One July day at Rehoboth last summer, during a casual discussion of mid-life plans, a good friend asked me what goals I had. To his silent surprise (and my own), rather than talk about scholarly or publishing plans, I said my main goal was to live long enough to see my 4-year- old daughter grow up and be educated. Then we dropped the subject of the future.
The next day I was struck by waves of abdominal pain which forced me to return to Ann Arbor and enter a hospital under emergency circumstances and shifting diagnoses (ulcer, appendicitis, hernia). The same day I was operated on, and when I awoke my wife was there to tell me I had a right-side metastatic colon cancer so widespread that no surgery was possible. The tumor was left in, and the doctor said that I had very little time to live.
The shadow of my answer about my future plans haunted both my friend and me until we next spoke, especially since in middle age neither of us had experienced the death of any of our contemporaries.
In the blank fear of death which came over me in the following days, I felt little of the disbelief, anger or sense of injustice which apparently often accompanies such revelations. I simply felt -- and still do -- as if I had been struck by lightning. I was a random victim. The post-operative morphine and my literary training made my dream imagery perhaps more self-conscious than average. Every few drugged hours, as I rose to consciousness, a small, rectangular black-and-white sign floated up into view. It read: "I AM GOING TO DIE NOW." As I read it, it disappeared upwards out of view.
Coming to terms with an unexpected death sentence at 43 might have been the only subject of this essay, because it has its own wide fascination and application. But there is something more important to make known: the process by which many people discover the possibility of delaying or escaping what seems to be a certain death.
In the month or so following surgery, some interesting things happened to me. First, no one at the hospital ever used the word "cancer" in my presence. None of the surgeons, none of the nurses, none of the "oncology" specialists who came to discuss possible palliatives uttered the brutal word. It was a period of euphemism: "the disease," "the tumor," or simply "it."
None of these specialists suggested there was any real hope for survival. When I had recovered enough to go to my own university hospital's top oncologist, he was just as sure there was no hope. However, he suggested I enter a program of chemotherapy; he would not give any statistics, but said he had one patient who had lived four years (for reasons he could not truly explain).
My wife asked if there was any research going on anywhere else that we should look into. He said firmly, "No." She specifically mentioned the National Institutes of Health in Bethesda, and he again said, "No."
We went away in gloom. My family doctor said he doubted the suggested chemotherapy would do any good, and that it would not be worth the physical sacrifice. Aside from the day of the surgery, this day was the nadir of our hopes.
All through this period friends and family were tremendously supportive in many ways. Indeed, without their intense positive emotion, my psychological state would have been far worse. However, in their desire to console, everyone (often without knowing the details of my cancer) had a story of a miraculous recovery from cancer -- as if cancer were one kind of thing. I got well-intentioned calls from all over the country, offering all kinds of cures.
A missionary cousin materialized from Mexico with advice that I go to a faith healer in Tulsa. (This long-lost cousin and I discussed Dostoevski for an hour, and he told me we would "get past all this intellectual stuff" that was keeping me from accepting the only solution there was -- Jesus).
Other systems were urged upon me, all by sincere people who truly had my interest at heart, systems ranging from a pure macrobiotic diet (Life magazine had just done an article on this subject which everyone read) to a laying on of hands by an ex-engineering professor in suburban Detroit who allegedly had curative powers. A devotee of some kind of mental Japanese jiu-jitsu told me I should strive to shift my thinking from my logical left hemisphere (controlling my right side -- where the main tumor started) to the religious-philosphical right side (to achieve spiritual and physical balance).
Cancer is not one disease. It has many forms and is often unpredictable. When an unexpected remission occurs, people tend to attribute it to whatever they were doing at that moment -- taking vitamin C and selenium, seeing a healer, praying, or eating granola bars. And faced with certain death, one is more than usually willing to believe or try anything that appears to work on anyone. So the cancer patient is a prime target for nostrums of all kinds. For me personally this was a very confusing time; I could see the unscientific or irrational sides of all these suggestions, but it was very awkward -- since they were mostly people of good will -- to dismiss all of this "help."
