TABLE OF CONTENTS
Chapter 1. Suspicions
Chapter 2. The Diagnosis
Chapter 3. Getting Started
Chapter 4. Getting Irradiation
Chapter 5. Life After Irradiation
Chapter 6. Am I Cured?
Chapter 7. Cancer Returns
Chapter 8. What is the Best Surgery?
Chapter 9. Did Laser Surgery Work?
Chapter 10. Chasing the Cancer
Chapter 11. Another Attempt
Chapter 12. The Definite Surgery
Chapter 13. The Surgical Intensive Care Unit Experience
Chapter 14. Going to the Regular Floor
Chapter 15. Returning to the Hospital
Chapter 16. Surgeons’ Attitudes
Chapter 17. Recuperation
Chapter 18. Trial and Errors
Chapter 19. Is it Cancer Again?
Chapter 20. Eating
Chapter 21. Getting Emergency Care
Chapter 22. How Others Treat Me
Chapter 23. Regaining My Voice
Chapter 24. Back at the Speaker’s Podium
Epilogue. Finding a New Mission
This book is dedicated to my family.
The editorial assistance of Autumn Conley is greatly appreciated. I am grateful to my wife Joyce and my son Yoni for their helpful input and advice in writing this book.
The names of the physicians mentioned in the book were altered.
This book captures three years of my life that followed a throat cancer diagnosis and tells my personal story of facing and dealing with medical and surgical treatment and adjusting to life afterwards. This period of my life was and is still very challenging and difficult. As a physician with lifelong experience in caring for patients, I gained realizations, insights and new perspective on these events. I felt for the first time the effects of severe illness through the eyes of a patient and observed and experienced events I was never aware happened to them.
I am sharing my fears, anxieties, frustrations, failures, and ultimate adaptation and adjustment to life with continuous uncertainty about the future. After hearing other head and neck cancer survivors tell their stories, I realized that mine is not unique. It is shared by many others.
It is my hope that the readers of this book will gain insight into the mind of a patient with a life threatening illness such as cancer. I hope this book will assist others in dealing with trying times in their own lives. Most importantly, I hope the book will shed light into the struggles that we face as patients with cancer of the head and neck and how we strive to overcome them. Through my words and my story, it is my hope that physicians, nurses, and other health care professionals may be more aware of what their patients actually experience, and patients who face similar hardships may find out how to cope with them.
Chapter 1. Suspicions
Learning that I had been diagnosed with cancer was overwhelming. It all happened unexpectedly, and I was completely unprepared for it. It all started about three months earlier, and in the most unlikely place.
My throat hurts really badly, I thought, as I lectured to an audience of over 200 Ear and Throat Doctors in Bursa, Turkey. The truth is, my throat was very irritated, and I found that strange because I wasn’t otherwise feeling ill at all. As soon as I finished my talk to my colleagues, I went to my hotel room and opened my mouth to see if I could find anything that might explain the pain, but I saw nothing. I rinsed and gargled water, but the pain did not subside.
I was surrounded by hundreds of experienced otolaryngologists but, ironically, I could not ask any of them for help. This was because we were at a beautiful snow resort in the mountains, about 200 miles away from Istanbul, for the Annual Meeting of the Turkish Society of Otolaryngology. They had invited me to give several lectures on head and neck infections. Most of the participating otolaryngologists there were with their families, enjoying the break from their busy lives by skiing and partaking of other resort activities once they had followed the protocol of their scientific agendas. I knew many of the doctors personally. As a physician and an infectious diseases specialist with special interest in head and neck infections for the past decade, I had been here to Turkey to lecture almost annually.
I did mention my symptoms to one of participants, and he offered to examine me in his clinic after the meeting, but I elected to wait and see if the irritating feeling would just go away with time. I decided to wait patiently until I returned to Washington DC, where I could be examined by my own otolaryngologist, Dr. Morell, the Head of the Otolaryngology Department at the Navy hospital in Bethesda, Maryland, where I also worked.
I had collaborated with Dr. Morell, his predecessors, and other residents and staff physicians for over twenty-six years, conducting clinical research studies of head and neck infections. We studied ear, sinus, and tonsil infections, and the Otolaryngology Clinic had nearly served as my second home for many years. I especially liked to work with resident physicians and help them with their research projects. Some of the studies we did had prevented surgical removal of the tonsils and improved the understanding of many infections. Because of these collaborations, I had the benefit of immediate access to the staff whenever I had any medical problem.
I saw Dr. Morell a few days after my return home. He examined me thoroughly and even performed an endoscopic examination, a test that enables the examiner to look directly inside the throat using a flexible tube as an optical instrument. The instrument not only provides an image for visual inspection and photography, but also enables biopsies, and it can even be used effectively in some minimally invasive surgery. Endoscopic procedures are generally painless and, at worst, associated with mild discomfort. I was happy that Dr. Morell performed the endoscopic examination because it is the most thorough means of establishing a diagnosis.
The examination took about two minutes and confirmed his suspicion that I was again experiencing reflux, a condition for which I had been previously diagnosed and medicated. He changed the acid-reducing medication I was already taking, hoping that it would work better than the old one. I was happy to hear that he did not find any other abnormalities.
Feeling reassured by Dr. Morell’s findings, I followed his recommendations and resumed my busy schedule just as before. I had many things to take care of in a short period of time, as I had been working as an Infectious Diseases Physician in the US Navy for nearly twenty-six years and was approaching my age of retirement at sixty-five. I had no time to waste, for my retirement was only four months away. I had many research projects, numerous reports, and manuscripts to complete and could not afford the time for personal medical problems. Furthermore, the research institute I was associated with was interested in keeping me after my retirement, so I needed to prepare a research proposal to secure funding for continuous support of my research.
The sore throat ameliorated over the following weeks on the new medication, but a strange new sensation emerged – as if a piece of food was stuck in the back of my throat. I tried to cough it out and rinse it and even used my fingers to probe the area, but it did not help. I ignored the bothersome feeling for quite some time because I was very busy and out of town working most of the time, and I simply did not have time to seek medical help. Eventually, though, when the feeling did not subside, I finally went to see my otolaryngologist, Dr. Morell, on a Friday afternoon, arriving in his clinic directly from the airport.
