We were at St. John’s Hospital for a routine check-up when a doctor pointed to my neck and said “I would have that bump checked if I were you”. At that moment a purple light seemed to illuminate the room and the particular silence we experience before lightening strikes knocked us about, and when Robin and I looked at each other, we knew something serious had just happened. Indeed, there was a little lump on my neck, and in spite of our foreboding feelings we decided to not freak out but deal with it the proper way.
It was a bright September afternoon in 2003 when we drove home, silent like people who have just been touched by an unspeakable catastrophe. Robin, my beautiful girlfriend and I live in a pleasant house with a wild and wonderful garden in Culver City, Los Angeles. Robin is a muscular therapist, and I, having worked with computers for a long time, was working at a game company as an environment artist. We both made reasonable money for a reasonable life. Luckily we had health insurance, because of my gainful employment. Otherwise, I would not be alive to write this.
At this time, Robin and I were together for 12 years, with a lot of ups and downs, with all the trouble that two independent minds in the same bed will get into. While we were driving home I was looking at the houses in the late afternoon sun, the palm trees, the endless stream of cars, and I was wondering if this was the last time I would be seeing the adorable, crazy splendor of this little spec of matter in the universe. It was time to make plans.
First I was going to consult a dentist to see if there was an infection somewhere that could have resulted in a swollen lymph node, to hopefully eliminate the possibility of cancer. That was not so. The dentist didn’t find anything suspicious, and my next appointment was with the famous Dr. Castro at UCLA, one of the world experts on Squamous Head and Neck cancer.
Dr. Castro, I found out later, cured Bob Guccioni, the owner of Penthouse Magazine. The few times we met Dr. Castro he was usually in a rush between operations, and was either snapping his rubber gloves on or taking them off. I had the feeling Dr. Castro was overworked, maybe because he was so good, but I also felt that it would be only a very limited amount of time he would dedicate to me. He looked at my lump. The lump was maybe the size of a peanut, but did not move under the skin, and we, Dr. Castro included, were all pretty sure it was cancer. A biopsy needed to be done to verify this diagnosis.
Dr. Castro ordered two “very” young Japanese interns, who appeared from an elevator in the hall where we were located, to execute the biopsy. They obviously were not very sure how to go about it and nervously giggled debating where to puncture me. Finally they got two biopsies, disappeared, and after waiting for half an hour we got the expected diagnosis: Squamous Head and Neck Cancer!
The next task at hand was to explore the rest of my head and neck for more tumors. This is when the first relatively grave mistake happened because Dr. Castro was so sure he knew where the primary tumor had to be. Extensive exploratory surgery was executed but over a dozen biopsies showed no primary cancer anywhere.
The mistake, of course, was to do the investigative surgery first, and then do a Petscan, because the Petscan that we did next showed mainly the results of his biopsies, and destroyed all hope to find the primary tumor. However, it taught me to scrutinize every medical procedure with eagle eyes because I have only one patient, and that is “I”, while the doctor has hundreds. Something that would be regarded as a clerical error could make my life miserable forever. (They even cut off the wrong leg at times!!)
Now it was time for the big meeting with Dr. Castro to plan the strategy for the treatment. Dr. Castro said: “We will, of course, have to remove the visible tumor and most of the lymph nodes in the neighborhood. We also might have to remove some of your neck muscle tissue which might limit your ability to move your head later.” He sounded like this was a plan and a cure, and that is the way it would be done. Who was I to argue with him at this juncture. I asked: “How do you calculate my chances of survival for the next five years?” He closed his office door and I realized this was not going to sound good.
“Since we didn’t find your primary tumor your survival chance is down to 20% from 40% if we had found it.” I have to admit that this terrifying judgment didn’t have very much effect in my head. I didn’t freak out. I didn’t become despondent or hysterical. I just sat there, and to my own surprise, calmly inquired: “Well, what are we going to do now?”
Following my motto, if you don’t have a chance, use it.
I realized some of my tissue had become enemy territory. Conventional chemotherapy poisons you to a point that the tumors, being more sensitive to cytotoxins, will shrink and disappear to the naked eye. We are not exactly sure what happens on the cellular level, as far as I understand, and if single cancer cells survive the chemo onslaught is impossible to detect. Radiation, which actually burns the tissue effectively, destroys cancer cells and also all the neighboring healthy cells – but am assured they are microscopically gone. There seems to be a certain risk in this procedure because the radiation itself might cause gene mutation in cells and this way creates another cancer. ( ) This is why Dr. Castro preferred surgery – as a relatively clean way to remove the tumor(s), and when it has been cut out the tumor is definitely gone for good. Modern surgery techniques invest great effort in preventing the causation of metastases by cutting into the tumor, with the risk of tumor cells being spilled into the bloodstream. The general rule, nevertheless, is to cut into the healthy tissue, which means the surgeon cuts as far around the tumor as is possible just to make sure they get every cancerous cell. In my case, this would have meant removing the tumor, removing most of my lymph nodes (probably only on the left cancerous side), and as Dr. Castro explained, part of the neck muscle. It is called a neck resection, and can be either done on one side or on both.
Head and neck cancer is some type of skin cancer, to be found on the mucus membranes, inside your head. As I understand, early detection, while you are dealing with the primary tumor, enormously increases your chances for a successful therapy. On the other hand, if the tumor that is discovered is already in metastasis, then you skip from Cancer Stage I, right away to Cancer Stage IV. Where there is one metastasis there might be many more. This is why Head and Neck Cancer, when it first gets discovered in Stage IV, can be so virulently deadly. An additional problem is that this cancer mutates and recurrences are difficult to treat this way.
The terrible fate of people with Head and Neck Cancer became very visible to me when I saw pictures of an old friend of mine who had died of Head and Neck Cancer. You could see how, through the years, they kept cutting off more and more of his face. You might remember Roger Ebert, who also had Head and Neck; his last public appearance showed him with what seemed like a missing jaw, and an inability to speak. One day, at another doctor’s office, the nurses tried to be nice to me and told me what great prosthesis’s were available these days, if part of your face was missing. “You can hardly tell the difference!” I was horrified. They meant so well.
My chances of survival for the next five years were 20%. That means 80 out of 100 people with this disease die. And an 80% certainty of death sounds like a protracted death sentence. Once you have been made aware of your chances the world doesn’t look quite the same as it did before. You look at friends, children, trees, houses and automobiles with a certain sense of melancholia because you have no idea how long you will be with them. But, as Mark Twain says, “there are liars, there are goddamn liars, and there are statisticians”. I realized I had to do everything to become part of the 20% who survived. I understand that a lot of people take a horrible diagnosis like this personal and wonder why God doesn’t love them anymore, or their good luck has run out. This usually results in deep depressions, with the great writing in the sky: “Why Me”? In my life I went through many long episodes of self-pity and now am familiar enough with such states that at least they didn’t hinder my fight for survival.
Of course, the world does not only seem to be different after your diagnosis, it also factually is. In the morning I wasn’t leaving to go to work anymore. My calendar was devoted to doctor and hospital visits, filling out forms and papers, which I probably could have never organized if I had not had the good fortune to live with my girlfriend, Robin, who spent endless hours on the paperwork and on the phone, driving me to and from the hospitals as if she had an academic degree in helping. Everything that had not to do with cancer fell by the wayside.
The time not spent with doctors and hospitals I spent in front of the computer trying to learn everything about my affliction. Pub-Med on the internet, Wikipedia, and a few other such sites were very helpful. Since the internet is open to everybody you have to be very careful how you scrutinize the informations that you are getting. There are more cancer cures on the internet than you can shake a stick at. I have checked them all and will get back to this in a later chapter.
