Louis V Cesarini - Survival Symphony: My Lung Cancer Journey

Louis and Scott Celebrating Scotts 50th Birthday at the Mirabell Palace Gardens, Old Town Salzburg, Austria, August 2013

Copyright 2021 by Louis V. Cesarini
All rights reserved
Version 1.0

No part of this book may be used or reproduced in any manner whatsoever without written permission from the author except in the case of brief quotations embodied in critical articles or reviews.

ISBN: 978-1-736-5406-4-0

Design and production by Maureen Forys
Editing by Laurel Leigh and Sabine Sloley

Manufactured in the United States

Disclaimer: This book is based on notes and recollections of Louis V. Cesarini. Some names, locations, and other identifying details have been changed or omitted to protect the privacy of individuals.

www.survivalsymphony.com

For my husband, Scott Simon. Without his love, devotion and amazing commitment, this book would not be possible.

Survival Symphony is also dedicated to all stage 4 lung cancer patients.

by Corey J. Langer, MD

I f attitude alone could defeat cancer, Louis Cesarini would have been disease-free within two weeks of his diagnosis. Since the onset of this unwanted and unanticipated journey in the world of oncologyeighteen months ago at the time of this writingLouis has been indefatigable. He has approached his lung cancer diagnosis with tenacity and courage, and a unique, innate buoyancy of spirit I have seldom witnessed in my thirty-four years as an oncologist. Some patients have trouble coping with their cancer. This can affect caregivers and family by leaving them exhausted and deflated. Louis is quite the opposite. Louis radiates energy, even in the face of symptoms that would leave others defeated or depressed. The force field of energy and optimism Louis has generated elevates those around him. It revitalizes them. It makes everyone who cares for him feel part of the battle, invaluable allies in his fight, not just rote or perfunctory clinicians or practitioners. We need not tiptoe around the diagnosis or its implications. From day one, Louis has been fully engaged in this battle, and, I might add, incredibly engaging in his interactions with those who take care of him.

As Louiss medical oncologist since the summer of 2019, I have witnessed firsthand his spirit and strength. Cancer is a wily, formidable foe. It lays booby traps we often never expect; and the therapies we deploy to battle this disease, even while shrinking tumors, can cause side effects that will often sideline otherwise resolute, physically intact individuals. But Louis has remained unfazed. With his husband Scott by his side and the prayers and support of innumerable friends, coworkers and family, Louis has been able to wage every battle, making the transition from chemotherapy and immunotherapy to targeted therapy, dealing with life-threatening pulmonary compromise and spread to his brain and bones, always focusing on the activities that give meaning to his life, in particular, his love of the French horn. He has used his capacity to play this unique instrument as a gauge of his well-being. Its a personal metric. Every time he successfully completes a piece is another victory in this relentless battle. Hence, the title for this memoir.

While Ive lapsed into clichd military analogies to describe Louiss experience, he has appropriately and more specifically employed musical allusions to elucidate his life and his journey in the world of oncology. This pacific theme captures his life before the cancer diagnosis and aptly resonates with his experience since. Most pieces of music have well-defined movements; some end too quickly. I pray that Louiss Survival Symphony lasts indefinitely and that he be rewarded with the long-term quality survival he so richly deserves. I have promised him I will do everything I can to help make this possible.

I remember being a little boy sitting on our sofa watching cartoons as my parents smoked one cigarette after the other in the kitchen, or when my dad would smoke nonstop in the car. The smoke made me so nauseous, but thats just the way it was back then. I love my parents dearly. They are gone now; neither one died of lung cancer. In the past, aside from early stage breast cancer, there was little patient awareness about lung cancer. Today, due to FDA approvals of new treatments, we are seeing an increase in lung cancer awareness. It is my hope that this book helps support this worthy cause. In my experience, many people react to a lung cancer patient similarly to how some people reacted to patients with AIDS: they deserve it. Certainly, hopefully, we can agree today that they dont deserve it and that its a totally unfair assessment.

On the day I received my lung cancer diagnosis, at age fifty-nine, I was stunned with disbelief. I had done everything I was supposed to do. I exercised every day, ran a 5k once a week and ate healthy foods. I never smoked, and I have no family history of cancer. How could this be? I began connecting the dots of events that occurred in my life that may have exposed me to second-hand smoke or some sort of carcinogen that made me susceptible to cancer. Perhaps it was when I was age nineteen and in the U.S. Air Force, stationed at Grand Forks Air Force Base, North Dakota, guarding nuclear missile silos, or maybe back in 2012 when I lived in New Jersey, in an apartment above a garage that reeked of gasoline. I may never know the one or multiple causes, and knowing wouldnt change much. Once I knew what was wrong with me, I immediately went into survivor mode, drawing upon my oncology sales, training and marketing experience for the various available treatment solutions. Thats what I want to tell you about in this bookhow I chose to live, instead of accepting a death sentence.

I mention how music, specifically playing my French horn, has repeatedly helped me cope with tough times throughout my life. I was fourteen years old when my parents went through a painful divorce. It was playing my French horn and enjoying its beautiful sound that always made me feel good about myself. Over time, I grew away from my horn. This didnt bother me though, because in my heart I always knew that someday my French horn would be part of my life again. It was just sitting on a shelf waiting for me to pick it up. A few years ago, after a nearly twenty-five-year break from playing, I picked up my horn and re-taught myself to play. I had a great horn teacher in college, so I knew what to do. It was bumpy at first, but I knew that it would be like building blocks: little by little, that beautiful French horn sound would return to fill my heart and soul with abundant positive energy. Within months I was up and running, participating in the Curtis Institute of Music Adult Summerfest, performing on campus at Lenfest Hall. Little did I know that one year later I would be diagnosed with lung cancer. My French horn had returned in time to save me again.

Thank you for deciding to read Survival Symphony. Its nice to meet you in these pages. My full name is Louis Vincent Cesarini. I now refer to myself as Louis 2.0. I recently turned sixty years old, and if growing old is a precursor for being wiser, then I should be really smart by now. I have a wonderful husband, Scott. Weve been together for twenty-seven years. I came out in the 1980swhat a crazy decade! Coming out of the closet during the AIDS epidemic was not fun. Unfortunately, I have encountered that same type of looking down their nose reaction from some people when they learn I have stage 4 lung cancer. If you share any of that experience, I recommend just smiling and feeling sad for those misinformed people.