In Remission

As the haze of the sedatives receded I perceived the face of the gastroenterologist. His expression of uneasy concern brought me to full awareness faster than would have otherwise been the case. He was holding a Polaroid, indicating a trouble spot with a pen. "Bob, remember where that polyp was? Now there's a bleeding ulcer in its place. I took some biopsies, but regardless of what it shows, you're going to have to have surgery."

The implications were immediately known to me. A bleeding ulcer at the site where a severely dysplastic polyp had been removed six months previously was unlikely to be anything but cancer. Within a few days I was at the office of the surgeon.

She was all business, as so many surgeons are. She had reviewed the medical record, including the ambiguous pathology report from the ulcer biopsies, and outlined to me that the best course would be to undergo a right colectomy. "If possible, I'll do it laparoscopically. That way the recovery is easier." I was scheduled for December 27th, 2010.

I was to be the afternoon case. I remember changing into the gown and feeling cold on the hospital bed. My wife and sons came back and sat with me. The anesthesiologist came in and introduced herself, making sure I knew that she had gone through training at the VA where I am Chief of Medicine. The next thing I remember is someone telling me they were aware I was in pain and they would get it under control right away. Then I felt what I thought was a colostomy bag on my right side, and I was discouraged. They transported me to a room and my wife was waiting for me there. "Look," I said to her, "they had to give me a colostomy." A nurse, she examined my abdomen and said, "No, that's an ice bag." Thank God, I thought. The incision had severed the superficial nerves such that I could not feel cold.

I was in the hospital for three nights. "You can go home as soon as you pass gas," declared the nurse. You have set the bar rather low, I thought. I had a beautiful view from my window, as the foothills were dusted with snow. A number of visitors came, and Allison and the boys were there much of the time. I never got a meal as such; I think the most I got was full liquids. Discharge could not come soon enough, and I was home for the New Year.

It took about ten days to learn the findings on the pathology report. My wife kept after me to call the doctors, but I was content not to know for the time being. At least I could pretend to myself that it was just an ulcer caused by compromised blood supply as a result of the thermal cautery of the base of the dysplastic polyp. But then the gastroenterologist called, followed by the surgeon: Adenocarcinoma.

There were unfavorable characteristics. For one, the tumor was rather large, almost 2 centimeters. There were many poorly differentiated cells, the most chaotic and rampaging of cancer cells. There was perineural involvement, implying that this cancer, like so many bad ones, does not respect tissue planes and will grow in any direction it chooses. There were favorable characteristics as well, however. The margins were clear, and all 38 of 38 nodes were negative. It was now time to complete the staging with imaging studies.

I underwent an enhanced CT of the chest, abdomen and pelvis. Waiting for the interpretation by a radiologist was one of the most difficult legs of the journey, but eventually I got the call from the surgeon's office: No sign of metastatic disease. T3N0M0. That means Stage 2. I was referred to an oncologist.

The oncologist reviewed my case as had the surgeon. He described the characteristics of my cancer to me, taking care that I understood it. Then he said, "I recommend chemotherapy, but not strongly." I had unwittingly plunged neck deep into one of the great controversies in oncology: What to do with stage 2 colon cancer.

Colon cancer has four stages. Stage 1 is a localized, small tumor and when it is resected it is very likely that the patient will remain in remission for the rest of his or her life. Stage 3 disease has positive lymph nodes, and stage 4 disease is metastatic (cancer has spread to distant organs). Stage 4 of course has a poor prognosis; while chemotherapy prolongs life, most stage 4 patients will die of the disease within five years. Stage 3 patients benefit from chemotherapy significantly more than do stage 4 patients, but even then most of them have had the cancer return by ten years. By contrast stage 2 patients have a relatively good prognosis. As many as 80-85% of the patients remain disease-free at ten years, but for reasons that remain obscure, these patients do not enhance their odds appreciably by undergoing chemotherapy.

Considering all of the aspects of my case, the oncologist estimated my odds of staying in remission without chemotherapy at 75-80%. "Many people in your position would not undergo chemotherapy, Bob," he observed. "But you have to ask yourself this question, and you have to be comfortable with your answer. If your cancer recurs in the next couple of years, will you regret not having undergone the treatment?"

I was not prepared to answer him at that time. It was a decision I would have to make through a fog of depression and pain, but after a couple of weeks or so, I had determined that I would not take the combination of oxaliplatinum, 5-FU and leucovorin. For although having recurrent disease might cause me to regret not having taken chemotherapy, the thought of having taken the chemotherapy and then having the cancer return was even worse. This treatment, also called FOLFOX, would make me feel sick and weak for almost a year and carries with it a ten percent chance of permanently losing the feeling in my hands and feet (neuropathy). If I have to face a return of cancer, I thought, I would rather do it having felt well for a couple of years as opposed to feeling badly for one year and then hopefully pretty well for one year. For little or no chance of improved survival, it hardly seemed worth it.

So what this cancer has left me with is a 20-25% chance of recurrence. If the disease returns, it will almost certainly be incurable, and my life expectancy would be approximately 22 months. I suppose most of those months would be relatively poor quality.