One of the more important questions that everybody with cancer is confronted with is -- how do I behave in public? Will I keep the knowledge of my cancer between my doctors, my closest family, or do I openly communicate about it with everybody? The secretive method requires, in the end, a lot of lying, finally a confession, and ends in a general state of disinformation. On the other hand, as long as you can keep it secret, people will not treat you like you have an infectious disease, and you won’t be losing most of your friends who just get tired of the “C” word, the hospital talk, and the chemical smell that is attached to it all. Once you make it public, for which the internet is a great instrument, you have no need for lying about your state of mind and hiding your state of health. You don’t have to explain hospital visits away as desert retreats or doctor visits as another “Jewish” holiday. If you explain your situation as honest and open as you can you create at least a space where everybody is informed directly by you, and you also bypass all the rumor mills. In case you have a lot of good friends who do not run away from you, you might, after awhile, wish they had, because one of the most common experiences of a cancer patient is the myriads of cures you suddenly learn about and that you should better follow if you don’t want to die. Every one of your friends knows somebody who got cured from cancer by various miracle cures.
I went for the public option. Most of my friends and acquaintances have email and I sent the following email to everybody:
To all my friends:
Last week I was told what nobody ever wants to hear. I have been diagnosed with "Squamous cell carcinoma of the head and neck".
Three weeks ago a doctor had discovered a lump on my neck and after diagnostically discarding other causes like infections/dental problems a fine needle biopsy revealed a cancerous lymphnode. As I understand "Squamous cell carcinoma" is a cancer with a very good prognosis similar to other skin-cancers, but the head and neck variety grows inside of you and grows usually undetected until it metastasizes. When it metastasizes it does so first in the lymph-nodes of the neck and the chances of survival -- regardless what treatment you go for -- turn to a mean average of three years.
I had other plans!
Now I will have to devote my life to beat the odds and I'm determined to do so.
My doctor at UCLA seems to be one of the experts for this kind of cancer.
I will keep you posted and wish I had better news.
I'm not quite as heroic as Tim Leary to welcome death yet as the great challenge of my life, but I also have
more of a chance to beat it and will try to welcome death only when it becomes unavoidable.
Yeah, sometimes life sucks -- but consider the alternatives.
I hope you hear from me soon and often.
Brummbaer
The response was overwhelmingly positive. Almost everybody wrote back immediately. They all had encouraging stories, like a great-grandfather with cancer who lived to 98 years old.
One of the emails went to my doctor friend, Asti, in Switzerland. Asti and I have been friends since the early 70’s when she was a student of medicine. She instantly took a holiday and arrived a week later in Los Angeles to be my second opinion.
Chapter 2
The holy Trinity of Cancer Therapies
We don’t live in a big house but have enough room to comfortably accommodate a guest. Asti immediately sprang into action, then rifled through various medical reports containing the diagnosis: a cancerous lymph node on the right side of the neck without further metastases in any part of the body. She wrote a summary and sent it as an email to at least half a dozen experts. She claimed discrepancies between the European and the American therapies.
As I mentioned before cancer therapy has three basic strategies: surgery, chemo, and radiation therapy. Every cancer patient has to visit a doctor from each discipline. I started with a surgeon because, as I understand, surgery is the standard treatment for Head and Neck Cancer in America. Now I still hadn’t seen a radiologist nor a chemotherapist. We decided to make an appointment with the Department of Radiology at UCLA since this was the hospital where my surgery was planned. As everybody knows who has been or visited a hospital it is a unique experience.
The first problem you have to solve is to find a parking place in a reasonable distance from the hospital or you will be forced to pay astronomical fees for a parking spot in the hospital parking lot. Once you are past that and found the department you are visiting you have to register with somebody at a computer terminal, and then you sit down and wait until the friendly roly-poly African-American, behind the computer, tells you that you can progress now to another waiting room behind the door from where the nurse is calling your name. You leave the room with so many people with so many different afflictions that are waiting and passing time, and follow the nurse to a tiny little room with some medical illustrations on the wall. There, you sit and wait again. And that is the standard procedure. I remember curiously watching the other patients, trying to detect what kind of cancer they might have, and if they were people with the same cancer I had. It is a peculiar way to look at humans.
Finally we were being processed to go to the basement where the Radiation Department is located and heard the following reassuring sentence by one of the head nurses which went something like this: “Don’t worry about the cost, or the insurance. It’s cancer. They always pay for cancer”.
I felt I had arrived at some new place where people were actually acting human. Like in “humane”: people with a moral compass and principles. Besides the fact that this all turned out to be wrong, it really felt good to me at the time.
Then we went to the basement – the Radiology Department. A mask of my face was made which was aligned by marking me with three little tattooed dots on my neck. The perfect fit of the mask was essential to force my head into the correct position for a targeted radiation. It felt like an initiation into a strange cult when I saw my face protruding from a wide and stretched mask made of a ghostly, white fibrous material. Once we were done with this procedure we were ushered to more offices where Robin would fill out more forms and I signed dozens of documents, permitting all kinds of procedures and emergency measures.
Again I noticed a lot of patients milling around, who were either bald or had cheap wigs, many in wheelchairs, and everybody carrying a whole world of tragedy and suffering within themselves.
Then we were shown all kinds of video tapes and got a lot of generous suggestions to join one of the self-help groups, and we ended up with piles of leaflets, where and when to meet, and how good it would be for me to talk to other cancer victims. I was not so sure about that because as strong and fearless as I felt at the time I was not sure if I could help carrying other people’s burdens when I hardly knew what was in store for me. I also don’t like to regard myself as a victim and I don’t like victim organizations. My decision to not converse too intimately with other cancer patients (victims) proved to be wise after the following experiences I had on the internet.
There are a multitude of self-help groups on the internet, which I studied dutifully, and after a few hours of reading about the fate of other Head & Neck patients, their ups and downs, and their hopes of being cured that very often would be destroyed a month later by an unexpected horrible death. They would also come with pictures, of which one I vividly remember: It was a sweet blue-haired old lady, in her seventies, who went through several weeks of radiation, which, at the end, showed a huge, horrifying, openly bleeding wound on both sides of the neck. Above this gory battlefield, glowed her tiny confident face, seemingly not fazed by what they did to her body. I was impressed and terrified at the same time about the amazing courage of this little old lady. Nevertheless, a few hours of that exposure will put you in deep depression and give you a feeling of helplessness (and impending death) that is contradictory to what you yourself have to deal with. It is good advice to search the internet for any information that you can glean from it, but it is smart to avoid self-help groups and to indulge in their bad luck stories; because, naturally, you can’t pick only the cases with a happy end. They are few enough in a sea of dying people. Self-help sites, just like in the real world, go with the motto: misery seeks company.
At the opposite end of the spectrum we find people who rather not think about their cancer at all, don’t want any information about it, and once they have a definite diagnosis, throw their case on the desk of their doctor and demand to be fixed. I suggest their theory is that the less they think about cancer the better they will be protected from it, and the good doctor will fix it. This attitude, of course, spares you all the prospective horrors that might be in your future.
I could not trust my life to a bunch of medical experts who I barely knew, and skeptically approached all their plans, which turned out to be a wise decision.
My doctor friend, Asti, helped a lot to separate the chaff from the wheat, but nevertheless introduced the idea of an adjuvant Iscador. Iscador is the extract of the mistletoe, a hemi-parasitic plant that grows within the branches of a tree or shrub. The Twentieth Century anthroposophist, Rudolph Steiner, came up with the idea that since the mistletoe ignores gravity in its growth patterns, and being a parasite itself, would be useful in fighting cancer. The anthroposophist esoteric school has a unorthodox approach to healing which, at the time of its inception, brought quite a few new ideas into the realm of medicine with an accent on natural medicine and folk remedies, (besides a fairly convoluted philosophy about the physical universe).
