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 farther 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.”
I tell Dr. Cabin and Rich that Dr. Hashim wants me on Norvasc for a full year. “Surgeons!” they each exclaim, shaking their heads; they both say they think Dr. Hashim is being overzealous in order to protect his “artistry,” and that in their opinions I could stop taking the Norvasc now.
“If the arteries didn’t spasm in the first four weeks, they probably won’t spasm for the rest of your life,” Rich says. Still, I continue taking the Norvasc. When I tell Rich of my decision, he laughs.
“It’s amazing,” he says. “Here you are, a bright independent-minded guy who actually has researched these things and knows a good deal, yet even you succumb to the infamous ‘authority of the doctor.’ Do you see what power we’re invested with? Can you imagine how awful it is—and I see it every day—when this power is coupled with arrogance and, too often—though not in your case this time, thank God—in the least competent doctors?” He sighs, says something about surgeons being brilliant from the wrists down, and then: “Your reaction’s a sobering reminder of just how vulnerable and defenseless patients are most of the time.”
After the trip to New York, I go on an “author tour” (Boston, Washington, D.C., Chicago), do some local readings, and continue to work on new projects, to swim and to play tennis and basketball, to spend time with family and friends, and to help Miriam and Seth plan their wedding.
On May 30, I celebrate my sixty-first birthday (“Peaceful happy day for me. V quiet, and that seems right: transition between lives. And now and now—the rest of my life”). And the next day: “Hard to recapture this a m the easy, peaceful, deep reflective feel of my new life, new sense of life: love talking with my old buddies, they get me through.”
And then this: “In absence of an on-site family, these guys are my family it would seem…suspect this is so for many of us these days: friends doing for us what extended families used to do.”
Arthur agrees. “I’ve done a lot of thinking about friendship,” he says. “Like you, I’m a man who has always enjoyed the company of women, and I have, generally, found women more interesting than men. But it’s very hard to have a long-term relationship with a woman if you’re married. This doesn’t have to be the case, of course. If I were a different kind of man I might have had more women friends. And I did, and do, have women friends, but the friendships were not of the same order as they are with you and me, with Phil, with Jerry. I mean, think about this: how many women that you were friends with in high school have you kept in touch with? And why not?
“We maintain no women friends from high school, and lots of male friends, and I think part of why this is so comes out of what I think of as a general cultural experience, which is that men have a way of relating, for the most part, that is different from the way women relate. Women are much more likely to talk about their feelings about each other with each other. ‘I was very disappointed that you didn’t come to my party,’ a woman will say. ‘It hurts me. All the important parties that I have—somehow or other you don’t come to.’ Now, a man’s response in the same situation is not to say anything, but, instead, to take a step back. Men titrate the distance rather than work through an issue directly, and for the most part this makes relationships easier.
“There seems to me a kind of unspoken agreement among men—and remember: this is in my experience, in my friendships—that we don’t confront each other about the mishegas— the craziness—that goes on in our relationships day to day. Most of my friends, like you, are Brooklyn men, and we went to the same high school, the same college, have the same cultural background, the same value system pretty much—our politics, our way of looking at the world. And there is a kind of implicit assumption that life is hard for all of us—we get our balls busted at work, and in a variety of other ways, and our friendships are a place to be in a nonjudgmental, let’s-take-what-we-can and enjoy-what-we-can-from-life attitude, whether it’s talking about women, whether it’s burping, whether it’s recalling happy days.
“Because it’s like a vacation from life, and it is not going to be intruded upon by confrontations that involve expressed verbalizations of negative feelings—‘You hurt my feelings, I never treated you this way, et cetera, et cetera.’ And I think women are much more likely to try to talk through conflicts, and the more you try to do this—I’m talking primarily about men—the higher the tension level, and the less you do it, the less likely there will be discomfort, and the easier the relationship will be.
“Okay. So it’s interesting to me in the ways this relates to being a psychologist, because many of the most constructive parts of a relationship in psychotherapy involve providing a caring, neutral presence where there is no judgment—where there is an acceptance of people for who they are and where they are, and where there are also high hopes. Now, our responsibility in the professional area is to help people achieve their goals. But the really interesting question to me, in a personal vein, is that I was very competitive in high school, and all the men who are now my adult friends were the guys I was competing with: to get good grades, to make the team, to get the girl, to get into Harvard or Columbia—and it should have worked against that, and it didn’t, and I don’t fully understand it.”
