In the Fall of 2006, I bought a pair of green sandals with a cute kitten heel. I enjoyed the color and style and made sure they were comfortable, but it never occurred to me to examine the sole. Several days later I put them on and headed down my basement stairs. One step onto the threshold and out went my feet as though I’d stepped onto ice: one foot went back and the other scraped the wall in front of me. Fortunately, the basement stairs are very narrow, and I was able to catch myself by grabbing both walls of the passageway.
Thus began an astonishing journey. After my narrow escape, I felt fine, except for some discomfort in my left wrist, elbow and right ankle. I figured I should check myself out, primarily for the twinge in my left forearm. So, I began with a referral to see a hand surgeon who wanted to give me cortisone injections, but she wasn’t sure what site to use. Next, another hand specialist who wasn’t sure the problem had to do with my hand – maybe it was tennis elbow? My referral was to a neurologist to confirm a diagnosis, but he only tested for my wrist and not my elbow. He concluded there was no nerve damage in my wrist and ordered an MRI to see if I had a pinched nerve in my back. The MRI came back. It showed no pinched nerve – but it picked up two tiny spots in my right lung. My internist sent me for further tests and an eventual biopsy. The diagnosis: lung cancer!
Fortunately, my Internist sent me to a top-notch surgeon, Dr. John Wain, at Massachusetts General Hospital who scheduled my surgery for three weeks later. Because of my early diagnosis, he was able to remove just the two small tumors in two lobes and a small section of tissue around the sites. They were small, early stage, and contained – they hadn’t spread. My oncologist, Jennifer Temel felt I didn’t need any further treatment as did her colleague, Dr. Tom Lynch, Chief of Thoracic Oncology. My internist reflected on all the events that led to this fortunate outcome and said to me, “Somebody up there really likes you!” I went home from the hospital to recuperate.
Most people would say there’s nothing fortunate about getting lung cancer. In fact, it was horrifying, shocking and upsetting to wrestle with the diagnosis and try to figure out what it meant for my life and life expectancy. As I came to terms with it, I also found that the experience gave me a different level of awareness of how lucky I have been. My husband, Richard and daughter, Micaela went to all of my doctors visits with me. My son, David and his wife, Amy arranged for food to be delivered. My daughters Claire and Robin came from San Jose and Chicago to nurse me in the hospital and when I came home. My dearest friends rallied to help me in every way possible, from researching the latest treatments and outcomes of lung cancer to bringing me dinner and keeping me company. Their extreme kindness made me vow to be a better friend to someone in need. So many people expressed concern, good wishes and a desire to be involved and updated about my recovery. I was so moved by how connected all of our lives are, even extending to good people we‘ve never met.
All of us know someone who has had lung cancer. Most of us have stereotyped lung cancer: I know I have. It seemed like a disease reserved for elderly men who smoked for a lifetime. This isn’t true. It can happen to any one of us. This disease touches all of our lives. It might be a member of your family, a friend or a neighbor. Perhaps you are a survivor. Or, perhaps its someone you feel you know. Did you experience the same shock and unfairness I did when learning that Dana Reeves, a young non-smoker, died after years of heroically caring for her husband Christopher Reeves following his riding accident? Perhaps after inviting Peter Jennings into your home every evening to bring you the news, you too were surprised by his illness and death. Remember how charming and funny Suzanne Pleshette was on The Bob Newhart Show? For me, no one had a voice like Beverly Sills. All of these well-known celebrities suffered and died from lung cancer.
That’s why early detection is so important.
In the days after I came home from the hospital, I worked to get my strength back. I did laps around my bedroom for exercise. I used my recovery time to reflect on my life, on what was important and how to spend my time. I found inspiration through a book recommended to me by a tour guide, Tolga, whom I’d met while on vacation in Turkey. I emailed him about my lung cancer. He wrote back, quite unsentimentally, and said to read The Alchemist, a fable by Brazilian author Paulo Coelho. It’s a book about learning to read the omens strewn along life’s path, and, above all, following our dreams.
This wise guide said it was for me to make something of my experience. After I finished reading the book, I realized that the key point was about transforming commonplace events into something of value, making something of each and every experience. This message spurred me to think about how I could find a way to make something worthwhile and life affirming out of having had lung cancer, an experience that on the surface was of no value whatsoever.