I could not find any conclusive studies on the internet beyond oodles of anecdotal evidence. The theoretical reasoning, as I understand it, works by regular injections of the Iscador extract to create a low-grade inflammation that presumably provokes your body into a strong immune response, which hopefully should kill all the cancer cells. Even though I couldn’t find much positive beyond the anecdotes I decided to follow Asti, who, after all, was a well-trained M.D., and who strongly suggested it.
It was quite an ordeal to find a doctor in Los Angeles who could provide the Iscador which had to be imported from Germany, but we eventually found a wonderful doctor in the Crenshaw District, a black neighborhood, where he obviously ran a practice for poor people – one of the few doctors who practiced medicine with a heart.
Besides suggesting Iscador, Asti had another very important point to contribute, as I mentioned before: the different approach towards Head & Neck Cancer in America and Europe. In Europe they start the therapy with a regiment of Chemo and follow-up with Radiation and adjuvant lighter dose of Chemo. The Radiation/Chemo combination is based on the assumption that the cancer cells, which are attacked by the cytotoxins, are weakened and are more sensitive to the radiation, so that less radiation is needed to achieve the desired effects. The standard treatment in America is surgery, very often followed by radiation.
Our first task now, was to find out the discrepancies between the European and the American approach. We expected to solve this problem by making an appointment with the Head of Radiology at UCLA, at the time, a Frenchman named Dr. Guy Juillard, MD.
Chapter 3
Changing of the Guards
My relationship with Asti started in the seventies and lasted a lifetime. I met her when she was a young, hot student of medicine in Munich, where she also received her medical degree. For years we lived on the sixth floor of adjacent buildings, separated only by a wall or six staircases down and six staircases up. For a while she practiced in Munich where I became aware of one of her friends who started the Munich Tumor Registry. When I saw her friend putting data in some kind of grandfather of all computers I had no idea to what result it would one day lead and how much my life would be touched by it. Asti also lived and practiced several years in India, and a little later in life she worked as a Cardiologist back in Munich. During lunch time we occasionally came in and used the newly acquired state of the art ultrasound scanners. We looked at each other’s hearts, intestines, etc. It is quite a magic moment when you see your green heart on the screen pumping.
When I moved to America and Asti moved to Switzerland we stayed connected and for her there was no question to instantly come to my rescue, whatever it might be that she could do.
Now she was an attractive woman in her fifties. Her black hair was semi-short, very geometric, and had a sense of drama which reminded Robin of “ze French actress”. She had big round glasses, fire engine red lipstick, and definitely looked more like a serious actress than a doctor. She usually dressed with great simplicity and elegance.
And now the three of us were on our way to the UCLA Radiology Department. We ran through the usual routine until we were waiting in one of those little cabooses – and there was Dr. Juillard, a charming, jovial French man in his seventies. As far as I know he came to America in the seventies, but had a wonderful French accent as if he had arrived two days ago. He looked at my lump and immediately started to make plans. “Oh, we vill radiate your tu-mor and may-be shrink so ze surger-ay will be less dras-tickt, and maybe it vill disappear just from radia-tion”. I was kind of confused. I thought that my surgeon, Dr. Castro, was making the master plan. Down here in Radiology Dr. Julliard took over and made a completely different plan for treatment. Compared to the surgery, a one-sided or two-sided neck resection, radiation sounded like a walk in the park, with less of your tissue being destroyed. Now I wondered if we would get a repeat performance from the Chemotherapist, if he was going to take over and come up with a third and completely different treatment.
Then Dr. Julliard told us that I might lose my sense of taste and smell which didn’t seem to bother him all that much. “One of my patients vas a wine merchant from Napa Valley and ven he lost his sense of smell…ooh lala….he vas mad”. Since I wasn’t a wine merchant or a cook, in his mind it didn’t make much of a difference if I could smell or taste, as long as he could kill the cancer. That, he was confident of!
So now there was only the question left, how do we proceed with this radiation? Dr. Julliard had to leave for a short while and left us with his intern, an assistant doctor.
The day before I had found information on the internet about the so-called ipso-lateral radiation, which means a one-sided approach, so that the taste and smell, and the saliva glands, stayed operative at least on one side.
We suggested this to the young doctor and he blatantly responded, “We don’t do that at UCLA!” Asti got upset. “What do you mean you don’t do this here at UCLA? If ipso-lateral radiation is the optimal treatment for the patient we have to talk about this option.” Now the young doctor was also upset. “And who are you if I may ask?” Even though Asti was sitting on the floor she managed to talk down to him. “I’m Doctor Hagenbach from Switzerland and I would like to know why we can’t have ipso-lateral radiation here or at least talk about it?” “Well, we just don’t do it that way here!”
Now I was seriously pissed off. I got up and said to Asti and Robin, “Let’s go. We are wasting our time.” We sailed out of the building like a little group of guerrilla fighters escaping the realm of dogmatic medicine -- energized by their stubbornness and determined to find a better solution.
Our Karma ran over their dogma!
By the time we arrived home it was already dark. After all it was late November. Two good friends, Paul and Mike, highly intelligent, but slightly nerdy entrepreneurs, ready to win and lose a lot of money in the dot com bubble, were already waiting for us. I let everybody in and while Paul and Mike settled in the studio, Asti, Robin, and I were loudly debating the events of the day in the living room. Paul and Mike seemed slightly alienated because, I assume, they thought they were visiting a doomed cancer patient and expected a more reflective and grave attitude from us. We, on the other hand, were debating our next steps like three temperamental rabbis.
Meanwhile, Robin was expecting an old doctor friend who had practiced in Los Angeles for many years – Dr. Erik Fleishman. He was mainly treating aids patients, but lately was burned out on the job, and needed to do something more meaningful. These days he’s all over the world with Doctors Sans Frontier and Bill Clinton. He married a beautiful Thai girl and they have a two year old kid that is already as compact as his daddy is. Erik himself is not tall but very solid due to endless hours in the gym, I presume. Little did we know that he would change the course of our lives almost in the opposite direction we were headed.
For now, he wasn’t married yet, and when he arrived at our heated debate club we filled him in with the general history of my cancer. He palpated my neck. Then we told him about the latest skirmish at the Radiology Department. Erik was appalled to hear the dogmatic response and instantly took out his cell phone and said something to the point: “This is completely idiotic. Let me make some phone calls. These are doctors I know, even though I haven’t talked to them for a year or two, so I don’t know if anybody will even be there”. Then he started dialing. We watched him without great expectations. We had plenty of experience by now not reaching doctors by phone. There are layers upon layers that surround a doctor, from the administration to their assistants, to protect them from permanent interruptions while they are treating patients.
Not so with Erik. His first call went right through to the Radiology Department at St. Johns (a different hospital than UCLA) and he talked to my future radiologist, Dr. Robert Wollman. The essential information of this phone call was that the radiation machines at St. Johns Hospital were far superior compared to the ones at UCLA. We learned that UCLA’s machine had only two heads while the one at St. Johns had forty-one. This, of course, allows a more precise targeting of the critical areas than the two heads at UCLA.
You can call me naïve, but again I was shocked how easy they accept collateral damage at UCLA, without ever mentioning that a mile away a far superior machine was available.
Now I understood that it is my responsibility as the patient to make a serious effort to find the best equipment along with the people who can run it. This information is usually not volunteered because they still have to use up their old jalopies – after all this is a business!
We immediately made an appointment with Dr.Wollman. Erik’s next call was to an Oncologist, Dr. Daniel Lieber, who also picked up the telephone. He wanted to see me immediately, and we made an appointment for one of the next days where he could fit me in as the last patient of the day. Dr. Lieber was not part of St. Johns, but an affiliated clinic, The John Wayne Cancer Group, in an adjacent building.