I suggest that what we have in common as friends is not only the texture of the life we shared—coming out of what was essentially the same apartment, with the same mother and father—but the fact that we have all survived that life, and have done more than survive.
“I agree,” Arthur says. “I think the relief we felt when we were together—relief from the intense, sometimes incestuous, conflict-ridden homes we came from, and to be talking about baseball and basketball and girls—this relief muted some of the competitiveness. You might be competing with a guy to get into Cornell, but he’s also a guy you could talk to about the Dodgers, and he’s not nagging and bugging you about a thousand little things the way we were bugged in our homes. And there’s also this: that we could choose one another as friends, as opposed to family, where we were stuck.
“Safety was going outside the home, where your friends became your family—you didn’t want the same tsuris outside your apartment that you had inside—so once I left my house early in the morning, I was home free!”
It was the same for me, I say, and friends I’ve known across a lifetime—Jerry, Phil, Rich, others—have been like brothers to me, but without the sibling rivalries and emotional gook that pervaded family life.
“Well, we’ve all had long lives,” Arthur says. “We’ve survived, and we are also, all of us, people who never gave up.” He laughs. “Listen: we’re so old now, Neugie, that we can’t die young.”
“But we do have these things in common, and we’ve been through stuff together,” he continues. “So when you have heart trouble, I have heart trouble. You have cancer, I have cancer. I’m fine today and I have a brain tumor tomorrow. We know that’s how life works. We’re under no illusions. We’ve stayed the course, we’ve deferred gratification, we got the job done despite the pain, et cetera. When we were fifteen or twenty, though, we didn’t give a thought to this. We thought about where to go to college, how to survive our families, hitting a clutch basket, going two for four, whatever.”
As the weeks and months pass, I continue to feel stronger and, after a while, less fatigued in the mornings. My stamina, when swimming and playing tennis, is better than it’s been in years; my weight stays steady at about 150, my body fat constant at about 12 percent; my cholesterol scores are ideal, my blood pressure within normal parameters, and my heart, at rest, now pulses consistently at about fifty beats per minute. (For the first several months following surgery, however, it beats at a rate that is, for me, unusually high: between seventy-five and ninety beats per minute; Rich tells me higher pulse rates are a common postsurgical event, and are of no concern.) Nor have I suffered any of the side effects, memory and cognitive losses in particular, that many people who have been through bypass surgery experience.
Through these months, and the months to come, my four friends remain a constant presence in my life. At the end of May, Rich flies in from California, and stays with me in my Northampton home. When I go down to see Dr. Cabin and Dr. Hashim for checkups, I stay in Guilford with Jerry and Gail. Hardly a day goes by when one of my friends does not call, and on some days (the same is true at this writing, three and a half years later) I talk with all four of them. We talk less and less about my surgery and recovery, and more and more about the things we usually talk about: our children, our work, our plans—and always, too, about what’s new (and old) in the world of sports, about times past, about people we know and what they’re doing, and about who has seen which old friend recently.
Arthur and his wife Paulette attend the reading and party for my book in New York City, and I find that Arthur and I are once again talking regularly in the way we did nearly a half century ago when we were at Erasmus, so that on days when, alone in my house, and later in my two-room sublet in New York City, I feel waves of sadness that, despite the knowledge of my good fortune in being alive, still recur, few things in life cheer me as much as a familiar boyish and enthusiastic voice on the other end of the phone saying, “Neugie—it’s The Rude,” followed usually by, “Listen. I was thinking about you earlier today when…”
In early July, I fly out to Denver, rent a car, and Phil and I drive four hours north, to Columbine, Colorado, for his daughter Elizabeth’s wedding (Phil’s wife and three other children have driven there a day before). We trade jokes and stories, and talk easily—about my surgery, about the book, about Phil’s work (patients I’ve met and how they’re doing), about former girlfriends and ex-wives (Phil has been married three times and divorced twice; I’ve been married twice and divorced twice), and about our friends (Arthur intends to retire from his private practice within the year, and Phil is concerned about him—about what life for such an energetic, intellectually curious guy will be like without the regular work he’s been doing most of his adult life).