I rarely used the unwritten privilege I had to walk in and ask to be seen right away. But this time, I instinctively felt that what I had might be more serious than reflux. I was very grateful for the privilege that I had to be seen at a moment’s notice and often wondered how much delay happens in diagnosis and treatment of serious medical problems in patients who do not have such an easy access to specialists.
Even though it was late in the day, Dr. Morell saw me right away and performed a very detailed examination. To my surprise and dismay, he this time observed a new finding in the back of my throat which had not been there four weeks earlier. Using an endoscope, he observed a small polyp-like growth about the size of a small corn kernel (eight millimeters). Using a small monitor, I was able to watch as he maneuvered the endoscope and explored the new findings. In spite of what he had found, Dr. Morell did not seem alarmed and managed to do a good job of not raising my concerns by explaining away the new findings as a possible reaction to a foreign body such as a piece of fruit that got stuck in my throat just above the vocal cords. The small growth was behind the valve that closes when we swallow (the epiglottis) – the valve that prevents us from inhaling food into our lungs. I was able to feel the small mass because the valve hit it whenever I swallowed.
Although I was reassured by Dr. Morell’s explanation that what I had was not serious in nature, his explanation did not make complete sense to me at the time because I did not recall having anything stuck in my throat and could not completely understand how a foreign body could induce such a growth so rapidly. When the doctor left the room for a minute, I questioned the junior resident who also observed the growth, asking her if she had ever seen such a foreign body. Even though she said she had not, I accepted Dr. Morell’s explanation. Who was I to question the opinion of the department chief? Although head and neck infections are one of my major research interests, I am not an expert in visualizing foreign bodies in the back of the throat. I also wanted to believe that this was something simple and not anything serious. The thought that it could be cancer did not even occur to me, especially since my surgeon reassured me that this was very unlikely in my case, considering I don’t smoke or drink and am therefore at a low risk of developing throat cancer.
Besides, I was too busy to worry. My oldest daughter was getting married in two weeks, and I could not afford a serious medical problem. There are so many arrangements to be made, I rationalized to myself, and maybe I really do just have some piece of food stuck in my throat. I do tend to eat too fast and might have neglected to chew my food well.
My doctor told me not to worry and advised me to see him again in a month. The irritation did not go away and became even more bothersome, so I decided not to wait a month. I returned to the Otolaryngology Clinic a week later on a Friday afternoon. Even though it was the second day of Passover and a non-working holiday for me, I had an appointment that afternoon at the Eye Clinic at the hospital. Since I was already in the hospital clinics and becoming increasingly annoyed by a worsening strange sensation in my throat (which was probably aggravated by eating matzos), I decided to see my otolaryngologist again. As before, he did not turn me away and repeated his examination. Again, he observed the small mass that seemed to have grown a little larger over the span of a week. I was able to see it myself on the special monitor and agreed with his assessment that it had grown larger in just a week’s time.
This time, the doctor was more aggressive, but he still managed to remain calm and not raise my concerns. He offered to take a small piece of the mass (a biopsy) and send it for pathological examination. He looked for a special new biopsy kit that had just arrived in the clinic – one he had not used before – and after finding it, he attempted to perform the biopsy. However, he ran into some difficulties and needed assistance. Unfortunately, it was after four p.m., and the clinic was already empty. All the nurses, technicians, and other physicians who did work that day had already left for the weekend. He immediately offered an alternative.
“I am going to perform a biopsy on Wednesday of next week,” he said. “This will be under general anesthesia, and you could go home in the afternoon.”
Dr. Morell assured me it was a very minor procedure, and he seemed very unconcerned and underplayed his suspicion that it might be more than just a benign mass.
Now, I faced a dilemma. My daughter’s wedding was in just nine days on the following Sunday. My wife and I were scheduled to fly to the west coast on Thursday and meet all the other members of our family who would also arrive on that day. The only one who would not be present was our youngest daughter, who was spending the second semester of her junior year of college in Cape Town, South Africa. There was too much at stake. We had been working hard to prepare for the upcoming wedding. If something would go wrong with my anesthesia or “minor surgery,” everything would be spoiled. I even thought about my late father, who died from a sudden heart attack just three weeks before my wedding and never experienced the happy occasion. We had wanted to postpone our wedding after his sudden death, but the Rabbi insisted that it should proceed as scheduled, albeit without any celebration or dinner, insisting that it was the Jewish tradition. After that heartbreaking incident, I had always hoped to live long enough to experience my children’s weddings. So now, with this impending “minor surgery,” all I could wonder was, Should I risk it? Should I undergo a potentially risky procedure so close to the wedding? I wanted to live long enough to see more grandchildren and escort my other children to the wedding canopy. All of those thoughts and weighing all the odds for and against postponing the procedure went through my mind in a matter of few minutes.
After much deliberation, I felt that the risks of anesthesia, the minor surgery, and any potential discomfort were worth taking. Dr. Morell assured me that I would be in good shape to take the trip just one day after the biopsy, so I agreed to undergo the excision biopsy in five days.
I called my wife to tell her about the findings and the need for the biopsy. I tried to remain calm and underplay the potential of a serious illness. I also still believed, or wanted to believe, that this was something benign. My doctor was also reassuring me that this was nothing serious and that he had never seen any cancer that looked like the polyp I had. It seemed I was rather successful in not raising my wife’s concerns, something I have always been good at. Even when I was a child, my mother taught me to avoid alarming people with potential bad news, and this was reinforced by years of practicing medicine. My wife tried to dissuade me from undergoing the procedure a day prior to the long trip and just three days before the wedding. She was concerned that I would have pain and discomfort that would detract from my ability to enjoy the happy occasion. In retrospect, she was correct, because I did experience all of these and more. However, I was driven by a gut feeling that this mass shouldn’t be taken lightly – that it should be removed as soon as possible. Who knows? I thought, If it is indeed cancer, who can tell when it will spread to the rest of my body? I thought that even a week might make a difference.