Erik’s unexpected visit and the two more than lucky phone calls changed all of our planning and the course of our lives. Later, we found out how closely I scraped by endless mutilation, pain, and death.
Chapter 4
A Doctor To Trust
I started smoking when I was eight picking up cigarette stubs, discarded by generous British soldiers of the occupational army. Then I had an off and on smoking habit most of my life – not smoking for many years, and then again smoking like a fiend for the next ten years.
Head and Neck Cancer is generally attributed to nicotine and alcohol abuse. I don’t know how valid this is to a war child because half my childhood I played with asbestos. I had an ammunition box full of American led soldiers that I liked to chew on and my malnourishment expressed itself by my habit of chewing chalk off the walls until they prescribed calcium tablets for me. Later I lived in DDT loaded environments, worked in a paint factory where, by virtue of cleaning the paint vats with an ultra-deadly solvent, everybody over 40 that did this job had stomach cancer. At the time, professional risks like this were just as coolly received as the black lungs of the miners.
Later, when I painted and airbrushed large murals I rarely used a mask, dare-devil that I am, and by morning I would clean my nose and would pull out the colors in reversed order that I used them, through the night. I probably sucked in more cadmium, chromium, titanium, mercury and lead; all kinds of heavy metals than are legally permitted. Not to mention the oodles of legal and illegal drugs. But when you are young you expect to be immortal until you die by 30.
That was the plan.
When I was 50 I should have noticed that I hadn’t died at the age of 30 and should have gotten smarter by it. So I was still smoking until I had a heart attack at the age of 50. The irony of it all is that most of us, who originate in the 60’s, were worried more about the terrible effects of all the illegal drugs that we consumed than of the legal cigarettes and alcohol. Finally, when you get hit by cancer, and you find out it wasn’t the hashish, it wasn’t the cocaine, it wasn’t the heroin -- just the tobacco and the booze.
In spite of the careless drug use, and after eating mainly garbage throughout my youth, I became a macrobiotic, followed the instructions closely for some years, and after that had a relatively healthy diet. I also had a pet pride that prevented me from getting fat, because I am of a semi-athletic build, with the tendency for a beer belly and fat thighs. So I felt I was in reasonable shape to fight cancer and endure the chemo and the radiation. Of course, there is no reasonable shape to fight cancer and, if you read the statistics of the scientific community, you have to accept that one out of five people will die from cancer regardless of their healthy or unhealthy lifestyles, and regardless if and what kind of cure they underwent.
And there is obviously no cure for “the cancer” in sight, maybe because there is no such thing as “the cancer”, and every cancer needs to be treated as a unique disorder with its own unique cure. Nevertheless, most cancers have one thing in common, they usually are already there for a long time by the time you discover their existence. Early detection becomes a dubious concept when you understand this. The dogma of the early detection definitely works with some cancers but seems to have little effect of the eventual outcome and does definitely not prevent cancer as some of these early detection programs seem to suggest.
In my case, the cancer had definitely progressed to Stage IV, which means it had metastasized. Since the lucky coincidence with our doctor friend, Erik Fleishman, I had two appointments, one with my new radiologist, Dr. Wollman, and Dr. Lieber, the oncologist. To our greatest regret, our second opinion, Dr. Asti, had to return to Switzerland. But even her short presence of two weeks had changed the course of this whole event.
Traffic was busy that Friday evening when we finally made it to our first meeting with Dr. Lieber at St. Johns. It was already dark. After all it was November. Most of the offices were closing. The lights went out and the employees turned into civilians eager to begin their weekend.
Except Dr. Lieber.
As his name suggests, he is of Jewish origin. His childlike vitality made it hard to tell what age he was, but somewhere we guessed around forty. He made sure that they turned lights back on in the rooms where we were waiting, and took care that some of the staff he still might need would stay around.
He showed us into one of his examination rooms and told me to change into the usual hospital garb. I did and he started his examination by doing something that I always admired doctors for. He tapped my chest and my back with his fingers and listened. That’s how the doctors in my childhood checked me before there was ultrasound. It is amazing what a trained ear can hear from these knocks. Then he checked my neck, my tumor, and the rest of the lymph glands under my arms.
The next thing I remember is his finger in my ass. Naturally, he was checking my prostrate. I was surprised by his direct approach and realized this man was not afraid of my disease. He had no reservations. He was fighting the cancer mano a mano. With his fingers still in my ass I realized I had found the man who would fight my cancer with everything he had. I trusted him because there was no hesitation in his approach, like he was making it clear, right from the beginning -- only one would leave this location alive -- me or the cancer!
In my childhood most doctors were like this. They touched you, poked you, squeezed you like a melon, looked in your throat, your ears, your ass, knocked on all parts of your body and listened to your interiors with their stethoscope. It was intimate and direct – unlike so many doctors I have met in the last years, which barely look at you, never touch you, rarely look at your file, and have about fifteen minutes to spend with you by virtue of some insurance company’s guidelines.
Dr. Lieber was like one of those doctors from my childhood. He gave me the feeling that if he had to, he would act like the country doctor in one of Franz Kafka’s stories, who is being put in bed with his patient until the patient gets better.
For Dr. Lieber, it was personal!
I was told to put my clothes back on. Meanwhile, the staff had left, and except the room we were in, the whole floor was dark. We sat down in his office and Dr. Lieber suggested a course of therapy. We would start with a round of chemo and finish the cancer off with radiation and adjunct chemo. He mentioned a doctor from Detroit, who not only was a world expert on squamous head and neck cancer, but also was Dr. Lieber’s teacher and advisor, who he would call tomorrow, give him the details of my case, and ask for his advice.
I noticed this now was the third doctor who took charge of my case, and began planning an entirely new and different therapy. While Dr. Lieber was very sensitive he was also bold and fearless, so I trusted him with this regiment – the details still had to be worked out. It turned out that this type of therapy was what was commonly used in Europe as Dr. Asti had told us.
When we left his practice that night we had the elating feeling to have found a trustworthy doctor, and had made a quantum leap regarding the type of therapy.
Being an annoying skeptic I was not sure if Dr. Lieber had invented his “Head & Neck Cancer Guru”, like Carlos Castaneda had invented Don Juan. So when I came home I looked up Dr. Al Saraf on the internet, and, indeed, there were pages and pages of papers he had written, and studies he conducted, more than you would expect one could produce in a single lifetime.
A slightly amusing aspect of this whole adventure was that my oncologist was Jewish, while his advisor was an Iraqi, and they both tried to save a life of a German!
Chapter 5
Heading for Chemo
A befriended doctor used to warn me about chemotherapy. He described to me how the doctors would wear special protective gear when they were dealing with the cytotoxins. “And that is the stuff they shoot right into your jugular”. He described the chemicals like the alien’s saliva made famous in the movie “Alien”, because it would eat through the table, drop on the floor, dissolve the floor, drop down to the next floor, and so on. Not something that you would happily invite into your body. Nevertheless, that was what we had decided to do. Dr. Lieber had called his mentor, Dr. Al Saraf, and prescribed a mixture of three different chemicals: 5FU/Carboplatin/Taxotere
Of course, I was enlightened about all the side effects that toxins designed to inhibit cell growth would have. I would lose my hair, my sense of taste and smell, my energy, and my immune system. I realized I needed to be as healthy as possible for the start of the chemo. Needless to say, all the conventional methods of diagnostics were applied from petscans, x-rays, blood panels, etc. A portacath was installed under my right collar bone which allowed them to pump their poison right into my jugular, because using the veins of your arms and hands seems to result often in the destruction of those blood vessels.
