Don’t You Just Hate That?
Or, Cancer and Other Life Perturbations

D. Bruce Johnstone
Pundits May 1999


Don’t you just hate it when a pundit paper bears no resemblance to the printed promised topic??

Or maybe you don’t. It may be just as likely that you don’t care, or didn’t remember anyway. No matter. The topic is likely to be the secretary’s insidious invention, or the product of roughly thirty second’s thought eight or so month’s before when one agreed to the task and the date, but had absolutely no paper ideas waiting to get out--and none apt to appear.

It was that way with me. Prior to this time, I always had a topic that needed writing about, like wildflower folklore, or subarctic canoeing, or booteating, or geographic trivia, or futurism, or the Midwest, or Minnesota Democratic Farmer-Laborite bleeding heart liberalism. But this time, I had absolutely nothing tucked away in the far corner of the brain marked “maybe a future Pundit paper.” So, feeling a little cranky, and a little Andy Rooneyish, I said “don’t you just hate that?”—thinking maybe that I could make a paper out of the things that most irritate me. Then I was told that Pundit Walsh might have used a similar gambit in a paper given in my absence, without even consulting me beforehand. And I got to thinking that Andy Rooney, who makes a tens of thousands of dollars on each of his "knockoff" columns and 60 Minutes cameos, is in fact one of the things, or people, that annoy me—just like:


But while this kind of featherweight stuff is plenty to put Andy Rooney into a seven figure income tax bracket, I can’t stretch it into a pundit paper, even for an overtired, intellectually-uneven group like you guys.

And I couldn’t get by again (although I did once) wringing an entire paper out of all the really keen topics that I was not going to write about.

So I thought of a topic—more of a personal experience--that I had seriously considered and rejected several times for a paper, but about which I am asked at least once a month. The query usually comes from a friend, but sometimes from a stranger—a friend of a friend—whose wife or father or friend has been diagnosed with pancreatic cancer and who has heard that I had some kind of experience (can it possibly have been almost six years ago?) with that affliction and is asking, tentatively and apologetically, if I could talk about it.

Actually, talking about it is not at all hard, except that I was brought up with a kind of Midwestern Anglo-American overdeveloped sense of privacy that doesn’t mind letting others in on my experiences if you ask, but that is very sensitive—maybe “modest” is a better word--about imposing my experiences on you, especially when we’re talking diseases and operations and such.

In fact, I truly believe my experience to be quite unremarkable, and certainly not at all heroic. If there is a story at all worth telling, it is more simply my version of a sudden wrenching alteration of one’s life the age of 52. But that may have more in common with losing a job, a business, a spouse, or child, than overcoming a life-threatening illness. Lots of guys have had wrenching life changes in their 50s and have not felt compelled to impose their stories on their friends, particularly under the cover of a misleading Pundit paper title. (I did think of a true-life modification of my title: “don’t you just hate it when they tell you your cancer is back and you might have three to five months to live?”) But that is getting melodramatic, and awfully un-Midwestern. So I will just share with you some thoughts about my experience — which will, unfortunately, be not so much unlike what others of you have had, or (more soberly) will have. Part of getting older.

Medically, I will be mercifully brief—which is actually part of my story, because, unlike many cancer patients, I have chosen to not get consumed in the subject of cancer, or of cancer involving the pancreas, or of its various treatments. I have had friends who have had serious brushes with cancer and whose strength to battle the disease seems to have come from an aggressive “taking control over their treatment,” reading everything they could find on cancer and getting strength from each refusal to do it their doctor’s way. “Easy patients can be taken advantage of.” Maybe I am easy, or unimaginative or even a bit passive. But I never thought I had a lot to offer the course of my treatment by way of advice, and I had the advantage, psychological as well as medical, of physicians in whom I had great confidence.

It was in August of 1993, while vacationing in Maine, that I began having problems: most noticeably, the inability to hold down a lobster, or anything else. Back in Albany, my doctor took blood and found a heightened bilirubin count and noticed a slight jaundice—all signaling something amiss with the liver. When infection and hepatitis were ruled out, a blockage of the common bile duct was suspected, either stones or a tumor (although I don’t think I saw it that clearly then). My doctor went in to look via an endoscope, down the throat, through the esophagus and the stomach, and into the duodenum, the upper part of the small intestine, just below the stomach, to view where the common bile duct from the liver and the pancreas enters. There it was, a tumor, which was photographed, biopsyed, found to be malignant, and was probably reaching up into the pancreas.