In the meantime, my wife did what is important for anyone in this situation to do: she used her energy, her scholarly training and her memory to learn as much about cancers and treatments as possible. Books were bought. Every friend or acquaintance who had an experience with cancer was interrogated. Astronomical phone bills were rung up. She called doctors everywhere from Houston to Paris. Some places were helpful, others seemed to regard inquiries as an intrusion. After their own pathology report, Sloan-Kettering said they could not help, and a doctor in Paris agreed that NIH was my best chance.
This was an extremely painful process for her, but if she had not done it, I would not be writing this today. And one of the important lessons to be learned from this is an old one: you or someone who stands exactly in your place emotionally must become informed. The process of asking questions and learning can never stop.
A second and equally vital old lesson is this: don't believe the first doctor you talk to -- or the second, or the third or fourth. I cannot say where the limit is. But in the end my wife located an old acquaintance who now just happened to be working as a cancer specialist at NIH. This woman knew precisely which doctor to ask about my case. He just happened to have started an experiment, or, as it is called by the professionals, a "protocol," which dealt precisely with my type of colon cancer.
My wife talked to him. I talked to him. He would perform an operation which all of the Ann Arbor doctors said was too dangerous. This would be followed by an experimental kind of chemotherapy, at toxic levels. While no promises could be made, given this experimental treatment, I might have three to five years to live. Of course, if the experiment really worked, I might escape the disease altogether. Thus my trips to NIH and the National Cancer Institute (NCI) began.
I stress that not one of the many doctors I dealt with -- from my family doctor to the surgeons in Ann Arbor to the oncologists in two different hospitals -- ever suggested getting in touch with NIH. Of course, no doctor can know what experiments are going on everywhere, but good ones can know what places to explore, which are at least worth a phone call. The problem in Ann Arbor is that it is a university town, a sophisticated place medically, and in their egotism, doctors there think they are doing as well as anyone in the country can. Moreover, the University of Michigan hospital needs candidates for its own chemotherapy experiments.
Why NIH was never recommended has been one of the questions which has bothered me most. Discussing it with other doctors, I was stunned to learn the reasons for not referring patients are often anything but humane.
Cancer, whether curable or terminal, is a living to many doctors. Many are reluctant to refer patients out of their own care. For this kind of surgeon or oncologist, breast cancer means so many thousands of dollars in standard treatment. Of course such physicians might not put it quite this crudely -- they would rationalize keeping such a patient by assuring themselves that they were providing the standard -- the "best available" -- treatment and assuming it was as good as anyone could provide. But many standard treatments can be painful, expensive -- and essentially useless.
Meanwhile, NIH has some protocols for types of breast cancer which are extremely promising but which go begging for candidates. In spite of the fact that the results of treatment are much better than standard treatment -- and in spite of the fact that medical care at NIH is free to the patient -- there are not enough referrals from doctors around the country to fill the needs of the experiments.
It is certain that parts of bodies -- and whole lives -- are being lost because too many physicians prefer to give the traditional treatment and collect what they regard as the legitimate fees for doing so. To top it off, the medical profession learns almost nothing from the treatment of these patients -- not if they die or if they live. This is one of the main problems of the fee-for-service approach to medical treatment.
At NCI one of the primary goals is to learn something from every patient and his treatment. In this sense one is a guinea pig or, to use an even more modern and odious term, a "data point."
There is also a controversial aspect to being a guinea pig for an NIH protocol: randomization. A key tool in developing scientific ways of dealing with each cancer is randomizing the patients. After the initial stages of the experiment, new patients draw numbers. One group receives one treatment, another a treatment differing by one factor. For example, one group might be given intra-operative radiation (i.e., during surgery itself), while the second would get surgery first and radiation only later, after closure. Or, to take a more brutal example, for cancer of the limbs one group might get amputation and radiation, a second only radiation.