They also wanted to implant a feeding tube right into my stomach to prevent the typical wasting syndrome patients on chemo usually experience. Even if you have no appetite at all you can always pour a can of a protein drink down your feeding tube. I, on the other hand, did not like the prospect of not being able to take a bath for months, take showers with saran wrap, and all the other problems that might befall you, once you have a large hole in your skin. In my case it turned out to be the right decision to go for the bathtub, and even the excruciating pain that just a drop of water would cause in my throat at the end of therapy, I managed to absorb enough protein to lose just the weight I needed to lose. On the lighter side, this was one cancer joke that I came up with about this extremely unfunny subject: “One good thing about cancer – now I have my ideal weight”.
With all the important decisions made, time was the issue. Dr. Lieber wanted to start chemo as soon as possible.
I was almost ready: all the lab tests had been done and the petscan showed exactly what we expected to see. The portacath, a small gadget with an elastic membrane, was during a pleasant local anesthesia, implanted under my skin and hardly noticeable. The last test before the start of chemo was a colonoscopy which we probably should not have done.
Dr. Lieber connected us to a very friendly gastroenterologist at St. Johns who was supposed to do the colonoscopy the next day, and when we were in his office we liked each other so much (he particularly liked Robin very much) that we spent several hours in an amiable conversation about what, I can’t remember, but I don’t think it was about cancer. When we finally came home with the saline solution that you have to drink to empty your digestive tract, I realized that we were hours late in the program because of all the time we spent with our gastro.
So I wasn’t quite prepared as desired by the gastroenterologist when we arrived at the small clinic where they specialize in this procedure. Nothing extraordinary showed up in my intestines, but we suddenly felt slightly harassed by the tight timeframe.
In fact, when we arrived at Dr. Lieber’s the next day to start the chemo, some other parameters, like a blood panel, my blood pressure, or my blood sugar, which I can’t recall precisely, were not sufficiently stable, and Dr. Lieber decided to postpone the chemo start date until after the weekend, which gave me four days to recover. So, all the rushing didn’t really do us any good, and does it matter if you start your chemo three days earlier, when everybody in the business knows that cancer doesn’t grow over the weekend, nor on Jewish Holidays?
Chapter 6
Doctors Are Only Human Too
Before we started chemo we had a short meeting with my radiologist, Dr. Wollman, the Ultimate Master of the 41 Head Machine. The Radiology Dept. was located on the second floor at St. Johns, not the most modern building, with long gray corridors, endless arrays of doors leading somewhere, and, all in all, an architecture inviting to lose one’s way. Somewhere, past several elevators, automatic sliding doors and obscure waiting rooms, we found Dr. Wollman, and his team. I was introduced as a future patient. The team was amiable and the – I don’t exactly remember – either head nurse or main female assistant – was actually, as one would say, a hot babe. Dr. Wollman was not very tall, but a wiry character with a Genghis Khan mustache. He showed me the computer where he calculated the location and intensity of the radiation. Since I work on computers myself I was not all that impressed with the interface. It definitely had the lackluster appearance of an old IBM and was years away from Mac type interface. So it felt a bit experimental, which did not bother me, but in fact, created a certain enthusiasm about my therapy, because I was being treated with the latest equipment.
Dr. Wollman was also bald which led to the running gag that he just shaved to make his patients feel better about their hair loss. I don’t think this was necessarily true but at this juncture I have to say something about Radiologists, specifically, and Oncologists, in general. Everybody who had prolonged contact with the world of medicine will agree that Radiologists are a unique species amongst the doctors. In fact, even though it puts me in danger of being misunderstood I would say Radiologists, very often, come across like morticians. For a good reason! Patients, who might be young, vital, and healthy, come for their radiation treatment, and a few weeks later have aged ten or twenty years; are pale, withered and haggard from the treatment. All this, of course, in the hope that the patient will rise like phoenix from the ashes, return to his former health, and leave the cancer behind as a crispy critter.
Radiologists also never seem to touch you, and the relationship between Radiologist and the patient is probably the most distanced amongst all doctors.
It must be a difficult and a harrowing experience for a doctor to observe their patients practically dying in front of them because of their treatment. I can only imagine what it would do to my mind to have a profession where the patient comes in looking worse day by day, and all that would be left for me more often than not, is to blackmail him to complete his preplanned course of treatment, never knowing if he will live or die at the end.
This situation is not entirely specific for Radiologists – most doctors will encounter cases where a small harm has to do a whole lot of good. With cancer, it is, of course, never as clean cut as it is with a broken bone that needs to be straightened out. All Oncologists see their patients arrive for treatment with a specific defined ailment, and leave, temporarily, as complete physical wrecks with non-existing immune systems, depressed and shadows of themselves. And the doctor will put you through all this without a promise of a permanent cure. So it is understandable that some people prefer to die of their cancer in dignity rather than being dragged through all kinds of painful and punishing therapies to prolong a miserable life for another six months.
It cannot be easy for an Oncologist to have one patient after the other passing through their practice with basically very little, and at times, very crude options to help. And they all know that, since several decades, not much statistical progress has been made in curing cancer in spite of the billions of dollars that have been spent. Later I will write about new statistical evidence which raises the suspicion a lot of people with cancer will die in the same statistical ratio, treated or untreated. This can only be determined case by case, but should caution doctors not to use just any possible treatment that is available.
It also helps the patient to understand that a doctor also is entitled to a life and has a lot more patients than just me. In fact, his whole life is a passage of thousands of sick people needing to be helped, and as it is so often in life, the one that screams the loudest is being served. One has to have compassion with the doctor who stands behind his desk and behind him the wall, with no chance of escape from the patient.
The buck stops here. God bless all the doctors who put themselves in this nerve-wracking place of no escape.
Long ago I had a doctor friend who had just received his degree and she was now substituting for another doctor to keep his practice open during the holidays and also, of course, to gain experience in a real life situation. Her summary sounded something like this: “Twenty percent of my patients are genuinely sick and can be treated. Forty percent always return with the same problem, subtlety accusing you of being a bad doctor, and the last forty percent at least make the effort to invent a new ailment every time they come in. Those eighty percent, obviously incurable, will come back until the end of days.”
This was thirty years ago, and since medicaments are advertised on television, and now an even more powerful tool is available to the lay person - the internet. These days, doctors have to deal with patients who claim to know exactly what they have, what treatment they need, and what prescription drugs they want.
As a patient you don’t want to pretend you are completely ignorant, but you also have to be very sensitive and give the doctor room to work on his diagnosis, not yours. Some doctors had so many unpleasant experiences with internet savvy patients just the word “internet” in a conversation will cause a conniption. On the other hand, many doctors are such stuffy examples of the green demigod and behave so authoritarian they don’t even ask what your problem is but write you a prescription and say “take this, and call me in the morning”.
If you want to have an ideal relationship with your doctor he needs to get the impression that first, you are going to follow his advice to a “T”, and second you will be another success story for him. Naturally, it has to be wonderful for a doctor to be addressed as “the man who saved my life”.
I want to be the living proof of my doctor’s impeccable knowledge and his ability to deal with my cancer.
Chapter 7
The First Two Weeks of Chemo
Monday, November 24, 2003, I started chemo. It was going to be a regimen of Carboplatinum, Taxotere, and 5FU for a time-span of six weeks. One of the toxins was administered by a little black box, about the size of an external hard drive, that was attached to my portacath, and during the 24 hours I was attached to it, it would always beep when it injected minute amounts of the toxin into my body, which, once you got used to it, had a calming effect on me, as if I was listening to the electronic beat of my heartbeat, confirming that I am still alive. I was attached to this machine around two in the afternoon, could return home, and had to return it two o’clock the next day. Usually the beeping stopped on my way to have it taken off. This was followed by the other two cytotoxins. Then I was free for the rest of the week to develop all the horrible symptoms until a Monday later when I would be shot up again.
