Open Heart

by Jay Neugeboren

  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.”
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br />   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 doct
or 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.