Open Heart

by Jay Neugeboren

  “Eventually I think the genome project will prove useful to our understanding and treatment of disease, though it will not be the panacea its enthusiasts have made it out to be. Many of our most worthwhile discoveries in medicine have come about not when we were looking for a specific cure for a specific illness, but serendipitously—look at penicillin, at peptic ulcers, at the uses we’ve found for cortisone and aspirin. When you have enough good people working on something, as we do in genetic research, then the probability of serendipity—of discovery—increases. That’s just basic statistics and probability. But to date, the unbridled zeal for the genome project seems excessive.”

  “What bothers me about the attention given to the human genome project,” Jerry adds, “is that while we extol its virtues and invest large sums of money in research that will not, for a long while, be useful to any but a small number of human beings, tens of millions of human beings are languishing and dying for want of basic care and of known treatments that can, as with AIDS, relieve suffering and save lives now.”

  Dr. Richard Horton, editor of Lancet, reiterates Jerry’s view when he writes that “the major issue in medicine is not one of maintaining the past pace of discovery, but of making sure there is equitable access, throughout the world, to the discoveries we have already made.”*

  And the distorted priorities that often determine how we appropriate human and economic resources would seem to derive, at least in part, from a glorification and, at times, deification of biotechnology. Thus we have President Clinton declaring that by deciphering most of the human genome “we are learning the language in which God created life”; or Frances S. Collins, director of the National Human Genome Research Institute, saying that “we have caught the first glimpses of our instruction book, previously known only to God”; or Time magazine proclaiming that “armed with the genetic code, scientists can now start teasing out the secrets of human health and disease…that will lead at the very least to a revolution in diagnosing and treating everything from Alzheimer’s to heart disease to cancer, and more.”

  The problem with such extravagant claims, as Horton points out, is that “research tends to support [the] view that genes are mostly a minor determinant of human disease” and that “it is very unlikely that a simple and directly causal link between genes and most common diseases will ever be found.”* As to the usefulness of the genome project with respect to cancer, he notes that progress “will be painfully slow,” and, like my friends, though a quarter century younger, Horton doubts that “we will get far along this path during [his] lifetime.”

  In One Renegade Cell: How Cancer Begins (1999), Robert Weinberg, a biologist who pioneered studies in gene therapy for cancer, estimates that by the second decade of the twenty-first century scientists are going to know the elements of cellular wiring in such detail that they will have a catalogue of tumor-suppressive genes that will enable them to predict an individual’s susceptibility to a wide spectrum of cancers. Weinberg believes, further, that “the prospects for the development of totally novel anticancer therapeutics are bright.”* Nonetheless, he too concludes that “the big decreases in cancer deaths will… come from preventing disease rather than discovering new cures,” by which he means dealing not with the biology of cancer itself, but with its “ultimate causes”—those that “really begin far outside the individual cell, in our environment, in the food we ingest, and the smoke we inhale.”

  Other scientists and scholars, however, are not as certain that, when it comes to cancer, prevention will have such large and propitious effects. Gerald Grob, for example, writes that “the effort to link cancer to diet, carcinogens, and behavior—which have been central to the campaign to prevent and control the disease—have been rooted largely in belief and hope rather than fact.*

  “Smoking,” he adds, “is the one notable exception.” (Weinberg contends that virtually the entire increase in cancer from 1930 to 1990 was due to the use of tobacco, and that had lung cancer been omitted, the overall adjusted cancer death rate between 1950 and 1990 would have fallen by 14 percent.) Moreover, most other proven carcinogens, such as asbestos and high-level radiation, Grob points out, affect few people.

  In addition, prevention places a high premium on individual responsibility for one’s own health and well-being. Most of us, for example, are aware of the ways in which friends and relatives who contract, say, lethal forms of breast or prostate cancer often blame themselves for their fate—for not having been vigilant enough; for not having had regular and timely screenings; for not having paid attention to this symptom or that health advisory; or for not having stuck to diet A instead of having indulged in diet B, and so on—all of which, by lodging cause and culpability in one’s individual negligence, ignorance, and/or irresponsibility, becomes a particularly deadly way of blaming oneself for one’s own execution.