Chapter 2. The Diagnosis
I worked hard during the five days before the biopsy and even drove from Washington DC to New Jersey to deliver a lecture on Monday night. Keeping my work schedule and staying busy helped me deal with the obvious anxiety prior to the procedure. I tried not to worry too much about what was waiting for me.
Early Wednesday morning, I arrived at the hospital for the biopsy. I came in unescorted as I had always done in the past when I had a procedure that did not require hospitalization. After all, this was a “minor procedure,” and there was no need to trouble anyone. I told my wife not to worry about taking me home because one of my coworkers would check me out of the hospital after the procedure. Going through the admission process and putting on the patient gown were not new for me, although, as for anyone in that situation, there is always a tinge of apprehension. For me, it was somewhat difficult facing the fact that here, I was no longer a physician, but just one of the patients. I had my pulse, blood pressure, and temperature taken and waited for about an hour before they were ready to take me to the operating room.
I walked into the familiar preparation room that I had recognized from previous surgeries. It was a large room with about a dozen patient gurneys separated by curtains. Most of the gurneys were occupied by patients waiting for their turns to be wheeled into the operating room. The middle-aged woman across the room from me was waiting for a gynecological surgery, and a young man on my right was in need of knee repair.
Just like any other patient, I felt tense and nervous when I arrived at the waiting area. Am I going to wake up after the anesthesia? I began to shiver a little and asked for a blanket. What made the process of waiting easier was the friendly and upbeat atmosphere in the room created by the smiling personnel. A nurse took my medical history and started an intravenous line. I did not tell her that I was a staff physician. From past experiences, I had learned that the nurses had less trouble starting the infusion when they did not know who I was, which I assumed was because they were more relaxed and less apprehensive that way.
A friendly anesthetist examined me and looked at my throat to gauge the ease of intubating me. I assured him that I had been put to sleep in the past without any difficulty. I asked him, though, to be careful not to break any of my teeth while inserting the laryngoscope into my throat. I was reminded of my own difficulties during my medical training when trying to intubate patients – how, on one occasion, I slightly chipped the front tooth of an unfortunate patient while attempting to place a tube in his larynx.
I was always apprehensive about being intubated and under general anesthesia for surgical procedures. Whenever I needed minor surgery in the past, I always elected to stay awake and undergo the procedure, receiving only local anesthesia. This meant that on some occasions I had to endure more discomfort and even pain when the anesthetic wore off. I had always asked the anesthetist to administer the minimal amount of the general calming medication so that I could follow the progress of the surgery and, if possible, even watch it on a monitoring screen in the operating room. In reality, I rarely remembered details of the procedures, even when the dose of the medication was minimal.
The main reason I disliked being completely put to sleep was that that I did not want to lose control of the situation and did not have complete trust in the anesthetists. This fear was partially based on my own experiences early in my training some forty years earlier, when I witnessed mistakes that took place in the operating room. On one occasion, the anesthetist kept leaving the operating room to manage another patient in a different room, and on a second instance, the anesthetist failed to adequately ventilate a sleeping patient because the ventilation tube was incorrectly placed. Although these errors took place a long time ago and in a different country, I could not help but carry a deep-rooted mistrust of this particular part of medical practice.
My surgeon, accompanied by a young resident physician, stopped by for a few seconds just to say hello, and I was promptly wheeled into the operating room. It was a chilly, shiny, clean room full of surgical equipment and masked, gowned personnel. I was transferred to the operating table and noted that I was shivering again, either because of the scanty hospital robe and the chill in the room, or maybe because of my own anxiety. It was comforting to be covered by a warm blanket. The nurse placed electrocardiogram strips on my chest and connected them to the machine, and I was able to hear my own heartbeat. My blood pressure was taken again, and this time, it was slightly higher. Apparently, I was getting tense. The anesthetist slowly injected an anesthetic into my infusion and placed an oxygen mask on my face. Within seconds, I fell into a deep sleep.
I woke up in the recovery room. A nurse was attending me and taking my blood pressure and other vital signs. I was still very sleepy and confused, but as time passed, I slowly became more awake and oriented. I do not entirely recall the earlier events that occurred in the recovery room, but I learned later that the procedure took longer than expected, and about three hours had passed. As the anesthetic wore off, I started to feel intense pain in my throat and also felt nauseated. After an additional hour, I became more stable and was taken to the observation unit where I was to stay until I was released to go home.
However, even after hours passed, my nausea and pain did not subside sufficiently for me to be sent home. Consequently, my coworker who came later in the afternoon could not take me home. He kept me company for a while, but I decided not to ask him to wait until I felt better and assured him that my wife would come later and take me home. My recovery was taking longer than I had experienced in the past. I called my wife, and she came to get me later in the evening after I felt better.
Fortunately, I had already packed up my bag in preparation for our upcoming trip to Los Angeles the next day. I was uncomfortable and coughed a lot but remained determined to tough it out and leave on time. This was one of the most joyful occasions in my life, and I was not going to allow a “minor procedure” to interfere with the event. Our schedule and itinerary were all calculated and tightly coordinated with the other members of the family, and there was no time for medical problems on that busy agenda.
My busy schedule distracted me from dwelling on the possibility that the biopsy might reveal something significant. A throbbing throat pain and cough kept me up at night, and I had some difficulty in swallowing. These were annoying reminders that I still did not know what the biopsy might reveal. I tried to remain optimistic, reminding myself, Did not the surgeon assure you that what he saw does not look like cancer? Now, calm down.
The next few days were truly happy and joyful. I felt fortunate to walk down the aisle with my daughter, co-signed the traditional wedding contract, and wished my blessing to her and her husband — all privileges my own father had missed. The thought occurred to me that even if I had a terminal illness, at least I was able to experience the wedding of my daughter. There were so many events, special meals, and ceremonies that I was completely consumed and almost forgot about the sword that still hung over my head. But occasionally, it did cross my mind. What will the biopsy show? Oh, how I wish this “thing” did not exist.
