The next thing I knew I was waking up and speaking with both the surgeon and my sister. I don’t remember anything said; he apparently assured me that everything went as planned. The whole first day and night was a haze although there was surprisingly little pain. In fact, the severe pain in the back that I had had for the previous month finally got some relief from the morphine after the surgery. The morphine was set for 1mg an hour but I had a button that enabled me to get another 1mg up to every 20 minutes. After I had pushed the button numerous times I figured it must be morning but I found that the clock said 1AM.
The days after surgery were not very pleasant but it was all part of the game. I appreciated the many visitors who came to cheer me up. A Buddhist minister, who is a former student, regularly visited. She was insistent on my learning Buddhist techniques of healing. It took me all of the five days to get my digestive system stable. I also learned to walk in the corridor with the help of a cane. When it came time to leave the hospital, the crowds of people in the elevator and on First Avenue were intimidating. Tony Fasano provided invaluable help to getting a cab and getting us into the apartment. From then on it was a question of getting solid food into the system and through the system.
The big day was a week later when I went to see the surgeon and the oncologist for the pathology report. The lymph nodes would show if the cancer had spread. I understood that there were three possibilities: no cancer remaining, chemotherapy, or the cancer had spread beyond the colon.
I don’t think I was naïve but I approached the moment without anxiety. I was prepared for whatever was coming. If he had said, “sorry, it has spread to the liver or pancreas,” I would not have been surprised and not terribly dismayed. If I had six months or a year, I would not change my life much. It is true I had been thinking throughout the whole experience that maybe I would be a better person, more generous with my time and money. I did not imagine having a new personality but a slightly better version of the person I am. Perhaps if the news had been that I had only a few months remaining I might have changed for the better – or maybe for the worse.
The news turned out to be the best I could have expected. The tumor was large but it had not broken through the wall of the colon. The surgeon had examined fifty lymph nodes before declaring me cancer free (the oncologist told me they typically do a dozen). I did not need chemotherapy or radiation. Cancer free means that current machines cannot detect the cancer cells. I was told my chances were about three to one of a non-recurrence of the cancer. Those are pretty good odds although when betting on one’s life one would like a little better ratio. The surgeon, true to his style, quickly exited and left me to talk to the oncologist.
I was told that my chances might increase another four or five percentage points if I took part in a major research study of stage-two colon cancer patients. The key word was “might”; there was no guarantee of any personal benefit. In the study, a patient is randomly assigned to one of three groups: the first gets no chemo, the second gets six months of it, the third group a year of chemo.
I talked at length with the oncologist about the study. She assured me that the effects of chemo are not as bad as they used to be. I could do the 36 hours on Monday and Tuesday, while being ready to teach on Thursday. I don’t doubt her honesty but I have never met anyone for whom chemotherapy was anything but a horrible and debilitating experience. If the choice had been chemo or die, I would have taken the chemo (I think). Otherwise, I could not agree to the 67 percent chance of taking it with no promise that it would improve my chances of survival. I really would have liked to contribute to the important research. But if I have only a short time to live I don’t wish to spend six months or a year of it drugged.
The letters and calls resumed when I was at home. I cannot believe the number of people who offered me a place where I could rehab. Some of them I barely know or can’t quite remember from the past. The generosity of people just amazed me. While thankful to all of them, I had no inclination to go anywhere beyond my apartment which I had come to like very much after a year’s residence there. Each morning during the recovery I would try to add a block to my early morning walk (Manhattan is especially lovely before 7 AM), sometimes picking up a bagel and a good cup of coffee for my sister.
The night before I had had surgery I received back from the publisher a manuscript of mine with a request for major revisions. I told the editor I would get back to her in a week or ten days. Working on the revision during July and August provided something useful to do when I could not travel very far from home. That proved to be good therapy although I did not do a good job of revising. My mind was not as clear as I thought it was. I had to do another major revision two months later. I did manage to keep moving on it and the book, Living Nonviolently, is due to be published next March.
After being home from the hospital about a week I said to my sister that I suddenly had the feeling that I was now inhabiting my body. I realized that for the previous six weeks I had been a sort of spectator to what was done to me. I later was struck by a passage in Simone De Beauvoir’s Coming of Age. She says that when she had her first serious illness in old age, she suddenly realized that the woman being carried on a stretcher was herself. I know exactly what she describes. It is perhaps a reduced version of the near death experience in which people say they looked down from the ceiling at those who were trying to revive them. One clearly is alive, not dead, but there is perhaps a defensive move by one’s body to tamp down emotions of fear, flight, and pain.