Everything started quite pleasant. The waiting room of the clinic was large and elegantly furnished, almost like a salon than a waiting room. That instantly instilled a feeling people here really cared about you and didn’t skip the details. From there you were usually taken to one of the small examination rooms where they checked the basics – blood pressure, weight, etc. And from there you proceeded to the center stage of this battleground, the chemo-room.
It was a fairly large room with a little island in the middle where the nurses had stuff, and a lot of recliner chairs in a circle along the walls. Next to every recliner chair one of those fantastic contraptions from which the bags with the chemicals hang. They are equipped with all kinds of LED’s and the ability to make sounds when a bag runs empty. They are also on wheels, the AC cord can be disconnected, and it runs on batteries until you are done peeing.
The nurses were happy they only had to deal with my portacath which I later understood very well when I saw how hard they tried to set an intravenous infusion for an old lady. The atmosphere was very quiet and friendly. After all everybody here knew why they were here, and nobody was here voluntarily.
As much as I dreaded chemo I was also curious how it would manifest and how I would be able to deal with it. I heard that it sucks the life out of you which my experience confirmed. But that came later.
The first night with chemo was, of course, dominated by the little ticking box that allowed me to only sleep on my back, and somehow, through some magic, forbid my body to move out of this position through the night which is surprisingly easy. The pleasant beginning quickly developed into a miner drama. Before my cytotoxins I would get an injection of decadron which was to prevent the expected nausea, but had the side-effect of messing up your blood sugar, and in my case, it also gave me a ravenous appetite, at least for a couple of days.
So when I came to my second appointment, Dr. Lieber, who is very aware how close to the edge the cancer therapies go, checked my blood sugar and determined that he could not justify applying my chemo treatment. He made a deal with us, if I could eat something fast enough that, in another hour, my blood sugar would be normal, we could continue. And suddenly, Robin was rushing all over the neighborhood, finally returning with a bag of French fries that I manically stuffed in my mouth knowing very well how all that must have looked to all the other chemo patients sitting around and trying not to barf.
The French fries worked. I was lucky. The poison was administered. Nevertheless, I was advised to get a gadget to measure my blood sugar and had to keep a diary of my blood sugar. Now I could return home. My throat already started getting sore, and mostly all I ate was creamy soups and protein drinks. I went down fast. A fungus between my toes was the first. My stool became an almost greenish black liquidy affair that had no relation to the food I had eaten. I was feeding myself with creamy asparagus and I was shitting evil demons. It was strange!
Slowly food lost its taste. But all this so far was manageable. I was confident I would be able to handle this for six weeks. Meanwhile, I had started to inject Iscador in my belly. And, as the instructions go you start with a low dose that you increase until quarter size inflammation appears on your skin. Then you supposedly quantified the correct amount of Iscador you should take from now on every second day.
After a week I realized I was developing an abscess at the location and stopped the Iscador instantly because I realized how dangerous this all could get with a compromised immune system.
So far everything seemed to be fine. My hair hadn’t fallen out yet. The lump seemed to be shrinking a bit, until Friday the 5th of December I developed a mild fever.
Chapter 8
A Near Death Experience
It was probably five o’clock in the afternoon when we called Dr. Lieber to report my status. I didn’t think much of my slightly elevated temperature and was surprised when Dr. Lieber demanded I instantly come to St. Johns Hospital. The prospects of driving through Friday afternoon traffic to stay in the hospital over the weekend didn’t seem very promising. Dr. Lieber was obviously very alarmed and did not accept any opposition. Not only did we have to instantly come to the hospital, but also measure my temperature every half hour and report it until we got there.
And while Robin navigated our car through an unpleasant wintry traffic my fever was increasing ever so slightly, but constantly.
When we arrived they immediately took a blood panel, and after a short time I found out that my white blood cell count, which is supposed to be between 7,000 and 10,000, was down to 300! Anything below 500 opens the door to every hostile life form that you are exposed to. So Dr. Lieber switched into high gear, did what he’s really good at, and on a busy Friday evening managed to get one of the few quarantine rooms, whose specific attribute is that the air pressure in there is higher than in the general hospital, so even airborne germs would have a hard time getting to my perfectly defenseless body.
While Dr. Lieber was negotiating my survival I was waiting in the reception area in the emergency ward. Stubbornly and completely idiotic, I refused to wear a mask. That seemed like giving in to the disease and I was not going to be a victim – I was going to be victorious! Stupidity and pride are perfect companions.
The emergency room was crowded with emergencies of all types -- people on gurneys who were rushed by us and people with obscure diseases, who looked like they came from far away countries, and would nod out in their seats.
Dr. Lieber came by to report on the progress of his activity and finally took us up to the second floor where the door closed with a rubbery thud. Next to the door was a container with disinfectants which everybody who entered the room had to disinfect themselves with.
As soon as I was in bed my emergency nurse appeared -- a classy black lady with high cheekbones, high heels, and nylons with seams. She was way too gorgeous to be a nurse, but took her profession very seriously. When she had to attach my portacath to the infusions on the IV-stand she wore a mask and worked on my chest for at least five minutes with several types of anti-bacterial solutions. She told me she voted for Schwarzenegger, which I resented, because she was so pretty. But Republican or not, everything she did she did with a degree of perfection that is rare. Robin and I were both very impressed.
For the next two hours I had a lot of doctors visiting. Amongst them an elderly fragile grey-haired lady who was, as I noticed, revered like a Bruja in a Mexican village. She was the expert for the antibiotic that needed to be individually designed for whatever was going wrong in my body. In the meantime, I developed a severe pain in my colon and it was determined that a fissure in my colon was the origin of the infection that had taken over my body. The impasse that we reached here constituted itself by my inability to take any strong opium derivative-painkillers, since their side-effect created severe constipations, which is the last thing you need when your colon is infected.
The first night, again, was an exercise in sleeping on my back without ever moving out of this position more than a few centimeters. My abdomen was painfully bloated and it turned out that after a good dose of ibuprofen I was pain-free enough for a bowel movement. So I had to time my bowel movements with the delivery of the ibuprofen, which came every eight hours. The first Saturday morning I was up early, in great pain, and begged the night nurse to give me my pain-killer an hour earlier than the scheduled prescribed. She was a petite Asian from a country where the rules have no exceptions – ever! My pain was no match for her sense of duty. Strangely enough, the next night, when I had the same problem, she instantly offered me a syringe with morphine for my pain, and while I was incredulously looking at this reversal of the situation, she was wiggling the shiny syringe in front of my nose like I was a fish, supposed to be hooked by it, and she didn’t seem to understand why I didn’t bite.
The night before they had not only filled me up with saline but also pumped me full of specially designed antibiotics, plus an injection of Neupogen, which is something like a miracle drug when it comes to replenishing white blood cells. I think the next day I was up to 2,500 units.
My abdominal pain demanded that I arrange my whole day according to the delivery of the non-opium pain-killers. The ibuprofen allowed a bowel movement which rid me of the pain for the next eight hours, but steadily increased until I was wincing for another pill. My sense of smell and taste had lately become strangely acute and I was incapable to eat the hospital food. Already, when I smelled the insulating plastic of the food container I would get nauseous. Thank God Robin was so kind to go home every day and cook some soup, cream of potato, cream of asparagus, cream of anything, and brought it in a thermos bottle.
The second day I incidentally earned great respect with one of the nurses. A doctor had tested my anus the day before, and at that opportunity behaved so careless that he made me scream. Now, as he was approaching my bed again, snapping on his rubber gloves, I had a visceral physical reaction, and yelled, “Get away from me! Don’t come any closer! We are NOT repeating yesterday”! I must have sounded scary because the guy literally ducked out of the room.