While waiting in the long security line at Los Angeles airport for my flight back on Monday morning, I called my surgeon to find out the results of the biopsy. The party was over, and I had to return to the realities of life. I was fortunate to have his direct number and was able to reach him right away. He told me that the results were not yet available and promised to contact the pathology laboratory to obtain them. He said this in his usual optimistic and cheerful voice, which kept me hopeful. However, I was annoyed at the continuous uncertainty. I wished he would have said, “It was just a benign lesion, nothing serious,” but he didn’t. I explained to him that I was about to board a plane for a five-hour flight and that I would arrive in Washington DC after he left his office. I asked him to leave me a message with the results on my answering machine. He promised to do that, and I boarded the plane for the flight.
During the flight (which seemed longer than usual), I tried not to think about the message that was waiting for me. I turned my cell phone on as soon as the plane landed and was rolling to the arrival gate. There was a single message waiting for me. I knew in my heart what it was about. My hands were shaking when I called to retrieve the message – a life or death verdict which would determine my future. I was hoping to hear a reassuring message that all was well. Through the noise and the stewardess’s announcements on the plane’s loudspeaker, I was able to hear my surgeon, and the news was not good or bad – rather, no news at all beyond a discouraging request for me to come to his office first thing in the morning to discuss the biopsy results.
I knew right away that this meant bad news. If the biopsy had not shown anything serious, he would have told me what the diagnosis was. I had skin biopsies taken before, and the dermatologists always left me a message with the benign findings. This was different; I could feel its ominous meaning. Doctors do not leave bad news on the phone. As soon as I deplaned, I listened to the message again, but I could not discern anything more. It was six in the evening, and the thought of waiting at least fourteen more hours seemed too difficult and wrenching. I wanted to know right then and there. I did not have Dr. Morell’s cell phone or home number. I tried to get his home phone number from the phone book and telephone operator. I found three different telephone numbers which could be his, but none had the complete spelling of the first name. In my desperation, I even tried these three numbers, to no avail; no one answered my calls.
Fortunately, I was able to get the phone number of the otolaryngology resident on call for the hospital. I talked to him briefly, explaining my predicament, and asked him to contact my surgeon and ask him to call me with the biopsy results. Waiting in the airport for Dr. Morell’s return call was unnerving. The resident called me back about twenty minutes later to inform me that my surgeon was in a meeting and could not call me back but asked me to come to his office in the morning.
I finally reconciled with the idea that I would have to live with the uncertainty overnight and that I should try to calm my growing anxiety. I was also determined to spare the potential bad news from my wife, who had returned to Washington on an earlier flight that day – at least until I learned more. In retrospect, I understand now why my surgeon could not have left me a telephone message, for this would have constituted an unethical and dangerous practice. In hindsight, I am also grateful that he did not spoil my ability to enjoy my daughter’s wedding, as he had probably learned about the preliminary results much earlier. I wished, however, that I could have been spared the anxious hours that followed until I learned the truth.
Keeping the uncertainty and potential bad news from my wife was difficult. I did my best to hide my anxiety and worry, and it seemed to work well. I could not think about anything else, and my mind was racing and analyzing all potential interpretations of the message, its meaning, and its implications. The mundane tasks of unpacking and reading the mail occupied me, and I excused my silence as being tired after such a busy and eventful weekend.
Falling asleep was made more difficult by jetlag, but when morning came, I rushed to my surgeon’s office. Dr. Morell had to go to the operating room that morning, and his secretary did not know when he would return. “He has a single case this morning and will come back as soon as he finishes in the operating room,” she assured me.
My anxiety was so high that I could not wait any longer. I needed to know, and I decided to find out the results myself. I had visited the pathology laboratories many times before to inquire about my patients’ results, but it felt very different this time. I passed through the long corridors that had the smell of formalin and other chemicals – halls I had wandered many times before, never feeling quite this vulnerable. I knew that dead patients were stored behind some of the closed doors and in the refrigeration chambers, and I was afraid that I would end up in one of those eerie places sometime in the not-so-distant future.
I tried to conceal my anxiety and approached the secretary in a professional, calm manner. “I need to see the results of the biopsy of a patient,” I said. I was afraid that they would not let me see or hear the results if they knew I was inquiring about my own. The secretary was fooled by my subtle trickery, and I was allowed to see the pathology log book. Going down the list of samples from the day of the biopsy was like searching for my name on a death row roster. Following my name, the pathology log book read in no uncertain terms: “mildly differentiated squamous cell carcinoma.”
I could not believe my eyes. Is this possible? Can it be a mistake? In spite of my mind’s hopeful questions, I knew it was not a mistake – right here in front of me in black and white, my own death sentence. Suddenly, in that very instant, my whole world changed. I saw in front of me the unavoidable end. Strangely enough, I had always had a sense of invulnerability. I had been exposed to several life-threatening situations in the past and had always survived. I had never been deterred from taking physical risks, especially as a young man. In my twenties, I had been injured several times in motorcycle accidents, had been able to avoid hitting deer and other potential serious car accidents by quick reactions, and had participated as a medical corps physician in two wars when I lived in Israel, wounded in one of them. Yet, I had survived. I always felt that I had a lucky star. Has my luck finally run out? I wondered now, helplessly.
I had to accept for the first time that I am not invincible and that life has an end. I knew those things before, but I always trusted my body to stay healthy and avoid serious illness. I faced life-threatening situations when I participated as a medical officer at the ages of twenty-five and thirty-two in two wars the Six Days and Yom Kippur Wars. At those times, I felt I was simply not ready yet to die – I had not yet experienced life to its fullest, and there was so much more I wanted to do in life. During the Yom Kippur War, I was already the father of two young children and did not want to abandon them by succumbing to death. However, as I grew older, I slowly accepted the inevitability of illness and my ultimate mortality but hoped that they would occur in the distant future. I also felt that should death become inevitable, I could look back on my life and feel that I had done and experienced much of what I set out to do. Furthermore, unlike my father who died when my sister was only thirteen years old, all my children were adults, and all but one had finished their education and were almost completely independent.
