I knew getting prostate cancer at 48 would change me. I had no idea how much. - The Boston Globe
Dazed, I step inside and drop my bag. Without even saying hello, Michelle takes my face in her hands and kisses me. Like, really kisses me. This is new, I think. I don’t know where the children are. If I have to guess, they’ve been sent away with clear instructions not to return any time soon. Still without a word, Michelle leads me up the stairs and into our bedroom. We won’t leave for hours.
Thus began the Year of Sex, an unbridled romp that put a merciful end to our long trek across the conjugal tundra. Like many couples, Michelle and I had succumbed to the middle-age cliché of a sex-lite marriage. We raised the kids, focused on work, paid the cable bill, and dutifully changed the oil every 3,000 miles.
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This was a return to our early days. Michelle and I met in college and started living together in our 20s. For a few years, we bunked above a pottery studio in rural Maine, a tiny village with a gas station, a post office, a cemetery, and the distinction of being the last municipality in America to use crank phones.
We were broke but in love. Michelle worked as a potter’s apprentice, making coffee mugs and quiche plates. I was a correspondent for the Lewiston Sun Journal, chronicling humdrum town meetings for $20 a story. The pottery studio was primitive — it had an outhouse and virtually no heat — but enchanting. We’d wake up on winter mornings to find a thin frost on our blankets.
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Now, two decades later, Michelle and I were married; we had two young kids, a house in the burbs, and hectic jobs that left little time or energy for intimacy. Our son, Beckett, was 8: Hilarious, handsome, and he still put his arm around me in Stop & Shop. Our daughter, Julia, was 12: Smart and incisive. She wasn’t, as the parenting books predicted, an unrecognizable mean-ager. Michelle was a social worker, helping kids with complicated lives try to keep it all together. I was an entertainment writer for the Globe, which meant I tracked Matt and Ben’s every move and sometimes stayed out late drinking mediocre chardonnay at parties.
When I returned home from the wedding to find Michelle waiting, wantonly, I was bewildered. What had changed? The paperback copy of Fifty Shades of Grey on the floor was a clue. Michelle had always been a prolific reader with an appetite for erotica. But not lately. The well-thumbed copies of Anaïs Nin’s steamy short stories had disappeared from her nightstand years ago. Yet during a recent family vacation, she’d discovered some raunchy paperbacks in our rental house, and was reminded how much she enjoys cuff-linked billionaires and well-built farm boys named Hutch.
It was probably only a matter of time before our sex life returned, but the bawdy books were the jump-start. “Any woman who has kids knows there’s a point where it’s no longer full-body parenting, that you get a little space, physically and mentally, and you can start to reclaim parts of yourself,” Michelle says. “I was, like, I’m going to start working on my own libido, my own desire, because you can’t change someone else. You have to change yourself first and allow for the opportunity to change.”
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All I had to do now was keep up with Hutch. I could do that, right?
A year or so into our renaissance, a routine blood test revealed the possibility — just the possibility, my doctor stressed — that cancer was lurking in my prostate. He recommended I get a biopsy. Prostate cancer? Isn’t that something geezers get? I was 48. Doesn’t matter, I was told. Prostate cancer is absurdly common: Nearly 200,000 men in the United States are diagnosed with the disease annually, and about 30,000 die from it, making prostate cancer the second leading cause of cancer death among American men, after lung cancer.
One in nine guys will be diagnosed with prostate cancer during his lifetime. Many more have it and don’t even know. “If we took a hundred guys your age off the street, and magically took out their prostates, chopped it up, looked under the microscope,” says Dr. Mark Pomerantz, my oncologist at the Dana-Farber Cancer Institute, “we’d find prostate cancer in a majority of them.” The truth is, most men will either die with prostate cancer or die from it. It’s that prevalent.
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I was dumbfounded. All I knew about prostate cancer was that my father had been treated for it, so I was at increased risk. But he was old. The average age at diagnosis is 66. I didn’t think I had anything to worry about. At least not yet.
I started Googling frantically. I learned some prominent men have survived prostate cancer, including Colin Powell, Sidney Poitier, and Robert De Niro. I found out later that Ben Stiller was diagnosed when he was just 48. And that trans people should also beware. Prostate cancer doesn’t care how you identify. If you have a prostate — and even trans women who’ve undergone gender confirmation surgery typically still do — you’re at risk.
It took barely two minutes of online sleuthing to discover that the primary treatments for prostate cancer — surgery or radiation — can doom a man’s sex life or put him in diapers. Or both. I shuddered when I read that prior to 1982 — hardly the Middle Ages — every guy who had surgery to remove his prostate was rendered impotent.
Every. Single. Guy.
I took a deep breath and stepped away from the computer. I’m embarrassed that I knew so little about prostate cancer. And I’m not the only one. Most men — even those who, like me, watched their father, uncle, or grandfather contend with it — know almost nothing about the disease. Consider this: I spent a week on the Cape with 12 friends from high school, all smart guys. None of them could tell me what a prostate is or what it does. Not one. When I asked my friend Sam, a musician whose father died of prostate cancer, what he knows about the walnut-size gland, he said: “Not a goddamn thing!”