The nurse in attendance looked at me with a little glee in her eye, and said, “Thank you! Somebody had to tell him”!
With such good care, I was getting better fast. At least my white blood cells were greatly improving. The pain in my abdomen didn’t change much. One night I accepted the offer of the morphine, and regretted it, because I am not the type of person who nods out on opiates, but was wide awake all night.
That morning, after my dose of ibuprofen, I detached my IV-stand and wheeled it to the bathroom for my early morning bowel movement. When I combed my hair I noticed that entire parts of my hair came off. I decided to leave it at that. The next morning, same time, they were all ready to be plucked off my head, and resulted in an enormous pile of hair on the bathroom floor. It is amazing how much hair comes off one’s head. When Robin came, she was shocked more about the hair on the floor rather than my bald head, and wanted to pack it up and take it home. We quickly agreed that it wouldn’t fulfill any purpose, and put it in the trash.
I still had very short, soft whiffs of hair left on my head. The loss of my hair didn’t bother me all that much. This was obviously the price I had to pay for the fact that my tumor was shrinking rapidly. It was already half its original size.
Dr. Lieber, who came by daily, sometimes several times, was very happy about my progress. He, more than anybody, knew how closely I escaped death.
My hospital visit lasted only five days and I was exuberant to go home again.
Chapter 9
Home Sweet Home
It was a pleasure to be home even though I was falling apart rapidly. I developed every conceivable side-effect, from fungi between the toes, to ruptured hemorrhoids, fungal infections of the mouth. All were treated topically and, more or less, successfully. Pain and fatigue became a constant companion. I still tried to keep busy, particularly research on the internet, but had to spend more and more time in bed, worn out from the drugs. I was aging rapidly.
In the beginning of the chemo therapy I was still eating soups, but towards the end I lived entirely on protein drinks. Almost everything, except the protein drinks, had horrifying tastes. It started when I ate a banana and almost spit it out because it tasted like a piece of metal. As I described it at the time most things tasted like mothballs. Since my sense of smell was irritatingly acute I couldn’t bare if Robin was wearing perfume or if she lit a candle in another room of our house. The smell of the burning paraffin could drive me insane.
My acute sense of smell also created another problem we didn’t predict. It had to be either Robin, or me myself, to drive to the hospital appointments, because I could not handle the odor of any of my friend’s next to me in a car. It felt like the needle went from green to red, then rotated another 25 times and stopped where everything smelled as hideous as human imagination can create it.
I obviously wasn’t the only one with this problem. Once I observed a couple in the Chemo Room where the husband oozed desperate hate because his wife had put on some perfume and it was nauseating him. Later I found out that a lot of people just lose their smell and taste, and it is just a small minority, which experience the unpleasant effect of receiving these horribly exaggerated perceptions.
Days went by uneventfully. Robin and I both slept in the same room, in the same bed, but there wasn’t much of a sexual tension, because, if your body is just withering away into some haggard bone-filled bag of skin existential problems overrule most sexual desires.
At a time where death is a distinct possibility one tends to ponder how many loose strings one still has to connect, how many things have not been finished and are still unexplained and how many unfinished symphonies are still in your karmic folder.
So I started writing a book – the first of three installments – explaining what the sixties meant to me. Since I was right in the middle of the so-called sixties, in Europe, and after reading so much nonsense about this unique time in the last century I felt qualified to erase some of the misconceptions, and also needed to inject some humor into a situation where a small group of naïve revolutionaries tried to convince the planet that peace would be a great idea, and if everybody was fed, nobody would be hungry. Love, peace and apple-pie. Who would be able to reject such an offer.
Now I had to live at least long enough to finish these three books. I expected the cancer to honor this contract. Which it did!
One Tuesday when we came home from chemo therapy, I was completely exhausted and was going to bed right away. Then I wondered what a little marijuana would do in this state. It is well known to fight nausea and the wasting syndrome, but I was suffering from neither and I felt no medical justification to use it. Even though I have smoked marijuana most of my life I had stopped it completely after the cancer diagnosis. My personal experience with marijuana and pain resulted in the understanding that acute pain is unpleasantly exaggerated under the influence of marijuana and I would not suggest to use it to fight a toothache. This time, nevertheless, I was so broken down I could not have cared less about anything, as I thought, “fuck this”, I am going to roll a doobie and watch TV, as if nothing was wrong. And that’s what I did with an unexpected result.
Because, five minutes later, I found myself sitting at the computer typing away like somebody had removed all my aches and pains, as if the marijuana, like a heat-seeking missile, had tracked down all the pain I was so used to that I wasn’t even aware of it anymore – had tracked them down, destroyed them, and left me with a pain-free body. I instantly understood, that as a life-long marijuana smoker, nobody would give credit to my report, but I will report it anyway, because I am by far not the only one to make these claims. Hallelujah! Om Shankar Boom!
Chapter 10
The Exquisite Design of Car Bumpers
After my emergency debut, Dr. Lieber gave me a week off from chemo, to recover from the onslaught, followed by another week of chemo; and because in the meantime my tumor had completely disappeared we skipped the last week.
Now I had a month to recover, before the second course of radiation adjunct chemo would start. They prepared a ghostly mask of my face from a stringy white plastic-material. Its design would match three tattooed dots on my neck, and this mask should make sure that my head would always be in the exact same position during the treatments. There was no room for mistakes!
Dr. Wollman, the radiologist, was responsible to map my skull, jaws and neck and he designed the plan for radiating to radiate the suspicious tissue and leave the rest intact. There was a 95% certainty that my tumor was next to my tonsil; and we agreed that we should treat it accordingly. Four weeks of radiation were planned as well as a solid dose of chemo right at the beginning.
Had we not agreed about the likely location of the primary tumor I would have had to endure another two weeks radiation.
Mind you, my tumor had disappeared, and there was no diagnostic tool that could determine if all microscopic cancer-cells were gone or not. The second course of radiation/chemo was mostly a prophylactic effort to get rid of these recalcitrant cells, that make Squamous head and neck cancer so hard to treat. They tend to reappear with a slightly changed code, so the last treatment will not work anymore, and you will have to start from scratch, which you can't.
Once the visible tumor is gone, one has the tendency to believe that now the cancer has been beaten back and there is no need for further treatment. Dr. Lieber mentioned another patient of his who did exactly that – but we could never find out how well he fared, because he just disappeared.
I was going to be a good patient and did not skidoodle, but drove faithfully to every appointment. Robin had to work a lot these days, Christmas was coming, and so I had to drive myself to St. John's hospital, which wasn't too much of a problem in the beginning. Later it turned into a strange psychedelic odyssey – sixteen year old schoolgirls in full goth costumes waiting at the traffic-light – each counting the holes in the other girls multi-layered dresses.
– Or cars from the future – gleaming bumpers in novel -- never seen before shapes.
When you age fast, when your body becomes more fragile and decrepit day by day, every futuristic design, reminds you of the future that you might not participate in anymore, and you wish you could stay alive, just to see the latest foolishness of mankind expressing itself in the design of a car bumper.
I see a world where every object is oozing with love, the result of enormous sacrifices, pain and suffering that were necessary to make things, to put them here, to put them together.
Every nail would tell me a story – how it came that it became a nail, all the will and the blood of people, who dug it out of the ground, and forged it, and sold it, and got rich, and then lost it...
And now the nail was stuck in a wall of a little cafe holding up a framed sign that betrayed such hope for the future of the establishment. It said “Our First Dollar” and it contained a dollar-note.
The cafe did not do too well.
And I felt the broken hearts of all the people, whose dreams just didn't pan out.