I stop in Denver again at the end of July, on my way back from a two-week trip to Alaska, and I visit with Rich this time (Phil is out of town), who has arranged to be there to see me, and has coordinated his trip with a visit to his two children, Sharon and Steve, both of whom live and work in Denver.
On September 1, 1999, my brother Robert, after six consecutive years of living in state mental hospitals, much of this time in locked wards and on isolation, moves into a supervised residence on West 48th Street, in the Hell’s Kitchen section of New York City. The next day I move into my sublet in the same section of the city, six blocks north, on West 54th Street. It is the first time in thirty-three years Robert and I are living in New York City at the same time, and one night during our first week back, we have dinner together in a Chinese restaurant on Ninth Avenue.
“He keeps smiling at me,” I write the next morning, “and when i say something re nice to see him with a smile on, he beams and says, Its because im so happy to be here with you… and then: i was looking forward to this all day, Jay.” At lunch a week or two later, I mention that one of our cousins’ children is going to be married, and tell Robert there’s going to be a family function. “But Jay,” he says at once, “our family doesn’t function.”
“Another day, and some gains, but boy am i lonely and at sea,” I write during my first week back. “The grayblack clouds hover, and surely i feel the isolation as punishment for some wrong i have done, bee if i have done no wrong, why am i being punished by being so isolated from others?”
Such moments, however, occur with decreasing frequency. More often I come upon sudden expressions of joy: “what a time in my life! the surgery and, the further i travel from it, the sense of great good fortune—the realization, barely articulate, that i nearly died, and that everything, here to the grave, is a gift,” along with descriptions of the peace and pleasure particular moments now bring.
Wonderful day, and v happy to be here—deeply, slowly, savoringly so. wake a bit past 5 AM, and cant fall asleep again: so eager for life—for the day to begin: to be out doing things, being with friends, talking with people, working and eating and all ordinary and extraordinary things…
Late one morning near the end of my third week in New York, I walk to the local post office two blocks away. I wait in line until a middle-aged black woman, opening her station, waves me over.
“How are you today?” she asks.
“Just fine,” I say. “And you—?”
“Oh, I’m having terrible cramps today,” she says.
“Really,” I reply, without missing a beat.
“Listen,” she says to me. “In my next life I’m coming back as a man—”
“Interesting ambition,” I say. “Only you should know that it’s not all good for my gender.” I put a manilla envelope on the scale, and mention that I’ve been doing some research on heart disease—thus the envelope I’m mailing off, to a friend who’s written a book on women and heart disease—and offer the information that once the condition that causes cramps passes, women need to be more wary than men, since from this point on—postmenopause—heart disease will affect them at least as much as it affects men, but without as many traditional warning signs.
“Like I said, next time I’m coming back as a man,” she says. I pay and, leaving, tell her I hope the rest of her day is less painful. She smiles, wishes me a good day. “And hey—a good life for you too,” she adds.
I walk back out into the street, look up at the sky, blow a kiss to the heavens, and think: I’m home.
When Miriam was a child—before she began kindergarten—she would dress up in silk and chiffon scarves and spend hours by herself, dancing to music—Tchaikovsky, Mozart, Debussy, Gershwin—and I would peek into her room sometimes, or enter to change the record, and I would marvel at her self-possession and her grace. Now, on the evening of October 30, 1999, at her wedding, toasting her and Seth, I recall this moment, and make what seems the obvious remark: that from now on she will not have to dance alone. She and Seth dance, after which, our friends and family surrounding us, Miriam and I dance. A few weeks later, I receive a letter that begins, “Dear Dad: It’s not possible to put into words how much I want to thank you, but I hope you know that without your endless generosity the day I dreamed about would never have been the reality it was—it was truly the most beautiful day of my life…”
A month later, on the day before Thanksgiving, I drive down to see Dr. Cabin at his office in Branford, Connecticut, and when the exam is over he tells me that the surgery is “a complete success” (blood pressure normal, ejection fraction estimated at 50–55 percent), and that I don’t need to see him for a year. (From his letter to Dr. Katz: “[Jay] is doing quite well and seems to be fully recovered…I have suggested to him that he come see me on a once a year basis if he wishes just for routine follow-up.”)