My health until that moment had been generally good, and despite my age, I was in very good shape. I always seemed to recover or cope well with medical problems, and although I had several illnesses, they all turned out to be not so serious. But this? This was different. This was “mildly differentiated squamous cell carcinoma.” At that minute, I thought, This is it. This time, there is no chance that my illness will just go away. My trust in my body to stay healthy and fit was lost.
On principle, I also had great difficulty dealing with the cancer diagnosis. I believed (wrongly, of course) that cancer was a lost cause, and once you have it, there is no way out. Even though I was interested in the research aspects of cancer, I had elected not to specialize in oncology. I was discontented with the futility of caring for patients suffering from cancer and chose instead to become a pediatrician and specialize in infectious diseases. Cancer is rarer in children, and most infectious diseases (especially in children) are curable. I had an inner prejudice about patients with cancer, feeling that they had an incurable illness and were bound to die – and soon. Oncology seemed like a doomed effort. During my years in medical school, I noticed that I was protecting myself from getting emotionally too close to patients with cancer so as not to feel pain when they passed away. In retrospect, forty years later, I realize these assertions are incorrect, because medicine has progressed so much since then. However, my previous superstitions were deeply imbedded in my mind and emerged at that minute when I read those haunting words: Mildly differentiated squamous cell carcinoma.
The only consolation I felt at that time was that I would be able to know ahead of time the cause of my death. In a strange way, I was expecting to die in a similar manner to my father, who died when he turned fifty-nine from a sudden heart attack. When I had my fifty-ninth birthday, I felt lucky that I had been able to pass that milestone. Unlike my father, I was more conscientious about my health, and I did not smoke like he insisted on doing. I also did not consume any alcoholic beverages. I felt that I might be more fortunate than my father who had died suddenly because I would have the opportunity to say goodbye to my family and friends. I had always felt that I had been granted an extension of my life when I survived my injuries from the Yom Kippur War. In that war, I was wounded in my leg by shrapnel, sustained an injury to my left eye, and fractured my orbit from the impact of an explosion which thrust me to the ground. I kept working and caring for other wounded soldiers for twenty more hours until I was evacuated to a hospital. I was lucky to have lived for many more years and more fortunate than some of my friends and many soldiers who had died during that war. I always felt I had been blessed with an extension of my life from the moment of my war injury and that all the years that followed were a bonus I was fortunate to have. All of these thoughts flooded my mind as I read the pathology report.
I asserted my stamina and behaved as if I were dealing with the results of someone else’s biopsy and asked the secretary to direct me to the office of the pathologist who analyzed the biopsy. I was still in disbelief and, on some level, still hoping to hear from the pathologist that it was all a huge mistake. I also did not completely believe the results and wanted to look at the specimens with my own eyes. I needed a confirmation that this was true.
I was directed to the pathologist’s office. It was a very strange situation for me. I have often visited the pathology laboratory to view my patient’s pathological specimens. I believed in what I was taught during my medical training: there is no substitute to directly observing. This time, I was not asking to directly observe a patient’s pathological slide, but my own.
I knocked on the door of the pathologist’s office and walked in. It was a neatly set room with a large table at the center. A large microscope was situated in the middle of the table, and numerous specimen slides were scattered around it. The room had a strange odor of preservatives that made me slightly dizzy. The pathologist, a middle-aged woman, looked very professional and organized. “I am Dr. Brook from the Infectious Diseases Department, and I have just learned that the biopsy taken from my throat five days ago was found positive for cancer. Would you be able to review the specimen with me?” I asked. She did not flinch or show any emotion and willingly and politely agreed. We studied the pathological slides under the microscope together, and she explained the unique morphology of the cancer cells and how the diagnosis was made. Even though this was me and my life that we were talking about and I was looking at my potential killer, I amazingly was able to maintain my composure and act as if I was looking and discussing the results of a patient we both felt distant from – some stranger. However, it became clearer to me that there was no way out this time. This was truly a malignant tumor. I saw it with my own eyes this time.
Even though I had often studied pathological specimens of infectious processes, I had rarely observed cancer specimens since medical school. I recollected those as I viewed mine. This looked very familiar to me as I remembered the features of squamous cell carcinoma. Pathology was one of my favorite subjects in medical school, yet I always felt that I would never be affected by cancer. Nevertheless, it found me somehow. As I looked down into the slides and observed the cancer cells, I felt like I was gazing straight into the eyes of my nemesis. This is going to kill me, I thought.
The pathologist acted very professionally, and even though she had no comforting words, she eventually softened up and expressed her sorrow as being the one who had to deliver the bad news. I questioned her as to whether the whole tumor had been removed, and she assured me that it seemed to have been totally taken out. But she also cautioned me that even though the specimen she studied was surrounded by normal tissue, that layer was very thin. This meant that there was still a chance that the entire tumor had not been removed. I stoically took it all in and tried to express my feelings with a bit of dark humor. “At least I know what I will die of,” I said to the pathologist.
With these parting words, I left her office carrying a copy of the pathology report and proceeded to my surgeon’s office.
Chapter 3. Getting Started
I staggered back to the Otolaryngology Clinic, still shell shocked and bewildered. When I arrived there, my surgeon was already back in his office. His secretary, who had been my acquaintance for many years and had always helped me find him or another coworker, waved me in. It was a regular military doctor’s office with his family pictures on his table and his framed medical degrees and professional and military awards hanging on the walls. There was a large model of a battleship that Dr. Morell must have served on proudly placed on a side table.
Dr. Morell was working on his computer when I knocked on the door. He immediately stopped what he was doing and gave me his full attention. I told him that I had already learned about the diagnosis, but he apparently had already learned about my visit to the Pathology Laboratory. The pathologist must have been alarmed by my last comment and called him. He explained the pathological findings to me and why he was able to remove only a minimal amount of tissue around the tumor. “It was difficult,” he said, “to take out more tissue because the cancer was only a few millimeters away from the vertebral column. It is quite possible,” he stressed, “that you are already cured. However, you need to receive radiation now, which is often the only treatment of this cancer. Even if some cancer cells were left, it will eradicate them.”