A large and lengthy surgical procedure called a “Whipple” removed the head of the pancreas, the entire duodenum, about 2/3 of the stomach, the common bile duct, and the gall bladder. The surgery reattaches what is left of the stomach directly to the small intestine, and reconstructs ducts from the liver and the pancreas into the small intestine. After an abscess that required reopening the entire surgical site, pancreatitis, and forty days in Memorial Sloan Kettering Hospital, I went home to Albany and tried to resume life—which included being chancellor of the State University of New York system. SUNY was, of course, in another budget crisis, but at that time, unlike now, I had a great board of Trustees and a governor who, for all his prickliness, believed in public higher education. (But this is the other paper, which I am not giving tonight.) In any event, it proved devilishly hard to hold down food and to process that which I held down, so I kept losing weight, ultimately dropping a little more than 75 pounds. To get and keep some calories, I learned to insert a 23-inch flexible tube down my nose, past the part of the throat with the pesky gag reflex, into my stomach, to pump slowly in some 1400 calories while I slept. Now I at least wasn’t going to starve. In December, I believe it was, a CT scan revealed the return of cancer in the belly, and a tumor in the neck. The damn thing had returned and was evidently spreading. My doctor read to me the pathology report from the original operation, which I had not been privy to before and which revealed that there had been invasion of the surrounding glands from the original tumor. I asked how long, and was told it was hard to say, but maybe three to five months.

That was the first time that I realized this was really serious and that I might even not make it. A couple of weeks later, while presiding at a gala SUNY art show (I was still trying to be a chancellor), I had several small strokes that took a part of my vision, and left me unable to read. I finished out the evening and told no one, not even Gail, as I was unprepared for more bad news, and was trying denial. But she found out--I have forgotten how—and took me in for more CT scans, which showed the strokes. I called my chairman, then the rest of the trustees, and then my staff and vice chancellors, followed by a conference call with all 64 of the SUNY campus heads and announced my intention to resign, let SUNY get on with the task of finding my successor, and return to Buffalo to try my luck with Roswell, where Gail was still vice president for planning.

Harold Douglas, then head of Upper GI surgery at Roswell, put me immediately under a regimen of radiation and chemotherapy. We found a place in Rivermist on the waterfront that Gail, I later learned, quite disliked, vastly preferring a large restored home in the city, with six fireplaces. But she thought I needed the therapeutic balm of the water. I thought that her ideal place was ridiculously large and a bit dangerous for the widow that she was soon to be. I knew that we had to start downsizing our possessions, transfer assets to Gail, put the house in her name, and change the children’s custodial accounts to her. She took over all finances—I thought because she could learn under my benign tutelage; she thought because I kept missing the numbers on the left because of my stroke-induced visual field cut and screwing up the checkbook. It was a clever move on my part.

So we moved. The radiation and chemotherapy worked. I regained about one-half of the 75 pounds I had lost—which put me at about where I should have been for the preceding 25 years, and the strength came back to the point that I could put away the damn naso-gastric feeding tube and just concentrate on my high protein-high fat diet. In the fall of 1994, I began teaching—tentatively. By the spring, I had a full load. Within the year, I was complaining about how hard I had to work and how lousy the parking was. But I loved my new dress code, and the chance just to write and teach.

 So where’s the pundit paper? What is there to all this except for the story of my operation? What effect does this kind of experience—including the certainty of not long to live, and then the near miracle of recovery--have on one, or at least on me?

First, I think one never get back to where one was. It is not a simple matter, as the stories would have it, of “living each day to the fullest.” Even when I thought that my end was fairly near, I never had any inclination to do exotic or notably risky things. But I did (and still do) feel a sudden end to what I have termed long-term ambition. I can still work long hours, driven in part by interest in the job or the topic, and in part by my love of outperforming younger colleagues. But I have no interest any longer in that “last big important position” that I might otherwise have had after leaving the SUNY Chancellorship (And “left SUNY” I surely would have-- -in the famous words of former University of California president, Clark Kerr, as he fell to the assault of Governor Regan and his new Regent Cronies: “…leaving as I arrived--fired with enthusiasm.”) But even now, quite recovered and still only 58 years old, I have no interest in a big, important position.

 I have thought a bit about “why,” as I have rejected many offers to become a candidate for one or another interesting job—which by virtue of a staff and a secretary, would probably have me working fewer hours than I do now. But I just don’t care to be responsible for the welfare of an institution or an organization. And the reason why, I have concluded, is that I have a record of considerable success—arguably to the top of a career in public academic administration--due in so very large part to extraordinary luck and to the works of others, such that I do not wish to risk failure and exposure should my very good luck begin to diminish even a little.

In addition, I am married to a woman who is both smarter and harder working than I, but who has always put my career first—even as she was succeeding quite remarkably in her own careers as director of planning for the city and vice president for planing for Roswell. I am not sure that she wants it this way, but I would consider it unconscionable for me to take a job elsewhere and have her leave the Community Foundation for Greater Buffalo. Would I have come to this position had something other than a supposedly life-threatening disease been the occasion of my stepping off of my own career trajectory? Don’t know. But maybe it made me a little less absorbed with my own career.

My the theme of “luck” emerges again as I contemplated my life, especially in the darkest days when I really believe I had less than a year to live. I realized, of course, that we all die, and that life spans are arranged, as are most phenomena, on a roughly bell shaped curve, with a mean somewhere, I guess, in the seventies, but with about one-half of all life spans, by definition of “a “mean,” being shorter, and some of them considerably so. Life spans were not like the children of Lake Woebegone, where all can be above average. So I concluded that I would have liked to be in the one half that was going to live longer than average. But then, I became less certain that even that was such a good wish. So I came to conclude that I would have wished not to be dying quite yet, but that a great many good men and women and even lots of children have always had less of a life span than I seemed then destined to have—but that my own had been wonderfully rich and lucky. So what the heck.