When I give Rich the results of the checkup, I say something about the swimming and playing ball having had a seemingly paradoxical effect: having masked the severity of my symptoms while at the same time keeping me alive—and about how I seemed, before surgery, to have been living on the collaterals I’d developed from regular exercise. Rich responds by saying that being in good shape, and having a positive attitude (something he never discounts, unquantifiable as it is), probably helped save my life, and surely helped me through surgery and in my recovery from surgery, but that we really don’t know if the swimming and exercise built up my collaterals.
Rich published a study on collateral blood vessels in the New England Journal of Medicine many years ago that excited a lot of controversy, he tells me, and he explains that the collaterals seem to be genetically predisposed channels that open up, often, when the coronary arteries shut down. Whether or not it is exercise that induces them to do so, though, is not yet clear.
What is clear, he says, is that exercise conditions the entire cardiac muscle so that, in his words, “it can do more with less,” and this, he believes, is a major reason I was able to survive the occlusions in my arteries, and why my recovery has been so swift and full.
He compares the heart muscle to the skeletal muscles—to the difference, for example, between two people who have to run a long distance to get to safety, one of whom is a regular jogger, and one of whom is not. The jogger will have a better chance of making it because his muscles have been conditioned to do more with less. So it was with me, he believes, and though he was seriously concerned about my survival, what encouraged him all along was the fact that despite the nearly total blockage in my arteries, my ejection fraction—the figure that represents the force and efficiency at which the heart is pumping blood, and thus best tells us about the general condition of the heart muscle—remained within normal parameters.
I also tell Rich that Dr. Cabin’s assistant, while doing the echocardiogram, noticed something nobody had remarked on before: evidence of some slight heart damage. “You suffered a minor hit on one wall, I think—a small part of the muscle that is hypokinetic,” she tells me. “It might have been there before, and we didn’t notice it, or it might have occurred during surgery.” It is, she and Dr. Cabin—and Rich—assure me, “of no consequence.”
Although I find, once I have had my four-week checkup with Dr. Cabin, and more so after this nine-month exam, that I rarely, in my journal, refer to my health again, I notice that what I am learning about disease and medicine seems at times, when joined to old habits, to have little effect on how I act.
When both my cardiologist and family doctor recommend that I continue to take Lipitor, and my doctor-friends disagree, for example (Rich says that he thinks bad—LDL—cholesterol should be lowered when several blood tests in a row show that it’s significantly elevated, but since my numbers are low, he advises against), I am once again, as with Dr. Hashim and the Norvasc, in a quandary.
I’ve been reading the studies, and except in extreme cases (obese, sedentary individuals who were heavy smokers, have sky-high cholesterol scores, high blood pressure, strong family histories of heart disease, etc.), the cholesterol obsession—grown men and women worried about variations in their scores the way they used to worry about grade-point averages and SAT scores—seems a kind of media-induced madness.
When I run my situation by Phil, he agrees with Rich, and tells me the story of a doctor friend of his who had a CT screening—a cardiac scan—to see how much calcium he had in his coronary arteries. “It was a new kind of test, experimental, and the doctor offered it to him for free,” Phil says, “and it turned out he was in the ninety-ninth percentile for calcium. So his doctor sent him to a cardiologist. The cardiologist asked him about his history and my friend remembered once, a year or so before, having had an episode of tightness in his chest. So the cardiologist did a catheterization and found one stenosis, and ballooned it and stented it.
“But the stent failed, and now, for the first time in his life, my friend starting having angina—frequent chest pains. So the cardiologist did another stent and this one failed too, and my friend began popping nitroglycerine under his tongue all the time for the angina. He became depressed and fearful—that he was a good candidate for what we call ‘sudden death’—and developed atrial fibrillation. The cardiologist now recommended a third stent, open-heart surgery, or a stent that would also include, as I recollect it, the implantation of some kind of radioactive material.
“So now my friend asked, ‘Am I doing this to save my life?’ And the doctor said, ‘Oh no—not at all. I see no life-threatening situation here.’ My friend asked what his alternatives to surgery were, and the doctor said he could lose weight, do some regular conditioning, stuff like that—and he told him that the surgical procedures he had been performing, and was now recommending, were not to save my friend’s life, but only to improve his quality of life.