Dr. Morell told me in calm and laid back tone how good my prognosis was because the cancer was detected at a very early stage, but he could not be specific about percentages of survival. Throughout the conversation, he was relaxed and seemed unconcerned and exhibited an upbeat spirit of optimism and experience, which helped me to better cope with the situation. He outlined my treatment plan, which would include only a course of irradiation to my neck, after which I would be followed in the Otolaryngology Clinic by the Tumor Board, monthly for the first year and at greater intervals later. They would be watching my recovery and making sure that I had no local recurrence or spread of the cancer to distant sites. That Board, a team of specialists in oncology, radiation oncology, endocrinology, dentistry, and otolaryngology, sees patients with cancer once a month. They would review my case and treatment plan later that week, after first reviewing the pathological and surgical reports, as well as the CT (computed tomography) and PET (positron emission tomography) scans. He had already ordered these scans to be done within the following twenty-four hours. The Board subsequently approved the plan of action he outlined to me.
Everything looked quite organized and in control, and this was reassuring. Without further delay, he told me that he had already talked about me to the radiation oncology specialists who were waiting to see me in their clinic. He personally escorted me downstairs to the clinic. As we were taking the elevator down into the basement, he told me that the pathologist had told him what I had said – that I now know what I would die of. His reassuring and surprising response was, “I am certain that this cancer will not kill you. You still need to take care of your health so that no other illness will cause it.” It was good to hear that answer. It also reminded me that there were many other potential health hazards which I needed to watch for. Events in the future would prove how correct he was.
I realized that my surgeon’s attitude was optimistic and positive because he tended to see the cup as half full and not half empty. In retrospect, I realized that his kind of attitude might have been a factor in his earlier lack of concern about the small lesion he had observed. This was probably why he was willing to wait a month and observe its progress rather than biopsy it right away, discounting the potential that it was malignant. On the other hand, I thought that he might have suspected cancer but decided not to raise my concerns and spare me the anxiety associated with sharing the potentials of that findings. I realized at that minute that I would always like to know the truth and my odds rather than having it concealed or painted in rosy colors. I asked him to promise me to always share the truth with me rather than hide it and protect me from it. He promised he would. He kept his promise and his door open for me in the ensuing months, just as he had done in the past, and he always found time to quell my anxieties and worries, examining me when needed without any delay.
The Radiation Oncology Clinic was situated at the basement of the hospital, probably because it contained heavy radiation emitting and monitoring equipment and thus requiring thick lead walls to protect the staff. Two radiation oncologists were waiting for us when we arrived at their clinic, an attending physician and a senior resident. They were friendly and smiling when they told me, “We were expecting you, Dr. Brook.”
The senior resident reminded me by his looks of a good friend from medical school who now headed the Department of Oncology at a major medical center in Israel. They both had red hair, and similar facial features and mannerisms. I immediately felt a liking and connection to that resident who was to manage my case. It is strange, I thought, how an irrational familiarity with superficial features sets my attitude and opinion of individuals.
I was impressed and reassured by the radiation oncologists’ self-confidence, knowledge, expertise and concern for my recovery. They outlined the treatment plan they had set for me, which included a series of thirty radiation sessions that would be given each week day for six consecutive weeks. They explained that they had new equipment and techniques that target the area of the tumor and spare the surrounding areas from excessive radiation. It was called “intensity modulated radiation therapy.” I was wondering why they skipped the weekend days if the goal was to deliver a certain radiation dose to effectively kill the tumor. They assured me that it was okay to irradiate for only five days a week. I skeptically thought that this was just an excuse to close the facility over the weekend. I wanted to be treated every day so that the cancer would be eradicated as soon as possible. However, as I started to receive radiation and the side effects accumulated, I began to look forward to those two days of rest where some of those adverse affects ameliorated.
They outlined the side effects I would experience as a consequence of the radiation, including immediate and long-term. The almost immediate ones were change in taste, inflammation of the mouth mucosa with potential secondary yeast infection, skin irritation and hair loss at the area of irradiation, and tiredness. The long-term ones were thyroid hormone deficiency, scarring of the deeper neck tissues and muscles that would induce neck stiffness, damage to my nerves in the spinal cord and to the bones and roots of my teeth in the lower jaw, and the potential of development of malignancy. Although I was hearing about these complications, I was too overwhelmed and unable to appreciate their real meaning and severity. Only when I developed them did I truly understand their impact. Furthermore, at that time all of these seemed minuscule risks when compared to the task at hand – ridding me of the remaining cancer.
When I asked, “What are my chances for survival?” they gave varying estimates.
“Unfortunately,” they explained, “most patients included in the published studies were diagnosed late, after the tumor had already reached a substantial size and had spread systemically. The later the diagnosis is made, the dimmer the outcome. The five years survival in advanced cases was dismal, only about 20 percent. However,” they assured me, “your cancer was discovered at a very early stage, and those statistics may not apply to you. You have the best survival chance for patients with this type of malignancy. In those where the tumor is diagnosed and treated early, the chance of survival is much better and may reach 80 percent. “However,” they stressed, “please understand that this is an unpredictable and difficult to treat type of cancer and has a relative high mortality rate. It does not respond well to chemotherapy, and very little improvement has occurred in the past three decades in both medical and surgical treatment. Please remember” they told me, “this kind of tumor generally spreads first to the local lymph glands, where it can stay checked for a while and only later spreads systemically – mostly to the lungs and liver. There is a chance of aborting the spread by early removal and treatment. On the other hand, there is always the possibility that the ‘ginny has already got out of the box’ and the cancer had spread. Unfortunately, there is no certain way to exclude that possibility, as even the most currently available sophisticated tests can not detect a very early spread.”