Chapter 11
The State of my Demi-Corpse
I was in poor shape. I had lost weight; the weeks on protein-drinks were not without consequences. My throat was completely swollen shut. Only liquids would pass – with great pain. Robin had to buy a pill-crusher, so I could pulverize my medication and swallow it with a liquid. Instead of six protein-drinks a day I managed barely two. At the time I noted: ”The protein-drink hurts like sulfuric acid running down my throat, and I quickly follow with a glass of water which only hurts like battery-acid. Then I would sit down and wait for the pain to subside. (About twenty minutes or so...)
All this in spite of all the Vicodin or any other painkiller I could have wanted. I tried to avoid opiates as long as I could, because of the constipating side-effects, but there came a moment when the pain just became unbearable. I knew I had to watch my digestion and could look forward to a withdrawal.
They gave me "Vicodin liquid”, bottles of it!
I also had become super-sensitive to smells. Just getting near a bunch of candles would create the sensation of somebody emptying an extra-large box of detergents over my head. I would gasp and try to calm down, because there is no running away from a horridly distorted sense of smell.
When I looked in the mirror I saw a grotesquely worn out face, all asymmetric features seemed to be exaggerated, the hair had not grown back jet – just some soft white cover. I contemplated to have photos for a set-card taken – I would have been a perfect concentration camp Jew, or any other long-term prisoner of war.
The skin hung from my body, thin and wrinkly. I wasn't happy with my mirror image!
At the beginning of my last week of radiation I started to salivate profusely, a handkerchief full of an alien, green-black mucus every five minutes needed to be disposed of. Within three days I used up all the handkerchiefs, toilet-papers, paper-towels in the house, desperately trying to absorb an unstoppable stream of a foul liquid that tasted like shoe-polish with sugar.
Then my olfactory nerve must have gotten hit with a major dose of radiation, because one morning I realized I could not make it to the bathroom without seriously gagging. The mixture of smells outside the bedroom was overwhelming. I had to hold my nose and not breathe until I was back in bed, surrounded by more familiar odors.
I was supposed to drive to the hospital for my daily radiation, but I was in no state to make it to the hospital, unless I was anesthetized!
When the time of my appointment passed the phone started ringing.
An almost comedic scene followed: Robin would pass me the phone, but as soon as the phone was about a foot from my face, the most disgusting smell of old man's rotting teeth originating from the phone made me gag, and I'd just gesticulate desperately for Robin to remove the vile gadget from the room.
Next the nurse called, then the technicians, then the therapist, then the radiologist again.
I just could not talk into this revolting apparatus!
I don't think they understood my problem at all...
In fact, the day before I met Dr. Wollman, my radiologist, in the hall of the radiation department. He asked how I was doing. I knew I looked like a zombie, but tried to be upbeat and assured him that I would make it through the last three days.
His response was a knock-out hit, that I didn't see coming:
“What do you mean – three days? You still have another two weeks, because we did not find the primary tumor.”
I was shocked, did he really believe I would confuse four weeks radiation with six?
He might – he has many patients. I am my only patient and I don't hear four weeks when I'm told six weeks. (Six weeks would be what the insurance would suggest, because it's in their book of rules – “Squamous head and neck, no detectable primary tumor – six weeks!”)
I assumed Dr. Wollman had enough leeway to make decisions according to his own medical judgment, but he obviously preferred to follow insurance instructions, and lie to me. I drove home trying very hard to accept this new situation.
I still was determined to go through, even with this new timetable, but I felt a deep sense of betrayal. Suddenly Dr. Wollman's expertise looked like trickery, and he lost all credibility in my book.
Now, a day later, incapacitated by gagging on any new smell, the decision was taken away from me. As I wrote before, I could only either be anesthetized or in a coma make it to the hospital. Every smell that entered my bedroom, particularly chemical/perfumed smells made me gag uncontrollably – though I never vomited, presumably because my throat was completely blocked – and because there was not much in my stomach anyway.
After six PM they stopped calling for the day and I was closing in on a point of despair like never before during this therapy. My body and its excretions disgusted me. I fantasized running out of the house, away from those smells that might never go away again. I wanted to throw myself into the wet grass of our backyard and claw into the ground – which I knew was pointless – my nose, my olfactory nerves were part of me and there was no escape from the ugliness of the smells however far I would run.
Chapter 12
The Darkest Night
The possibility that I could be condemned to endure these shrill and painful smells for the rest of my life was frightening, and realizing that I had broken the rule by missing the radiation-appointment terrified me.
There was no way I could have made it to the hospital this day, nor did I see any chance to make it tomorrow or the next day. And Dr. Wollman had left no doubt in me that a break of more than two days was unacceptable, and I believed him.
I was torn between excruciating and exhausting sensations of pain, horrendous smells, a deep disgust of my body, and a tortured mind that condemned myself to death, because I was a bad patient. If I was not strong enough to survive the cure – I wasn't strong enough to live in this world – and why would I even want to?
I yearned for an accident, something that would kill me instantly, blot me out! Traceless. Like I never was...
The night came early – it was winter outside. Miserable darkness and no escape from this body.
After finishing with her last client Robin entered the room followed by all kinds of unsavory smells. She was tired, went to bed instantly, and fell asleep within minutes. Suddenly I smelled a terrible foul smell like rotten meat, and it turned out to be Robin's breath! I was horrified and ashamed of my deleterious perception -- she was sleeping so peacefully, and I was supposed to wake her up to ask her to turn over and breathe in the other direction, because the odor of her breath was making me vomit? How do you tell this to someone you love?
I held my breath to stop gagging, but luckily she turned over by herself, and did breathe in the other direction.
I checked the TV and the first image I saw was a strange muscular man, like a strongman in an old circus. He wore an awkward blond hairpiece. I thought I had landed at one of those obscure Mexican astrology channels, but then I realized quickly that I was watching Werner Herzog's "Invincible".
I was a great admirer of this German director and although we both lived in Munich in the Seventies, we only met casually, or at the Soccer-Sundays in the Park, where young German filmmakers would get physical.
"Invincible" was a film I had not seen, it is about Berlin in the Thirties, about the mystic and prophet Hanussen, who tried to enamor himself with the Nazis by predicting a great future for the "Aryan Reich". He hired a young strongman for his mystic Cabaret to play Ziegfried, made him wear a blond wig, and showed him off as example for the strength and magnificence of the Aryan race. When the strongman later exposed himself as Jewish, he became famous and beloved by the Jewish community in Berlin, but Hanussen lost his grip on the imagination of his Nazi benefactors and was discovered to be a Jew himself. While he did not survive the unmasking, the strongman went back to his Polish village, to pass on the message of the coming Holocaust. One last time he agreed to play a strongman to convince his people that they needed to be strong in the fight for survival, and in the process he accidentally injured himself with a rusty nail. Eventually, before he could pass on the warning, he died.
Many of my friends acted in the movie and there where moments when it seemed like I knew everybody. Everybody I saw, I had met sometime in the past.
Was I dying? Was I seeing everybody for the last time?
...and wasn't the film about me? Me, who never wanted to be, who I was, and when I surrendered to my true self -- I would die? Was that the message?
At the end of the movie Herzog chose a piece of classical music, so heartbreaking, so filled with melancholy, so deeply, hopelessly sad -- while the image on the screen showed a train following it's rail track through a jungle, while millions of red crabs covered the ground, crossed the tracks, were maimed by the train, or not -- it did not matter to them. It did not matter to the train either.
Then the film was over, it was late. I turned off the TV and sat there until the early morning.
Was I going to die? I could not say -- did it matter? I could not say either.
I decided to stop all medications. This, I knew, was going to be unpleasant, particularly the large amounts of Vicodin needed weening, but I had to make a decision to either stay sick, or trust my body to recover and heal.
I was not sure if I was going to wake up in my bed in the morning... but I knew, if I did, it was going to be a new life. A new life.