“But look at what his quality of life had already become!” Phil says. “And remember that it all started, the whole megillah, because of a number that may in itself be meaningless.
“I mean, the big thing now is doing whole-body CTs—CAT-scans—just to see if there are any tumors anywhere. But then what? If you find any, you have to find out if the tumors are malignant or not, and if they are, you have to decide if treatment will or won’t make a difference, and then you have to decide on the kind of treatment, but to do so you have to weigh risks when you may not have much sound information to base your decision on. And remember this too—the scan itself is only as good as the doctor who reads it.”
(On August 26, 2001, during the same week that Bayer takes Baycol, a cholesterol-lowering statin, off the market after at least thirty-one patients using the drug have died, the New York Times, on the front page of its “Style” section, runs an article about “the growing number of physicians who have invested in the hottest nonsurgical voluntary procedure around: full-body electron beam tomography.”* One company, with six offices in the New York metropolitan area, offers, in regularly placed ads in the Times, a “Spring Special—50% OFF BODY SCAN for a Loved One or Friend with Your Body Scan.” In many screening centers, however, Dr. Robert Grossman, chief of radiology at New York University Medical Center, cautions, there is just one doctor, who may not be a radiologist. “Do you want a cardiologist reading your gastrointestinal scan?” he asks. In addition, Dr. Grossman points out, scans are virtually useless in diagnosing the beginnings of prostate and breast cancer. Like Phil, he too worries as much about false positives as false negatives, since, in addition to needless anxiety and depression, they can lead to unnecessary tests and procedures, including biopsies, that carry surgical and anesthesia risks. “Mostly scans like this just play on people’s irrational fears,” he says. When I send the article to Phil, he agrees. “I think one of the main things in being a doctor these days,” he says, “is making sure the technology doesn’t overrun your judgment.”)
So that even while I continue to talk with my friends nearly every day—asking them questions, listening to their stories, sorting out my confusions, checking out my research against their knowledge and experience, and even while I collect more and more data that reinforce what they tell me about the problematic value of cholesterol scores and the dubious value of much screening—I find myself reluctant, as if physically inhibited, to go against my regular doctors’ recommendations.
For one three-month period, however, I do stop taking the Lipitor while at the same time exercising more strenuously and paying greater attention to my diet. I have eaten scarcely any red meat or whole-milk products for years, but now I cut down even more on fat intake. Without the Lipitor, however, my scores slide upward slightly—total cholesterol remaining under 200, but with good cholesterol (HDL) slipping downward into the mid-30s—and Dr. Katz, who previously suggested I might cut down to four pills a week, now tells me I should go back, on a daily basis, on the Lipitor. He gives me a new prescription.
I protest mildly, telling him that what I’ve been reading seems to indicate that cholesterol scores don’t appear to matter much in terms of mortality. He shrugs, and tells me that what I say may well be so. “But in these studies there are subgroups and subgroups,” he says. “Given your history of heart disease, you should go back on the Lipitor.”
Although I am, at first, too embarrassed to tell Rich I’ve done so (when I do tell him, he laughs and asks if the doctor telling me to take Lipitor isn’t the same guy who told me I had asthma), I find myself incapable of going against my doctor’s advice. It is not so much that I make a medical Pascal’s Wager (figuring I have more to lose—my life!—if I don’t do what my doctor advises than if I do), but that I simply can’t summon up what it would take to say to him, at this visit—or, more intimidating prospect, when I return for the next one—that I appreciate his advice, but that I decided to follow my judgment and not his.
I am bemused by this inhibition, and think again: how little we know, not only about the biological causes of disease and the relation of any particular disease to any particular person, but, more simply, about who we are, and about the often mysterious relation of what we know to what we do about what we know—about how and why it is, especially as we grow older, that we become so set in our ways: about how and why it seems to become more and more difficult for us to truly change, even when we should, as we ordinarily put it, know better.
Yet I also think: how curious—how wonderful!—it is that in this, as in so many things—in an infinity of instances—what we consciously know, and therefore believe to be a correct, proven, rational basis for choice and action, often proves no match for our habits of being.