  Nor is this way of experiencing and understanding one’s health—especially one’s ill health—new. In the Psalms and, particularly, in the Book of Job, for example, we are told again and again that the presence of a physical affliction or ailment is the outward sign—the visible punishment—for (unseen) irresponsibility and wrongdoing. (See Psalm 1—“Blessed is the man that walketh not in the counsel of the ungodly, nor standeth in the way of sinners, nor sitteth in the seat of the scornful… For the Lord knoweth the way of the righteous; but the way of the ungodly shall perish.”) Consider Job’s friends, who, though they consider Job a pious and righteous man and know of nothing he has done that in any way is immoral or evil, nevertheless assume, given his afflictions, that he must have done something terrible to be suffering such a dreadful fate. (Thus Bildad the Shuhite: “If thou wert pure and upright; surely now He would awake for thee, and make the habitation of thy righteousness prosperous.” And Elihu: “Therefore He knoweth their works, and He overturneth them in the night, so that they are destroyed. He striketh them as wicked men in the open sight of others.” And Eliphaz: “Is there any secret thing with thee?”)

  In 1996, the Harvard Center for Cancer Prevention published a report that attempted to summarize current knowledge regarding cancer risk. Its conclusion: cancer is “a preventable illness.”* The center estimated the “percentage of total cancer deaths” attributable to what it determined were the established causes of cancer (for example, tobacco, 30 percent; diet/obesity, 30 percent; sedentary lifestyles, 5 percent) and calculated that “family history of cancer” was responsible for 5 percent of total cancer—thereby implying that virtually all cancer risk, with the possible exception of this 5 percent, was a result of potentially modifiable environmental risk factors.

  The alternative to this view, Grob suggests—“that the etiology of cancer [is] endogenous and not necessarily amenable to individual volition—[is] hardly attractive.”* Still, “it is entirely plausible,” he writes, “that cancer is closely related to aging and genetic mutations, which together impair the ability of the immune system to identify and attack malignant cells and thus permit them to multiply. If there is at present no way to arrest the aging process, then cancer mortality may be inevitable. Moreover, some of the genetic mutations that eventually lead to cancer may occur randomly, and thus cannot be prevented.”

  “There is also,” he concludes, “little evidence that cancer mortality is appreciably reduced either by screening to detect the disease in its early stages or [by] a variety of medical therapies.”

  But how can this be, I wonder, even as I review the data that seem to prove it is so. Is it possible that all these cholesterol screenings, CAT-scans, mammograms, and PSA tests, along with the much-publicized surgical and chemical therapies commonly used to treat problems revealed by the screenings and tests, are, at best, of secondary value (and may sometimes do more harm than good)? Have we really, in these matters, achieved only minor progress?

  I review my own experience, where neither blood tests, cholesterol screenings, an EKG, an echocardiogram, nor a complete physical were helpful in revealing the seriousness of
my condition. Nor, for that matter, had other much-lauded habits and activities—a lifetime of being a nonsmoker, along with years of vigorous daily exercise, the maintenance of a low-fat diet, and the taking of cholesterol-lowering medications and an aspirin a day—prevented my arteries from becoming clogged.

  The more I read, and the more I talk with my friends, the more I come away thinking, again: How little we know about things medical and biological—about why what’s beneficial to one person proves useless for another; about how and why and when, that is, some of us live and some of us die.

  At the same time, skepticism leavened by my sheer joy at being alive, it becomes clear that, unlike the situation with respect to many cancers, when it comes to heart disease, no matter the vast realms of our ignorance, we have, in recent years, made truly significant life-saving and life-enhancing gains. “One advantage we have in cardiology,” Rich says, “is that the heart lends itself to plumbing and mechanics—to gross approaches. I mean, just look at you and Dick Cheney—at David Letterman.” He laughs. “Better living through plumbing, right?” Right indeed, I think—because hundreds of thousands of men and women, like me, are alive and doing well because of the gains we’ve made—a half-million benefiting from bypass surgery alone each year. And even when one reads outcome studies indicating that some of us may not live longer with this surgery than without it, it seems indisputable that the quality of our lives, whatever the number of years each of us may have left, will, in most instances, be better than it otherwise would have been.