I felt bad about canceling a number of obligations which I had for the summer. Some of them I did not feel terribly bad about, such as being a reader of a dissertation for the University of Queensland. I have regularly quoted Woody Allen that 85% of life consists in showing up. Whatever else I did I in my career I was there and on time. I had never had to cancel an agreement to produce an article or to show up as a speaker. People were very understanding of my problem even if it caused them the inconvenience of finding a last minute replacement.
I unrealistically had hoped to attend the International Seminar on Religious Education that was meeting in late July in Ottawa. I had to send my regrets at the last moment. I received many expressions of sympathy from colleagues in that organization; some of those friendships go back thirty years. One commitment I was determined to meet was my Fall graduate course in international education. It was a little presumptuous to assume that in the first week of September I would be ready for the bell but I was.
Throughout the Fall I had a number of medical problems that required attention. I was often not clear whether they were related to the cancer. Several of my physicians used the same metaphor, that my body had experienced an insult. Every cell of the body has to be informed and heard from before good government can be restored. I could not complain.
I referred earlier to a colleague whose full-time work was with children who are dying and children whose parents have died. Not much bothered her; the rest of life looks pretty good when you work constantly with the tragic. I think perhaps my experience of the past year has increased my equanimity during life’s minor crises. I noticed that in October when I was mugged on the subway. When the same MO had been used on me in London some years back I was discombobulated. This time I was surprised at my own reaction which was mainly one of disappointment. The subway is one of my favorite places where I have peacefully traveled for forty-five years. I was disappointed at someone abusing the subway.
As a good citizen I thought I should report the crime to the police. I have always felt intimidated by the police although my encounters with New York City cops have always been cordial. This time was no different. A detective carefully gathered all my information although I was not a very observant witness. He followed up and tried to track the perps through their use of my bank card. The robbers used my card to get food at what is probably the worst fast food chain in the country. The woman at Chase Bank agreed with me that they should have found themselves a better restaurant. I have to admit that the experience was mostly entertaining; the police squad room was more Barney Miller than CSI.
In the memoir I wrote about Maria I described a conductor on the Long Island Railroad who sat with me for an hour the weekend she was dying. Artie and I have remained friendly though I see him less frequently. In the summer, he was concerned about my health when I traveled on the train with my sister. On a subsequent trip when I was alone, he insisted on taking my phone number so that he could check that evening that I was okay. He did in fact call that evening, and when he did not see me over the holidays, he called again to check on my health. That is service one does expect from railroad conductors but it does confirm for me that despite all the terrible things that happen there is much kindness in the world.
As I did when Maria was in the nursing home I continue to marvel at the work that people do with the sick, the aged and the dying. I know they are doing it to “make a living” but so many of them obviously have more invested in their work than the need for a paycheck. The nurses are the most extraordinary as well as the physical therapists. Success is measured in such tiny steps or in resisting something that would be worse. I do not know how anyone works a twelve-hour shift with people who are not in a condition to be friendly and appreciative of what is done for them.
Life is now rather simple. I have started on a new writing project. The topic will not get many readers but these days I write what is of interest to me regardless of the number of potential readers. I am fond of a statement by Arthur Koestler that any serious writer would trade a hundred readers today for ten readers ten years from now, and one reader a hundred years from now. My neighborhood provides me with a surplus of both life’s necessities and entertainments, especially theatres and restaurants. A recent Times article on our most high class restaurant said that within a two block radius of it there are sixty-five food establishments. No need to go hungry.
However, my chief entertainment in life is walking the streets of Manhattan. Even after forty-five years of such walking there is always something surprising to see; the diversity of life is never boring. But mostly I am just happy to be walking at all. Every day is a bonus.
Report from the scene of our health care system
During the months of August and September, 2013, I was hospitalized three times. The experience provided me with some further unwished for material on the way that our health care system works. I have now seen the inner workings of quite a few hospitals and nursing homes and my experience has been consistent. I am in awe of people who work in home health care, hospitals, hospices and nursing homes. They do very difficult work that is unappreciated by many young and middle-aged people who do not have to make daily calls upon these services but who someday almost certainly will.
I wrote an essay twenty-six years ago on my experience in the emergency room of St. Vincent’s Hospital in Greenwich Village, a hospital that went bankrupt taking care of the likes of me. At that time I was new to emergency rooms and inexperienced with hospitals. I expressed admiration for the people who took care of me but I thought the system they worked in was too complicated and inefficient. I could give the same title of that essay “Caring People, Impossible System” to this current essay. The people who do the work are, with very few exceptions, amazingly skilled and caring, doing the work in good cheer and with dedication to the patient’s welfare.