Despite what I know, then—what I think I know—though I listen to my friends, I obey my doctor: I fill the prescription and start taking the Lipitor again, one 10-milligram tablet a day.
A few months later, in early March 2000, thirteen months after surgery and two weeks after I have returned from a ten-day trip to Israel with Eli, I notice several small, unfamiliar nodules under the skin of my penis—little bits of soft scarlike flesh along the shaft—and notice, too, that when my penis becomes erect, it now bends southwest at a slight angle. The nodules feel, to my touch, much the way I remember nodules in my neck feeling forty-three years ago, in March of 1957—nodules that were surgically excised, diagnosed as malignant, and irradiated.
I am concerned and puzzled, while at the same time, and even before I talk with anyone, I find myself laughing. Just when you think all is well, right, Neugie? Just when you think you have all the time in the world…
When I was operated on in 1957, the surgeon removed lumps from the right side of my neck but did not remove several nodules from the left side, though following surgery both sides of my neck were irradiated. Nor was the surgeon able to get to a lump high up on the right side of my neck, situated close to my ear, one I have called through the years “my friendly gland.”
I examine the nodules in my neck and in my penis—their fibrous texture is remarkably similar—and recall a joke I first heard when I was about thirteen: A cop shines his flashlight into the window of a car, onto a guy and girl who are parked somewhere near Coney Island. “What are you doing?” he asks. “Necking,” the guy says. “Well, stick your neck back in your pants and get the hell out of here,” the cop says.
But what are these lumps and how did they get here—and is it possible they’ve been here for a while, and that I’ve somehow not noticed them? Can there be a lymphoma of the penis? I wonder. Do I have some rare kind of sexually transmitted disease, or is the slight curvature along the shaft of my penis merely a natural occurrence that sometimes comes with age?
I recall a visit I made to my father, in 1976, a month or so before his death, when he was especially frail. “Oh I’m doing fine, son—in fact, I’m stronger than ever,” he said. Then he glanced down at his lap. “Now I can bend it.”
I telephone my friends. Rich says that what I describe has no relation to heart disease. Jerry says this is a new one for him, but after consulting with a colleague, he calls back to tell me that what I have turns out to be fairly common—it’s what President Clinton is supposed to have—and usually is not progressive. He can’t remember the exact name of the condition—sounds like some kind of French delicacy, he says—and suggests I see a urologist.
I talk with Phil, and he calls back a few hours later to tell me he spoke with a urologist in his building who has given him the name of a urologist in New York. The next morning, on his way to work, Phil calls again.
“Listen,” he says. “I’ve been thinking, and I figured out what’s wrong with you—what’s causing the problem.”
“What?” I ask.
“Atrophy,” he says.
“Atrophy?”
“Yes, atrophy,” he replies. “You’re not using it enough.”
Arthur says that through the years a few of his patients have mentioned a condition similar to the one I describe, and that as far as he recalls it did not inhibit their lives sexually. He gives me the name of a urologist whose office is a few blocks from me. “Not a great bedside manner, from what I hear,” Arthur says, “but competent.”
“The way I see things is this,” he adds. “As long as something is not life-threatening, then everything’s okay. And let me tell you this too, Neugie—and I say this based on having seen many, many men and women over the years, and in my office they’ve talked very freely about sex, much more so, you might be surprised to learn, than about money, for example—and I can assure you that there are lots of ways of pleasing a woman, and lots of ways a woman can please you.”
I recall another friend—a musician now living in Turin, Italy—telling me, some years back, that he had contracted a rare condition called “bent-dick syndrome.” I look through a few medical books I have at home, but find nothing under “bent,” “curved,” or “crooked” penis. I call my friend in Italy, and he tells me what he knows—in his case, he had become dysfunctional, but Viagra seems to have resolved the problem (though it only works, he says, when activated by desire)—and, laughing, tells me there is no such thing, medically, as “bent-dick syndrome.” The name for the condition he has is Peyronie’s disease.