I wanted to start receiving radiation therapy right away. I was afraid that any delay would allow the cancer to re-grow and spread. My surgeon’s assertion that he “might” have removed all of it was not reassuring enough for me. My wife and I were planning to travel to South Africa the following week for two weeks. This trip was both professional and personal. I was invited to give a series of lectures in the major cities, and that would have also provided us an opportunity to visit our daughter, who was studying there, and a chance to tour the country and see some of the animal nature reserves. We had been planning that trip for months. I asked the radiation oncologists if a delay in starting the radiation treatment was possible, and they assured me that it would not pose a problem. However, that would mean that treatment would be delayed by three weeks. After I briefly considered the matter, I decided to cancel the trip and start treatment without any delay. No trip is worth giving up the chance of survival. I was disappointed that my treatment was only going to start a week later, as they needed that time to plan and calculate the doses and prepare a “mask” that fits my face and allows them to deliver an accurate dose of radiation.
I realized at that time that I had not yet shared the news with my wife and children, and it occurred to me that they should also be informed about what was going to happen. The radiation oncologists agreed to discuss my diagnosis and treatment with my children who were all residing in other cities. It was the reality of living in such a large country, as compared to life in small Israel where all family members typically live close to each other. After listening to the logic and potential prospects of success of the planned treatment, I wanted to share this with my family and alleviate their expected concerns and fears once I broke the news to them.
I left the Radiation Oncology Clinic in a better mood than I had before, feeling that I was in the good hands of a team of doctors who had my best interests in mind and knew how to handle it. However, there was still so much uncertainty about the future – about what kind I would have, and even how long it would be.
After leaving the clinic I broke the news to the Commanding Officer of the research institute where I worked and the head of my department. It was easier for me to do that than to inform my family. I also knew that it was my duty being in the military to let them know about my medical condition. The Commanding Officer is the officer everyone in the institute is under, and he or she has to be informed about any major issue pertaining to his personnel. Both were very supportive and understanding and promised to support me in any possible way. Ironically, that research institute is dedicated to studying the adverse effects of nuclear radiation – a topic I had researched for the past twenty-four years. I worked so hard to save people from the adverse effects of radiation, and now I was going to experience many of those untoward side effects myself.
The CT scan was completed that afternoon, and the PET scan was done the next day. These were sensitive tests that could detect cancer growth in the body. The CT is made of multiple X-rays that scan an area and can visualize abnormal growth, and the PET scan can observe a local increase in the consumption of sugar, which can indicate the presence of malignancy. However, neither test can detect lesions smaller than two centimeters, definitely unable to sense the presence of early cancer. Even though both tests were negative, I knew this did not mean I was necessarily tumor-free.
The next task I faced was the hardest. I had to tell everything to my wife. I decided to keep it from her for another night. I knew that our world would be entirely different afterwards, and I wanted to spare her a night of agony and give her another evening of normality. It was not easy to keep it from her, especially because she was still planning the upcoming trip overseas. I tried to distract her from spending too much time on planning the trip. She kept reading about the places we were going to visit and talking to me about the hotels where we were to stay. I knew that it was all futile and that we were not going to take the trip. I kept wondered how to best break the news to her.
We had a brush with cancer a year earlier when a suspicious mammogram brought up the possibility of breast cancer in my wife. It was a very traumatic and emotionally draining experience for me. I felt that my whole world was falling apart until a biopsy showed no cancer. I had not yet completely recovered emotionally from that traumatic experience, and now we were going to be thrust into one where I was the sick one. And this time, it was not just a cancer scare, but a reality. How would my wife cope with it?
I was also flooded by thoughts of despair, helplessness, and depression knowing I now had to deal with cancer. However, I had so many things to do, and I felt an inner sense of hope that I could do something proactive that would eradicate the rest of the cancer. Knowing this helped me push aside the negative thoughts. These returned, however, to haunt me again and again.
Early the next morning, I decided to tell my wife what had happened. I thought the morning would be a better time to deal with bad news than the evening. The morning was better time I thought because she was not tired and could reason with clarity and have the whole day to deal with the news, hopefully resolving the issues by nightfall so as not to miss a night’s sleep. Even though I knew I had to finally deliver the bad news, I was not sure when, exactly, I should do it. I kept postponing it again and again during the morning. I wanted her to eat first and get dressed, but time was running out. She was making her final preparation to leave the house for work and taking out a few items from the walk-in closet when I approached her.
The support, information, and treatment plan I obtained on the previous day made me stronger and more ready to support her and provide her with an optimistic outlook and plan of action. I kept all my fears and worries about the uncertainties to myself. I delivered the bad news as tactfully as I could. I started by saying “ I am afraid that we may not be able to travel to South Africa because of a new medical problem I had developed.“ I than proceeded to explain why. She was stunned and speechless. She opened her mouth in disbelief and could not utter a word for almost twenty seconds. I proceeded immediately to tell her that I may already be cured, but just to be sure that there is no cancer left, I was going to receive radiation treatments. I also informed her that my CT scan was negative and that to hear more details, we would be meeting the radiation oncologists that afternoon. It seemed to have worked, and although my wife was initially shaken, she seemed to absorb the news and started processing and adjusting to the new reality we were facing.
We met the radiation oncologists later on that day. They repeated the reassuring well-structured explanations they gave me on the previous day. My confidence in them was also comforting to my wife, and we left the clinic feeling we had a plan of action that may lead to recovery.
The next task was to inform our children. This was difficult, as we could not do it in person but had to do it by phone. We did it as delicately as possible, reassuring them of the good prognosis and outlining the treatment plan. They accepted the news with great concern. Fortunately, they all had full lives that kept them busy. We did not get in touch right away with my oldest daughter, who was overseas for her honeymoon, but waited for her return, for we did not want to spoil her happiness. What was very helpful was that our children had the opportunity to talk with the radiation oncologists, who provided them with detailed information and answered all their questions and concerns. I was very grateful to the radiation oncologists for providing their services to all my family members and assisting us in coping with these uncharted waters.