The answer was Upstage Lung Cancer.
Creating Upstage Lung Cancer
My life has been about caring for people and bringing joy into their lives when I can. I have two professions. I am a clinical psychologist and I am a professional singer. As a psychologist, I have the honor of being invited into peoples lives and connecting at a deep level. As a singer, and a member of The Follen Angels (my jazz/cabaret group), the music is also about making meaningful connections. Our group has so much pleasure creating music together and then sharing our programs with enthusiastic audiences. Music ignites deep feelings and often, important memories. For me, music is life affirming. It’s therapeutic. Could I turn these skills and interests into something that could make a valuable contribution to raising awareness of lung cancer and its serious consequences, while supporting research on early detection and new treatments for this dreaded disease?
The birth of an idea
My reflections led to ideas about creating a musical theater event that could be used to raise money to benefit lung cancer research and raise the awareness of our cause. I began to conceive of a show to feature the great showman, Florenz Ziegfeld. I shared this with my friend, Buck Spurr, producer and entertainment consultant, who was immediately sold on the idea. Next, I turned to another dear friend, Crispin Weinberg, who for many years had served as producer for a show, Devotion Follies, we had worked on together in Brookline, Massachusetts. I asked him for his help with new project and he was eager to be there 100%. Finally, I called my writing partner, John Lamb and asked him if he’d be willing to put our current project, a mystery novel, on hold to help me finish writing a musical theater show I’d begun called, Ziegfeld! He too was enthusiastically on board.
I met with nationally renowned Thoracic Oncologists Tom Lynch, MD and Jennifer Temel, MD at Massachusetts General Hospital Cancer Center in Boston, Massachusetts. We discussed the exciting and innovative research going on at the Massachusetts General Hospital Cancer Center looking at early detection and new treatments for lung cancer. I told them I wanted to use the Ziegfeld! project to raise funds to support these efforts. They couldn’t have been more enthusiastic.
Crispin and I contacted Susan Gessner, who six months earlier, had been diagnosed with lung cancer in a very early stage, too. She happily agreed to serve as President of the Board of the non-profit organization we wanted to create. Our friend, Melissa Langa, an attorney, volunteered to help us with the papers and we submitted the application in August, 2008. From there, we contacted a group of dear friends with exceptional abilities and talents and asked them to serve on the Board of Directors of our new organization. We held our first Board meeting in September. Each member brings particular areas of expertise and energy to make us an effective, think-outside-of-the box organization. We also asked Tom Lynch, MD, Jennifer Temel, MD and John Wain, MD, all outstanding specialists in the field of lung cancer to serve as a Medical Advisory Board. They each accepted with great enthusiasm.
Our Board of Directors agreed with my vision that we could do more if we created other shows as we work on producing Ziegfeld!. And so, our name Upstage Lung Cancer was born. In October, 2008 we had our first fundraiser, a cabaret/jazz concert in a private home. The evening included a jazz performance by the Follen Angels, and a very inspirational talk by Dr. Jennifer Temel. Dr. Temel discussed the status of lung cancer and her own work on the psychological aspects of living and dying with the disease. The event was a tremendous success, and we are planning a second, similar program on March 29, 2009.
I continue to be thrilled by the outpouring of help from professionals who volunteer their time and help. Robin Friedman at Visual Velocity continues to give us amazing graphic designs and creative website development support. Fatima Scipione at McK Healthcare helps us to think about fundraising and promoting our organization. Steve Biondolillo is helping us figure out how to raise lung cancer awareness so that it equals breast cancer awareness. Paula Davis, medical writer, and Annette Pringle, editor, make sure everything we write is of the highest quality. And there are many more wonderful volunteers helping us to make Upstage Lung Cancer to succeed.
The fact that I have had lung cancer is ever-present for me. My six month CT scans are wonderfully reassuring yet terrifying to anticipate. There is always that What if…? fear.
But, instead of focusing on “What if?” I want to put my considerable energy into working on our original Ziegfeld! show and thinking about creating other exciting musical events. We are on our way. We are using music and entertainment the – elixir – of life to fight lung cancer.
We won’t stop until we upstage lung cancer!