I do some homework, and discover that my symptoms fit the descriptions I find—“Peyronie’s disease: A fibrous inflammation of the shaft of the penis resulting in a deformity (a bend) of the organ.” Though nobody understands what causes Peyronie’s, except when it is the result of a known trauma (invasive procedure, blunt instrument, injury during sex) or when it is associated with another condition of unknown origin, Dupuytren’s contracture (a thickening of the fibrous tissue beneath the skin of the palm, often accompanied by tell-tale spots on the palm), and though there are no known treatments thought to be generally effective (in some men the scarring process can progress to calcification and bone formation), what I read is vaguely reassuring: the condition is not fatal, it often responds well to one or another form of treatment, it does not spread to other organs, and it sometimes goes away on its own.
I make an appointment with Dr. Malcolm Haight, the urologist whose name Arthur has given me. Dr. Haight is associate director of the Department of Urology at a large New York City hospital. The waiting room of his office, which he shares with three other urologists, is small and cluttered. Among a stack of magazines, I find a loose-leaf binder thick with reprints of articles by Dr. Haight, including several about Peyronie’s disease.
After a twenty-minute wait, I am summoned into Dr. Haight’s office. I look at the clock, before and after, and note that the entire consultation, start to finish, in three different rooms, takes nine minutes, during which time I give a urine sample, have blood taken, and get a rectal exam, an examination of my penis and testicles, and a prescription. Dr. Haight never introduces himself, never says hello or goodby, never responds to any of my attempts at conversation.
To examine my penis, he has me lower my pants and lie on a table. Hands surgically gloved, he lifts my penis by its tip, as if, I think, holding a dead mouse by its tail, and to my query—“Is it Peyronie’s?”—he replies, “Oh yes, it’s definitely Peyronie’s.”
“Aha,” he says a few seconds later, while examining my right testicle. “A cyst!”
Have I had a PSA test? he asks. I had a full physical within the last year, I respond, so I may have, but I’m not sure. “Well, let’s do one,” he says, and when I sit up, he draws some blood from my arm, after which he has me stand and bend over so he can, through my rear end, examine my prostate.
In his office, I continue to attempt conversation—remarking on photos of his children, on his publications—but get nothing in return.
He writes out a prescription for PABA (potassium para-amino-benzoate), and hands it to me. I am to take two dozen 500-milligram capsules a day. I should also take 400 units of vitamin E a day. I tell him that on the advice of a friend diagnosed with Peyronie’s, I have begun taking 1,200 units of vitamin E a day, and Dr. Haight says this is far too much: 400 units a day is more than sufficient.
He stands, indicating that the exam and consultation are over, and tells me I should make an appointment to see him in three months. I ask about the cyst he found. Nothing to worry about, he tells me. What is the PABA for and are there any side effects? I ask. Will it reverse the condition? At best, it might cure it, he says. At worst, it will stabilize it. As to side effects, they are well tolerated, but I should read the manufacturer’s flyer. I ask him about sex—is there anything I should know? What about the future—am I going to be okay?
“Oh you have a mild case,” he says. “I’ve seen much worse. You have no pain, and you can maintain an erection, so you’ll be able to penetrate.”
Saying this, he turns and leaves his office. And that’s it.
Although the news he has given me is encouraging—I have a mild case of a condition that does not render me dysfunctional and that will probably improve—I leave his office feeling incredibly shaky: fearful, anxious, spent. The bill, which includes a forty-five-dollar charge for “surgery” (the rectal exam? the lifting of the penis?), comes to over five hundred dollars.
From my journal, the next morning:
Not a personal note in the entire exam, he never shakes my hand, never explains why he is doing anything he does, never responds to any attempts on my part to make the rel individual or personal… Dealing with my cock, but not a word re what peroni’s is, what might cause it, what prognosis might be, doesnt ask if i have any questions…gives me a prescription without telling me what it is, and why i should take it: bam bam bam…i could be a stone he is testing and prescribing for…i am just a body to be measured and analyzed, divorced from a man who might have some anxieties, fears, questions about having his penis bend downward…
“I come away more fearful and anxious,” I write, “and I come away thinking: I need another opinion.”
So I call the doctor Phil’s friend in Denver recommended, and a week later meet with Dr. Arnold Melman, chief of urology at Montefiore Hospital in the Bronx.
Dr. Melman’s nurse has me give a urine sample, after which I wait in Dr. Melman’s consulting office, which is large and handsomely appointed: drawings, maps, African sculptures. Dr. Melman comes in, shakes my hand, talks with me for a while, takes a history. Then we go into another room, where he asks me to drop my pants. He sits on a stool, examines me while I stand, and seems surprised by what he finds.