  Age-adjusted mortality figures give us a basic measure of the genuine progress achieved: whereas, in 1950, there were 307.2 deaths from diseases of the heart for every 100,000 people, by 1998 the figure had fallen to 126.6.* And when, in September of 1998, the New England Journal of Medicine noted in an editorial that “over the past 30 years, mortality from [coronary heart disease] has declined by more than 50 percent,” it emphasized that such a decline was “best explained by the joint contributions of primary and secondary prevention.”*

  Although the news may not be as good as the drug companies and media would have us believe, and although we may sometimes do ourselves a disservice by glorifying biotechnologies, or by idealizing a mythical doctor of years gone by—and though we may not now understand the ultimate causes of most diseases—we do, in fact, know some things.

  And what we know, I begin to understand in the months following surgery—whether about heart disease, AIDS, brain trauma, cancer, or depression—happily, in our time, when utilized wisely, and when tempered by our knowledge of what we do not know, does give us the wherewithal to do a great deal of good: not merely to palliate the harsher symptoms of disease, but to enable us to survive diseases that previously did us in, and to do so in ways undreamt of in our parents’ and grandparents’ philosophies.

  8

  They Saved My Life But…

  WHEN ELI WAS EIGHT or nine years old, and the UMass basketball team was ranked number 303 out of 309 Division I teams, we began celebrating the rare UMass victory by going out to breakfast together the next morning. Our favorite place was the Miss Flo Diner in Florence, Massachusetts, and by the time Eli was in high school and UMass was on its way to a number 1 national ranking, we were eating breakfast there several dozen times a year.

  One morning when Eli was ten or eleven, we sat down in a booth across from the short-order cook, and the waitress, setting down cups of coffee in front of us, took out her pad, looked at Eli, and asked: “The usual?”

  Eli nodded nonchalantly, but as soon as the waitress left, he beamed and spread his hands sideways, palms up in a gesture of triumph, as if to say. Hallelujah—I’ve arrived!

  “So: many many thoughts and feelings,” I write on March 9, 1999—my first journal entry following surgery. “Mostly they come down to: I feel v lucky to be here, and to be alive. And v blessed in my children and friends. Miriam telling me again and again how much she loves me, how happy she is that i am alive, how scared she was that i might not live. And Seth is wonderful with her, and with me. Aaron not waiting to be asked, but simply telling me that he is moving back home and will be taking care of me, and making sure i dont do things at my usual pace. And Eli, here my first w/e home, reaching across table and taking my hand in his, at miss flo diner, and telling me, moist-eyed, how happy he is that i am alive.”

  I see friends, I attend synagogue, I sleep ten to twelve hours a night, I take naps, I go for longer and longer walks each day, I read (Myriam Annisimov’s biography of Primo Levi, Ron Rosenbaum’s Explaining Hitler), and I write (reworking a novel I had completed before surgery). Members of my synagogue in Northampton deliver meals each evening for six or seven weeks; students—past and present—call, send cards, and visit.

  Four weeks after surgery, Aaron drives me down to Connecticut for checkups with Dr. Cabin and Dr. Hashim, and when both doctors say I can drive again, Aaron moves back into his own apartment.

  Within another week or two, I am walking a few miles several times a day, doing stretching exercises and sit-ups, and putting in a regular workday at my desk. Whereas before surgery I averaged five to six hours of sleep a night, I am now—still—sleeping eight, ten, or sometimes twelve hours a night, and also taking afternoon naps.

  What I find perplexing is that I am more tired in the early morning—more physically tired—than I am during the rest of the day, when my energy and stamina seem to be at higher levels than they were before surgery. I ask Rich if it’s possible that while I’m asleep my body is taking advantage of my being away, as it were, to work as hard as it can to repair itself. Rich says it’s possible—who knows?—but assures me there’s nothing to worry about.