It was as if I had somehow found my way into one of those parallel universes the theoretical physicists write about. I had awakened in the life of someone else, someone significantly less fortunate. How did this happen? Certainly cancer runs in our family. One of my cousins had a heart attack; he protested to his cardiologist that members of our family don't have heart attacks, they get cancer. Not long after that he was diagnosed with hypernephroma, a cancer of the kidney. Three of my four grandparents died of various cancers, and my mother died of cancer as well.

Also there was lifestyle. I ate too much of the wrong kinds of foods and exercised too little. I was overweight and I piled psychological stress onto myself as if it had no effect on me. I had enormous stress at work and terrible stress at home; there was no place in my life of quiet refuge. I smoked cigarettes for 15 years and then cigars, and it was not unusual for me to consume as many as three or more beers with a spicy, fatty meal. Excess, I suppose, was the way I had chosen to deal with the lack of peace in my life.

I also considered more metaphysical causes. Perhaps people who felt wronged by me, residents or students I had spoken harshly to, or people I had otherwise disappointed somehow, might be able to forge their resentment and harmful thoughts and wishes into some kind of malevolent turn of fate. Or perhaps God, disappointed in how I had turned out, had determined to crush me into small pieces for the purposes of reshaping me into something that bore the mark of his craftmanship better than me.

In the wake of my surgery, I became convinced that the cancer was going to kill me. I developed a terrible insomnia, and in the dark hours of the middle of the night, I saw an endlessly repeating film loop of my suffering and wasting and death. I saw my skin turn yellow, I saw myself struggle for breath, I watched in horror as I acquired a strange and unpleasant smell and I vacillated between discomfort and pain. I helplessly observed the grief and horror on the faces of my wife and sons and then there was the inevitable funeral, dark, dreary and defiantly scornful of hope.

During this period of time I lost my sense of humor. Other stressors had besieged me as well: A lawsuit, behavioral problems of one of my children, major health problems of my in-laws and their effect on my relationship with my wife. The worst psychosocial sequel of this terrible experience was that it created a gulf between my family and me. I had foolishly anticipated that my wife and sons would rally around me and support me in the dramatic lifestyle changes that offered me an improved chance at survival. But in their individual universes this terrible business was happening to them as much as to me, and they were just as needful of support as I was. I had to learn to give them a wide perimeter, not to discuss the cancer and my need to confront death. They resented my demands to keep junk food out of the house and instead eat healthy, organic and vegetarian for this was to deprive them of one form of comfort. Instead of minimizing behaviors that caused me psychological stress, they increased them, as they were locked in struggles of their own. I got a therapist to help me process my dread at the unanticipated and yet certain outcome of life but in the end, the greatest support was from the other damned--other cancer victims.

It turns out that having cancer is like being in a very awful club. People I had known for some time came to me and said, "Well you know, I had cancer" or "I have cancer, and they say it's incurable." They tell you that although your doctors don't say so, there are things besides chemotherapy you can do, like exercising and making dramatic dietary changes (1). They help you to see that hopelessness, depression, insomnia and alienation from family are normal for people with cancer. And you cry together. I felt like I had become a character in the Clive Barker novel Cabal, part of a group of people condemned to live in the shadowy margins of society, in the underground vaults where the sunlight of carefree happiness does not shine. I thank God for those other accursed people though, for without them I fear I would have been flung deep into the cold silence of hopelessness.

How do you prepare to live and to die at the same time? This is the fundamental issue before me at this moment in my life. And there is seemingly only one answer, and it comes to you indirectly, circumventing reason. You ponder it, you consider it, you journal about it, you question it and underneath all of that processing you evolve, mostly unaware of it, into someone you have not been since early childhood. You become someone who lives in the moment, and so many of the choices you have made no longer make sense. Thoughts that accompanied me for much of my terrestrial journey, like "Things are kind of difficult right now, but eventually I'll retire and it will have been worth it because my retirement will be relatively comfortable" now carry little weight with me, for perhaps I will not live to retire. So anything I had planned on doing at retirement, I had better get done right now! Career achievements seem much less important than they used to, and in their place is an appreciation for the quality of each day lived one day at a time.

While the last stop on the journey of my life is certain enough (although the time of it is not), I am not certain about the destination of my psychological evolution. It has widened, to some extent, the chasm between me and my family, for they have not had the most common form of denial torn away from them, so they remain concerned with details that seem somewhat trivial to me. But I have to admit that I like what it has done to me so far. I hate it that it came to this for me to realize something so fundamentally true, but if you are courageous enough not to worry about tomorrow, today becomes a much nicer place to abide. Now I work to have at least a fairly long string of very nice todays, which is worth more than a million troubled tomorrows.

I could never have read an essay like this one and implemented its lessons without having been forced to look cancer in the face. But I fervently hope that out there somewhere someone will read it and realize that the life we live is kind of an illusion and that the underlying reality, while pretty terrifying in a lot of ways, is perhaps the only pathway to real psychological freedom.

(1) The Anticancer Book, by David Servan-Schreiber MD PhD. Physician, scientist and cancer victim, he has written a book based on available science that gives us a sense of empowerment where we otherwise felt powerless. Everyone who has been diagnosed with cancer should read this book.

(c) Copyright 2011 Robert Albanese