This is not a profoundly spiritual position to take in contemplation of one’s own likely near death. But it worked for me. And it probably made me more aware than I had been of this “good fortune,” to which I keep returning.

Actually, I attribute my recovery only in part to good luck—primarily to the good luck of having a very robust immune system, and being married to a very giving and gutsy wife—but also to very good standard medicine. By “standard medicine,” I mean the best of what conventional medical science has to offer. Nothing “holistic.” No miraculous water cures. No twigs and berries, or apricot pits, or other special diets. Just conventional medical science, well practiced: surgery, radiation, and chemotherapy. Others claim to have found cures apart from conventional medical science. I worry about what seems to be political and ideological agendas behind some of the alternative medicine movement, and I worry even more that the pain and the fright of life-threatening disease may lead some to forgo the conventional medicine might ease the last years or months even if it cannot always cure.

I also rejected another explanation of what may appear to some as my miraculous cure, which is courage, or “heart.” It is, I suppose, a little flattering to hear my recovery attributed to my marvelous courage. But I believe this to be not only incorrect, but also potentially quite threatening. Because one day this cancer might well return and take me, and it has taken so many (including our beloved and courageous Peter Castle) who were every bit as or more plucky than I. What I do not want to be said of me then is “Bruce, who was so courageous the first time around, must have gotten wimpy this time.” No, a threshold of courage or heart or pluck is clearly important. But I believe that most people are, in fact, courageous near death, and that while this quality may be necessary, it is far, far from sufficient.

So I have thought about the other explanation for my recovery, which is spiritual: God’s doing. This may be; it at least reminds us that our cure is not just up to our doing. I know that a lot of people, including me and my family and hundreds of friends, I know many in this room, prayed for me in church or temple. But I do not think that whatever happened was because there were so many prayers from such worthy people that God just had to listen. Those prayers to God on my behalf were like declarations of love for and to me—and therefore were very precious. What I do not accept is that God favored me because of the number of prayers he may have heard. Because there are too many people as and more worthy than I who were not chancellor of SUNY, and who therefore did not have a whole lot of people praying for them, but who were cured—or were not cured—for reasons quite beyond our comprehension and quite beyond the power of prayers.

So while the experience made me understand myself better, and made me more humble and appreciative of the gifts I have received, I do not think that my recovery made me any more—but certainly not any less--religious than I was before. I like to think (and I say this with some trepidation, in the presence of some good ecclesiastical professionals) that God might think this is OK.

But let me finish on a much lighter note: on what it is like to be a tenured professor after so many years carrying administrative baggage: seven at the University of Pennsylvania as vice president for administration, nine as president of Buffalo State college, and nearly six as chancellor the State University of New York system. The changes, it will not surprise you, are profound, but I will cite just a few.

Faculty work, if it is to be done well, can be a murderous job if one is at all ambitious (remember I acknowledged abundant short term ambition) and takes pride in one’s work. It includes:
 


Faculty work does not have the automatic filters that say “no” like some other work features. There are no rules or even traditions that say how many requests for speeches or book chapters, or panel presentations, or consulting requests, or peer-reviews of manuscripts, or new doctoral students, or serving on the dissertation committees of other colleague’s doctoral students, or whatever. The pacing of one’s work is quite autonomous, and the very elasticity of time makes it all too easy to say “yes” to a task that is not due until some indeterminate time in the future. I am still learning.

 Faculty work is also frequently very inefficient work—particularly when compared to work that features a division of labor and where the important people do not do the little, menial, time-consuming tasks like answering the phones, opening all of the mail, filing everything worth keeping, making all travel arrangements, making all appointments, typing all letters, and cleaning one’s own office—all of which (and more) faculty do (at least at the State University of New York at Buffalo.) I used to pride myself on my efficiency. Now I realize that Donald Duck can be pretty efficient with four secretaries, one of whom does nothing but file and retrieve all of the stuff that I once thought important.

But now I’m sounding whiney, and I do not wish to associate that disagreeable trait with faculty work, because there is so much good about it.

The association with a profession that has been held to be noble in most cultures at most times is perhaps the most precious. Also precious is the control over one’s own work pace; also the ability to make a difference with students. And the ability to work with brilliant colleagues. Of course, some of the most brilliant can occasionally be wrong and even foolish, even while being brilliant. But their company is always enriching. I am not naming names, but we may know some of these.

Faculty work also has a much better dress code, particularly than the code for executives and other important people, especially in the Northeast. I still have somewhere a closet of pin stripped suites in various shades of dark. But now I dress up with a sport coat, and only sometimes with a tie.

Mainly, I am now doing what was always game plan, just a little sooner than I had thought, and under circumstances that caused some worry for lots of people—none more so than myself. But like I have said several times tonight, I am exceedingly lucky. And I thank you for allowing me to talk a little about my operation. It has been a very un-Midwestern experience for me.