Obviously there are difficult choices when parts of one's body become parts of an experiment. Since my own case was regarded as hopeless, I was willing to take almost any risk. But while a number of NCI patients are in this category, by no means all come to NCI as a grim last resort. Many have fairly straightforward and potentially curable diseases. For them especially, randomization is one of the key issues. Very few hospitals around the country do this kind of thing, even though without controlled experiments, advancing knowledge of cancer treatment is more difficult and problematical. If there are no real controls, one gets no reliable statistics on parallel cases with parallel -- or opposite -- treatments. The computer, which some physicians at NCI regard as the most powerful medical tool available, cannot be put to its potential uses.
In the United States the typical patient with colon cancer as serious as mine dies after "standard" treatment. For colon cancer there are two very different "standard" operations; which you undergo depends largely on which hospital you go to. The two main variations have never been tested together and randomized, so that one could say which is superior. It's as if a basketball championship were always decided without having the two best teams play each other.
My own feelings about being a guinea pig are fairly simple: pain and hope are better than death. After the discouraging and evasive answers I got in Ann Arbor, the attitudeeI found at NCI was a blessing. While not making promises of a cure, every doctor and every nurse there is quietly confident: you have cancer, we're going to help you, we're going to attack the cancer, we'll do everything we can to beat it, there are reasonable things which we can try -- at the very least you will probably gain some time.
Better yet, at least in my case, the NCI doctors have done what they promised. I have been subjected to the experiment, and when things didn't go exactly as planned by the protocol, they immediately improvised what they saw as the best possible variant for my case. I have never been given the feeling that the protocol was more important than my health.
Like all other cancer patients' lives, mine has been a constant process of listening to my body and the results of blood tests. Each new symptom (or imagined symptom), each new variation in the blood count, causes fresh waves of anxiety. One imagines new areas of one's body being invaded -- and fantisizes about what the results will be. My own disease has had its ups and downs, including one unexpected surgical procedure and even more than the planned chemotherapy. An exploratory operation in the next few days will reveal how helpful all of this has been.
My wife and I ask many questions; we always get honest answers -- including, "I don't know." Surgeons have a reputation for egotism and for delivering the unkindest cuts verbally, partly because they forget the immense power their words have on the patient, but I have seen mostly concern and compassion.
This is all the more remarkable given the hours and stress under which the surgical division works. The hospital's physical facilities are mostly out-of-date and rather depressing, but the first-rate nursing care compensates for this. And as all patients know, at the day-to-day level, it is the nurses who really matter for a person's physical and mental well-being.
The very word "chemotherapy" strikes terror into everyone, but I work with a chemotherapist who is worth his weight in gold, and who has made it possible for me to get through the ordeal with as little destruction of body and mind as possible. Patients have little to do but discuss their treatment with each other, so I know from nine months of experience that most NCI patients feel the same sense of gratitude that I do for the miracles of medicine and the simple kindness that are part of the institute's daily routine.
Because of this -- and of course because I am still alive, against the odds -- I am distressed that so few cancer patients even find out about NCI and its work. Doctors' greed is not the only explanation; in part it is simple ignorance
One remedy would be more and better advertising and self-promotion by NCI itself. This is definitely an area that NIH needs to work on. My experience has been that one or two phone calls to NIH will not get you the answers you need. NIH does send circulars to physicians around the country about new experiments, but this must be part of the stacks of mail that reach practicing physicians, and it's not possible for every doctor to keep in mind every ongoing NIH experiment. Of course NCI funds are limited, and the organization is fighting against the kinds of prejudices and unenlightened self-interest which I have described.
One thing is clear. Most of us guinea pigs are satisfied. We have chosen to be subjects of experiments, and at the very least we and our families have been rewarded with hope. My little girl is almost 5 now, and I wouldn't be reading her bed-time stories if I had not become a data-point.