  The first week in April, I take the train down to New York City, spend time with Eli, meet with my editor and publicist, and begin looking for an apartment. Two weeks later, in Northampton, walking past Smith College on my way into town, my chest itches, so I unbutton the top button of my shirt, reach in, and scratch. A second or two later, I realize, happily, that this is the first time in two months I have experienced any sensation in my chest.

  I return to New York City the first week of May, this time for a reading and party to celebrate the publication of my new book, and while I’m there, I take a sublet for the coming academic year. (Arthur to me: “Listen, Neugie—I know you’re a mature man and all that, but if you want me to take a look at the apartment with you—I might notice some things you might not see—just say the word.”)

  Then, on May 7, 1999, two days after my return to Northampton, for the first time in three months (and not four weeks after surgery, as I initially recalled after the event), I walk to the YMCA, change into my bathing suit, take a shower, and head into the pool area. I set down my towel, sit on the side of the pool, put on my goggles. My hands, I notice, are trembling. Am I really here? I feel a pressure-like pain in my chest—the first time this has ever happened—and tell myself to take deep, slow breaths, in and out, in and out. I run my forefinger along the scar on my chest, as if to remind myself that what happened really did happen, and then, nervous, eager, and mildly terrified, I slip into the pool.

  “I swim for the first time! I swim, I swim again,” I write. “Fearful before going in—as if worried i will have shortness of breath again, no problems tho. arms not sore, no stiffness or awkwardness. Easily do a half mile, and then stop, so thrilled, delighted, eager…”

  Two days later: “i swim 44, easily, am about to go to nautilus, but hear sound of bouncing ball, and instead go into gym and shoot hoops for about 20 minutes, dont leave until i hit 3 long jump shots in a row…oh my it is good to be alive! home and watch some hoops, repair bathroom floor, mow lawn, etc…”

  (Two years later, however, visiting friends who have a lakefront home, and swimming in choppy water, the water sloshing into my mouth, I will panic. Each time I swallow water, I gasp. I switch from the overhand crawl to the breaststroke so as to be able to keep my head above water, and, as my friends get farther and fa
rther ahead of me—we intend to swim about a mile out before returning—I want to cry out, “Help me help me—it’s happening again!” Although, swimming alongside them in an olympic-size pool, as I have previously, I am usually ahead of them, this time I stay behind, and even while I continue to move arms and legs, I vow that if I survive, I will never macho it again—that at the first incidence of breathlessness, I will stop and get out of any body of water I’m in. I swim more slowly—regain some confidence—and a moment or two before I decide that yes, I am going to call out that I’m turning around and heading back to shore, my friends turn around, and we swim to shore together.)

  Sometimes, washing in the morning, or getting ready for bed at night, when I look at my arm, chest, or leg, I am surprised: How did these long, fresh scars get here? And: Do they really belong to me? When I touch them, it occurs to me that it has been only the briefest of intervals since my body was cut open, my arteries and veins harvested and relocated. (When the bills for surgery arrive, I wonder, too, why it is, since the spare parts the surgeons used for the five grafts were taken from my own body, I have not been given a discount.)

  At my first postoperation checkup, Dr. Hashim examines the scar on my forearm, where the radial artery was removed. “The plastic surgeon did that one,” he says. Then he runs his finger down the scar on my chest—the so-called zipper all survivors of open-chest bypass surgery wear. “I did this one,” he says, smiling. “It is much better work—much finer, don’t you think?”

  He tells me to continue taking Norvasc (a calcium channel blocker used to decrease blood pressure by dilating blood vessels). This is a precautionary measure, he says, calculated to protect the internal mammary arteries he used for two of the bypass grafts. “Mammary arteries are God’s gift to cardiosurgeons,” Dr. Hashim tells me. They have wide openings, do not collect plaque, and, like the appendix, seem no longer to have any biological function within our bodies. They are composed of smooth muscle tissue that can contract and relax involuntarily, however, and in the immediate postoperative period, having been surgically traumatized—cut, touched, drained, moved, manipulated, and stitched—they become notoriously susceptible to spasms. “By lowering your blood pressure slightly,” Dr. Hashim explains, “we will keep them from spasming.”