this, pass it on, please. Help me do a better job of managing my stress. I kind of suck at it and have for pretty much all of my life. I know that stress is a prime culprit in what’s happening to my body right now, and it must be combated. I find that humor is helpful, and laughter is excellent medicine. But more than that, I need you to help me stay in check. I can hear things like, “Teri, do YOU really need to be doing that, or can someone else pick that one up for you?” and “Have you taken some time to breathe and meditate and just appreciate that you could breathe and meditate today?” Try to offer your assistance in ways that won’t make me feel like I’m doing it wrong. I’ve spent a lifetime trying to overcome feeling like I’m doing it wrong. Time to KNOW in my bones that I’m doing it right, OK? But don’t take that to mean that you should treat me with kid gloves,

either. I’m good at a lot of things, and I don’t want to lose my place in this world just because I have lung junk to kick the ass of. My personality is one of “fixer” and “helper.” If I lose that, I lose me, and that’s not ok, either! Keep praying, and respect that my faith is strong and real and so help-ful to me. This past week, I was watching Joyce Meyer, who spent the week preaching on depression on television. I like her because she is so realistic in her preaching, practical applications of the Bible and all. Anyway, she talked about an epiphany she had years ago when reading Exodus 33:18-23. It’s the part where God tells Moses that no man may see God’s face and live. Joyce was saying that, when we’re in the middle of a crisis, we cry out to God for presence, for help. And so often, we can’t see God coming and can’t feel God in the middle of the mess. But AFTER the smoke has cleared, we KNOW that God has been there. Isn’t that cool? Man, I just love that one! So, please, support me in my faith, even when I can’t see God, and can’t feel God. Help me remember that God IS there, with me, for me, loving me. Respect my new goal of becoming the star of the Tarceva drug trial at Vanderbilt. Fifteen years from now, when some unfortunate soul has to walk this path that I now find myself on, I want the good folks at Vandy to say, “You know, we have this remarkable treatment to offer you. We know it works so well because this one woman, Teri Simon, has just blown all the success rates off the charts. We can’t stop congratulating ourselves for our genius! It’s just awesome, and you’re gonna be just fine!” Take good care of yourselves, too. Pray and bless all the caregivers in the world, which, actually, is all of us. Let’s use this experience as a means to examine our lives and discover where we can make changes to improve their quality. After all, it IS that time of year again. Let’s make New Year’s resolu-tions that really matter. And do them all in love! You’ll hear again from me after the needle biopsy on Tuesday. Here’s hop-ing for more good news! Thanks, as always, for letting me blog. Writing keeps it all goin’ for me, as do your love and support!

Blessings,Teri

Teri Simon, MSSW, has enjoyed varied careers in education, music, and social work. Her volunteer passions have included advocating for sexually abused children, teaching Torah to teenagers, and co-directing and writing music for children’s choirs at her synagogue

with her great friend, Lisa Silver. As a Flying Elephant, Teri has added advocating for lung cancer awareness and presenting an original workshop at Gilda’s Club Nashville to her volunteer menu. Teri lives in Nashville, Tennessee, with her two cats, Phyl and Lil, often referred to as Barfy and Little Kitty Poo Poo. She is the extremely proud mother of her three children, Emily, Taylor, and Joey.

Perspectives of a Flying Elephant is the chronicle of one woman’s first year of living with lung cancer. It is told via a series of blog posts that are frank, warm, humor-infused and, most of all, full of hope. It is the author’s greatest wish that readers who are struggling with illness or any other sort of “junk” will find something here to make their journey a little easier, a little lighter, a little smarter, and a little more peaceful.