Informing our daughter in South Africa was more difficult, especially as we were about to visit her. It was hard to ascertain her reaction because she was so far away. She cried when she heard the news. After we succeeded in calming her down a little, she had many questions and was very upset and distraught. It took some time to explain to her the situation and try to leave her less distressed. We had, of course, to tell her that we were not going to visit her, which was also very disappointing to her.
At that time, I had to decide if I would like to share my diagnosis and condition with other family members, friends, neighbors, and colleagues. I decided to keep it private and share it only with my wife and children and those colleagues who needed to know. I asked my wife and children to respect my choice. Some of them tried to convince me to change my mind because silence imposes an additional burden upon them, where they cannot share their anxieties and worries with others. Still, though, they all promised to comply with my request, even though some found it hard. Our daughter, who was in South Africa at that time and had no family support, asked my permission to confide with some close friends, to which I agreed. I was trying to understand myself why I wanted it that way and came out with several reasons. One was that I did not want to show my vulnerability and weakness and be pitied by others. I felt that my illness was my own private issue and that it was my prerogative to determine whom I want to share it with.
The other reason I wanted to keep it private was because I did not want to be stigmatized and discriminated against. I knew that sick people – especially those with potentially terminal illness – are less able to be competitive in society and are intentionally or unintentionally discriminated against. I experienced the painful stigmatization some time later when a close relative expressed fear that that I will “infect” her infant with cancer if I share my spoon with her.
I was also afraid that otherwise compassionate friends and acquaintances might distance themselves from me to protect themselves from the inevitable – knowing that they may lose me to my affliction with a malignant cancer. I based this fear on my own prejudices and my own reactions to other sick individuals, although whenever I had to face terminal illness in friends I never acted that way. When two of my close friends were diagnosed with cancer, I kept visiting and supporting them all the way. Still, I just felt that I could better cope with my situation if I kept it private until I was strong enough to reveal it.
I had about a week before the radiation treatment started. I did not change my schedule and worked as planned. I even traveled out of town to deliver two lectures. I did, however, cancel all other activities for the upcoming six weeks, including the trip to South Africa. I felt bad about doing that, especially at the last minute, because I prided myself as a professional who always fulfilled his commitments and obligations. Bad weather or illnesses were rarely a cause for cancellation. This time, though, it was all different.
We canceled all of our reservations in South Africa and, to our surprise, the hotel managers in all these places returned our deposits when they understood why we had to cancel at the last minute. It was a gesture that warmed my heart and made me feel that people we have never met really do care.
During the week preceding the radiation treatment, I had a series of appointments in various clinics where my medical and dental conditions were checked to form a baseline prior to treatment. These checkups included a dentist, a dental hygienist, and a dietician. When I broke the news to my internist, he did not utter a word until he gave me a big supportive hug. It felt so good to know that he deeply cared for me beyond our professional realm. I had never been hugged by a medical caregiver or given a hug to a patient. His embrace moved me and made me feel that I was surrounded by caregivers who truly appreciated my pain and distress and shared in my personal tragedy. I also contacted the social worker I had seen several years ago. I felt I needed to talk to her with and without my wife so that we could better cope with this life-shaking event and its repercussions. From my past experience with her, I knew that her assistance would be invaluable. This was a very wise decision, because we needed and benefited from her caring, compassionate, and wise advice in the following months and years. She helped us cope with the ups and downs and the fears and anxieties that followed; she was a constant source of help and support. With her assistance, I actually became more resilient.
I went to the Radiation Oncology Clinic during that week to have a special fenestrated mask prepared that snugly fit my face. That mask, specially molded for me, was to be worn by me every time I received radiation. It prevented me from moving my head and neck during the radiation session and insured the precise delivery of the radiation dose to the tumor site. It was prepared by softening the mask in hot water, placing it on my face for a few minutes while it was cooling off, and leaving it on my face until it solidified. It resembled the fencing mask I used to wear when I practiced that sport during my student days. This mask bore my name and was there waiting for me each time I went in for radiation. They told me when they prepared the mask that I could take it with me at the end of therapy as a souvenir; however, when I finally finished the long and grueling treatment, I declined the offer. I did not want to possess anything that would remind me of that experience.
After completing the mask, the technicians etched a small black point in the middle of my chest. This was done to enable them to direct the radiation beam in an exact fashion. I was tattooed for life – literally.
A few months later, I checked into an airport hotel in Charlotte, North Carolina, on a rainy night. After taking a few steps into the hotel’s lobby, I slipped and fell on the floor. The guests’ umbrellas had dripped onto it, making it a slippery sheen. I approached the front desk to complain about my injury and to request they promptly dry the floor to avoid further accidents, and the hotel manger came to talk to me. He was an elderly man, skinny and tall. He apologized and suggested that I file a form with the hotel insurance company for my injured hand. After talking to him for a few minutes, I learned that he had experienced a type of malignancy similar to mine and had also been treated with radiation. I asked him if he had also received a tattoo on his chest. He untied his tie and unbuttoned his shirt and showed me the same mark. I felt immediate camaraderie with him, realizing that there must be many survivors like him bearing a similar “mark of Cain” as a souvenir. After all, we both shared the same turbulence and experiences. I refrained from following up on my formal complaint or filling the insurance forms simply because I did not want to get a fellow survivor in any trouble. He had been through enough already, as I knew firsthand all too well.
Chapter 4. Getting Irradiation.
The beginning day of the radiation series finally came, and I arrived at the clinic early in the morning I used the Metro train instead of driving my car, as I was not sure how I would feel afterwards. I avoided driving throughout the course of my radiation treatment, and for weeks later, because I felt very insecure when I tried to drive after treatment, constantly fearing I would have an accident. The clinic was located in the hospital basement, staffed by very efficient and friendly personnel. When I walked in and sat waiting for my turn, I noticed there were a few other patients waiting with me. They all obviously had cancer and shared similar treatment regimens. Some looked very healthy and fit, but most looked ill and worn out – as if they had endured much pain and suffering.