As far as the medical system goes, there have been some great advances in recent decades due to technology. It is easier to store and transmit patient records and contemporary health findings. There are machines that do astounding things to aid the physician. But there are questions about whether this progress is keeping pace with the concomitant complexity of this same technology and with the strain of increased numbers of patients and the shortages of staffs and space.
My most indelible recent experience happened on the evening of October 1st. I had had a cardiac ablation in August to correct a wildly inconsistent heartbeat. The surgical procedure went well and did what it is designed to do. I still had a small irregularity and was wearing a heart monitor for two weeks that seemed to me unnecessary caution.
Suddenly after midnight, while I was doing nothing strenuous, my body was overwhelmed and I would have gone to the floor if I had been standing. That was followed by violent vomiting and shortness of breath. I had had a similar though less pronounced experience in August and on that occasion there was not found any reason for it. I was inclined to wait out the problem.
Somewhere in West Houston, Texas a tech guy was sitting in front of hundreds of monitors. Nothing had happened on mine in the previous six days. But he now noticed in the middle of the night that something had happened on my recording. My heartbeat had pauses of as much as 32 seconds. He called his boss who called me. Otherwise, I would probably have died during the night. The person who called told me to get to an emergency room. He called the hospital to let them know I was coming. The monitoring company also called my cardiologist, the first of four phone calls that the poor guy would get between 2 and 4 AM.
Like almost half of Manhattan’s 1.6 million people I live in a one person residence. We rely on a great but fragile health care system. Eighty percent of us do not have automobiles. I hear an ambulance siren at least once an hour. I first thought I could get to the hospital by taxi, as I have done on previous occasions, but the prospect of getting to the street and hailing a cab in the middle of the night seemed overwhelming. My neighbors of four years, whom I might have reluctantly bothered, had moved the previous day. I dialed 911 for the first time in my life, not knowing what to expect. A voice immediately said “what is your problem?” I said “heart trouble, I need to get to a hospital;” the voice said “what is your address,” and after my reply: “an ambulance will be there in a few minutes.” And to my surprise, in not much over five minutes an EMS team, a woman and man, were at my door. They either came from Beth Israel two blocks away or happened to be in the neighborhood.
They asked me where I wanted to go and I said NYU Medical. They said NYU has not reopened its emergency room since the hurricane a year ago. I did not know that was the case; it must throw a big continuing burden on the other emergency rooms which did not need an extra burden. The EMS man was a little skeptical of my request to go to Lenox Hill which is a considerable distance uptown. He said we will try to go there but if your condition changes we are required by law to go to the nearest hospital. At least the traffic at 2:30AM is better than during the day.
When we got to the hospital there were about ten ambulances parked on the street and we went to the head of the line. I cannot imagine what it is like in rush hours. They had to wheel me down the sidewalk to get to the emergency room. As has been my experience in the past, the emergency room was filled. And as I have also previously found, the staff was doing its humanly best to cope. Their first examination of me was based on the data they immediately had and my description of symptoms. The woman in charge of me said at 3AM that I might need a pacemaker in the future but it was not urgent. At 4 AM after seeing the monitor report and talking to my cardiologist she said: Your cardiologist will be here between 7 and 9 AM to install a pacemaker.
I received care throughout the night in a private room. During that day and the next the hospital staff were extraordinarily competent, friendly, and helpful. I have developed an ability when I am sick to take an objective view of the situation, the view of the spectator, partly to cope with pain and anxiety, but also to appreciate the wonderful things that skilled and dedicated human beings do for other people who are in dire need. The people in this hospital were some of the nicest people I have ever met. There seemed to be a good spirit among them which spilled over to the patients.
Twenty-six years ago I wrote that one could guess where the workers were in the medical hierarchy according to race and gender. That is no longer true. The staff was a United Nations of races and nationalities. And the medical profession is well on its way to becoming the work of women. The surgeon was still a white man (but one who did not seem to assert his status except in the directing of the surgery). Otherwise, one could not tell who the physicians were without a score card.
I think I have had a stereotype of anesthesiologists ever since one of them slapped an ether mask on me in 1950. This time a young woman named Marie, perhaps of Chinese background, (she looked about 17 years old to me) explained carefully what she would do and how I might react. The scrub nurse, Phyllis, was a kind black woman who directed proceedings in a friendly but precise manner. Her parting words to me were “I will see you in ten years when you replace the battery of the pacemaker.”