“Hmm,” he says. “You have quite a lot of disease in there.”
What he finds curious, he adds at once, is that the scarring in Peyronie’s disease is usually near the outside of the penis, but the scarring in mine is near the center, next to the urethra. Back in his office, he draws a picture of my penis, and of the scarring, asks more questions about my medical history and, especially, about events of the last year or two. He is puzzled, asks more questions, looks at his notes, and then nods.
“Of course,” he says. “The bypass surgery! The scarring is probably due to trauma from the catheter they inserted during your surgery. It makes sense. That would explain why the scarring runs along the urethra.”
I tell him that Dr. Haight told me I had a mild case of Peyronie’s, and that on Dr. Haight’s recommendation I’ve been taking two dozen tablets of PABA a day. Dr. Melman declares that there is absolutely no evidence that PABA has any effect on Peyronie’s—that this theory was disproven years ago. I tell him I am taking 400 units of vitamin E a day. He tells me to take five times as much—2,000 units a day—and he says he is going to prescribe something else: colchicine.
Colchicine, he explains, is a medication that breaks up scarring by dissipating the molecules in the collagen—the fibrous deposits we hypothesize are causing the problem. Since blood has trouble getting around these deposits, the penis, when blood surges into it and causes it to become erect, only stays erect to the point where the collagen deposits lie; the absence of blood stimulating the erectile tissue at these points is what causes the penis to bend, sometimes to a ninety-degree angle.
Frequently, the condition causes considerable pain and makes sexual intercourse difficult or impossible. In some cases, when collagen deposits encircle the penis so that blood cannot rise to the shaft’s full length, the penis will balloon out to the point of the scarring, and will remain limp for the remaining portion. In such cases, the only remedies are surgery—removing the collagen and transplanting in its place tissue from other parts of the body (a procedure that is rarely successful)—or the use of prostheses.
Colchicine is often used for gout, Dr. Melman informs me, and it has few side effects. If I start to have diarrhea, though, I am to stop taking the medication at once and to call him.
He asks if I have experienced any pain (I say no), or if my penis has become smaller (I say no again—not as far as I can tell), and he tells me he doesn’t think things will get worse. He hopes they will reverse, but if they should get worse, there is an injection he can give me, or a simple surgical procedure he can perform, though he would do either of these things with great reluctance, and is inclined to wait and see if the colchicine does the job.
When, in his office, he asks me about myself—why I am in New York, why I moved down from Massachusetts, and I say that I’m a writer, he tells me about a book he has written (a woman’s guide to men’s urological problems) and how he is having trouble finding a publisher. He asks me to come back in six weeks but to call immediately if I notice any significant changes.
The bill for his services is one hundred and fifty dollars. When I take out my wallet, to give his secretary my five-dollar insurance copayment, she waves it off and tells me to forget it.
Six weeks later, when I return and Dr. Melman examines me, he is pleased to find that the scarring seems to have diminished. How can you tell? I ask, and he points to the drawing he made last time, after which he makes a new drawing.
“You’re a very lucky man,” he says, and then: “But don’t you think it’s improved?” he asks.
I say I do, but that he’s the doctor. He shakes his head sideways, tells me that I am the best judge of whether or not the scarring has diminished.
“Look,” he says. “Colchicine is a nonspecific medication. You might have improved without any medication—if we’d done nothing at all. We really don’t know. Still, it’s probably a good idea to continue with the colchicine.”
He asks if I have experienced any difficulties during sex, and I tell him I haven’t had sex with anyone since the last time I saw him, but that I have hopes. We talk about books and publishers, and he asks how my writing is coming along. I say that it seems to be progressing, inch by inch and page by page.
“I’ll probably include something in the new book about Peyronie’s,” I say.
“Could prove interesting,” Dr. Melman says. “It’s what President Clinton has, you know—the famous distinguishing characteristic Paula Jones alluded to.”
“I haven’t written this part of the book yet,” I say, “but if I use chapter titles, I think I know what I’ll call this one.”
He smiles. “Yes—?” he asks.
I smile too, and give him the title: “‘They Saved My Life But Bent My Dick.’”