In the space of a few days I got to know at least a dozen people by name, something I have never experienced before in a hospital. They introduced themselves very formally and each of them explained what his or her role was. I could not have asked for better personal care from people who were working in crowded conditions (the technology floor was nearly impossible to maneuver in). They deserve better working condition and higher pay. Until that unlikely happening, they come to work every day and do what needs to be done with people who may not be in a position to appreciate all that they do and a general public that may too easily take their work for granted.
On Sunday morning, May 18, 2014, I had a heart attack; it was my third major event involving my heart in the last nine months. A year ago I would have said that my heart was one part of my body that I was confident of being healthy. I had done everything that I was aware of to maintain a healthy heart and such behavior had seemed to work. Not long ago men (especially) regularly had their hearts give out in their 50s and 60s. Now it is routinely expected within the medically advanced part of the world that the heart will just keep ticking. However, two and a half billion beats is a lot of work no matter how well designed and cultivated is the instrument. For a seventy-eight year old man to have a heart attack should not be a surprise but our own sudden and unexpected problems can still be a personal surprise.
The following account is an addition to a log that I seem to have begun inadvertently. The long running story is simply one person’s journey through the health care system.
I have found that telling the story has been of interest and help to a few people, and putting the story into writing helps me to put my own illness into perspective. This account contains nothing sensational or anything that is very far out of the ordinary. Rather, it is the particular details of what is becoming a nearly universal experience for those of us who have passed the there-score-and-ten mark that once seemed to be the limit of a full human life.
Looking back on seventy or more years, the length of life still seems like a short time. “Life is transitory: light and life together hasten away.” When my mother was dying in her mid-80s, I was surprised to hear her say “how quickly life passed.” She had witnessed most of the great changes of the twentieth century and yet her life seemed like a brief span to her. A line in a Samuel Beckett play about the length of a human life captures the paradox: “Two and a half billion seconds; who could have thought so few.”
During the week preceding the heart attack I had felt a number of small discomforts. There were no disabling sharp pains. Although unusually tired, I had engaged in what for me was a busy week of travel, dining out, meeting friends, and reading final exams. Each of the discomforts could be dismissed as minor although looking back they were cumulatively a clear warning that something was wrong. On Friday, May 16, I did feel so out of sorts that I submitted my grades to the registrar in the early morning because I had some expectation of going to the emergency room that day. By late morning I felt better and promised myself that on Monday morning I would call for an appointment with the cardiologist.
On Sunday morning I did not feel different from the way I felt in previous days. Then at about 9:30 I experienced a wave of discomfort that was similar to previous days. I waited for the feeling to pass but it hung on. Discomfort that I felt in my hands seemed a strange symptom and I dismissed that as something that I was imagining. I also wrote off a possible shortness of breath as probably due to an over active imagination and a bit of panic. I finally did decide that I should get checked out. Like a lot of people, I suspect, I was hesitant to call an ambulance. The EMS team might breathlessly arrive with their expensive equipment and decide that I had a touch of indigestion. The one time I had called an ambulance during the night of October 1, 2013, I had assurance from someone in West Houston Texas who was monitoring my heart that I could indeed be dead in a matter of minutes.
I knew I could get a taxi on Third Avenue within thirty seconds. On a weekday morning the traffic would be impossible but on a Sunday morning the taxi could get me there quickly, possibly faster than if I had to wait for an ambulance. The decision, of course, was foolish because in an ambulance one gets immediate treatment on the way to the hospital. I hailed a cab and startled the poor cabbie by sounding like I was dying in his back seat. He did go as fast as he could but a trip from Thirteenth Street to Seventy-Seventh Street takes at least ten or twelve minutes even with light traffic.
At the hospital, the door to the emergency room was for ambulances and I was on foot. So I went in the main entrance and asked for help at the reception desk. After some puzzlement at why I was at her desk, the woman directed me to the back door of the emergency room. I had unintentionally circumvented the triage nurse at the entrance to the emergency room. There were bodies everywhere, as there always are in that room, and I was standing in the middle of the room until someone asked me what I was doing there. Their possible irritation at this old guy wandering around in their room quickly gave way to concern when they took a good look at me and immediately put me on to a bed.
The next half hour was a whirlwind of activity. I have been to an emergency room about a dozen times but I had never seen rapid motion of this kind except in television programs. Within a few minutes I was being given an EKG. The woman administering the test calmly said to me: “You seem to be having a heart attack.” They literally tore my clothes off; at the same time someone was doing a rectal exam to determine if I was bleeding internally. I was being asked numerous questions to provide information, starting with my name, social security, and of course my medical insurance. They were trying to determine such things as allergies and whatever medicines were already in my system before they started administering any other medicines.