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Prostate cancer kills nearly as many people each year as breast cancer, but men don’t talk about it. Women talk about breast cancer. They march. They rally. They wear pink and lobby Congress. Since Betty Ford went public with her diagnosis in the 1970s, women have raised hundreds of millions of dollars each year for breast cancer awareness and research. Their candor continues to save lives as women across the country now get regular breast exams. The stigma that kept the disease in the shadows is gone.
Men? Generally, we’re different. We’ll do anything not to discuss prostate cancer. Confronting vulnerabilities isn’t our thing. But it’s more than that. This disease, and its treatment, can affect the function of a man’s penis. And in a culture that equates masculinity with unrelenting erections, that prospect is terrifying. Take our legs in a gruesome chain-saw accident. Let some rabid animal chew our arms off. Don’t mess with the penis. Please.
Just the idea of impotence makes most men squeamish. You want to know what douses sparkling dinner party conversation faster than a mention of prostate cancer? Not much. Trust me.
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“We’re as tightly sealed, if I can put it that way, as we’ve ever been since Genesis, since we were expelled from Eden,” Stephen Fry, the British actor, author, and comedian, tells me. "We still have this — the good French word is pudeur — this shame. There are so many things that a human being should be ashamed of: cruelty, lies, deceit, duplicity, betrayal, abuse, all the things we do wrong.
“But having a bottom and genitals and all that pertains thereto is not something of which we should ever be ashamed and for which we should ever apologize,” he says.
Fry’s right. In 2018, he posted a video on YouTube announcing that he’d been treated for prostate cancer. The 13-minute clip is frank, funny, and informative. Fry calls his cancer an “aggressive little bugger,” and pinpoints the location of the pernicious gland using an exquisite British-ism for penis. “It sits between a man’s bladder and his old feather,” he says. Rarely had anyone spoken so openly about prostate cancer, let alone someone like Fry, who has 12.6 million Twitter followers. The video went viral, and the effect was dramatic. Overnight, according to Britain’s National Health Service, there was an extraordinary spike in the number of men in the United Kingdom getting their PSA checked.
I’ll pause right here to say that if you’re a guy of a certain age who doesn’t know what PSA stands for, you need to pay more attention. It’s short for prostate-specific antigen, a protein produced by the prostate gland. Doctors used to rely on digital rectal exams to detect prostate cancer. They’d snap on a rubber glove, make a bit of chitchat, and then — oof! — tunnel a well-lubricated finger or two into a man’s rectum, feeling his prostate for hard bits that might be a tumor. If you can’t remember whether you’ve had a digital rectal exam, you haven’t.
But these probes aren’t definitive, so prostate cancer often went undetected. At least until men had symptoms (including frequent urination, weight loss, and back pain), and by then the cancer usually had metastasized and the prognosis was grim. That’s how rock ‘n’ roll iconoclasts Frank Zappa and Johnny Ramone and poet Langston Hughes died preposterously young of prostate cancer.
Men still endure digital rectal exams, but there’s a more accurate way of spotting a problem now. Since the early ’90s, when studies showed a link between prostate cancer and an elevated PSA, doctors have used a simple blood test to screen men for the disease. I got my PSA checked for the first time when I was 45. The number was high for someone my age, but my primary care doctor, James Morrill, wasn’t overly concerned. He explained that it can fluctuate for reasons unrelated to cancer. For example, riding a bike can raise your PSA. So can sex. Most prostate cancer is also slow-growing. Dr. Morrill suggested we just keep an eye on my PSA, checking it every three months or so.
Not all doctors are so deliberate. Throughout the 1990s and 2000s, many physicians in the United States ordered immediate biopsies when a man’s PSA level ticked up even slightly. But prostate cancer is pervasive: If you look for it, there’s a strong chance you’ll find it. And that’s what happened. There was an explosion of prostate cancer diagnoses. In many cases, the disease was nonaggressive and posed no urgent risk, but an untold number of men, fearing for their lives, raced to get treatment.
They subjected themselves to a brutal operation or got blasted with radiation, which left legions of men impotent and incontinent. “Urologists and radiation oncologists disgraced themselves in the early decades [of PSA screening],” says Dr. Anthony Zietman, my radiation oncologist at Mass. General Hospital. "We didn’t know what we were doing. We used the word ‘cancer’ and ‘cancer’ led to treatment at a time when the radical prostatectomy was — I hate to use the word ‘barbaric,’ but I’m going to use the word ‘barbaric’ — and radiation was crude.
“We did an enormous amount of damage to an enormous number of men who really should have been left alone,” Zietman says.
In other words, PSA screening can lead to needless, harmful treatment. That’s why opinions vary on its value. Doctors in the United States typically start checking men at age 50 — earlier for guys, like me, with a family history, or men of African descent, the population with the highest incidence of prostate cancer. Doctors in Europe, concerned about overtreatment, take a more restrained approach to PSA screening. In England, for example, where Stephen Fry lives, the National Health Service doesn’t recommend screening, leaving it up to men and their doctors to decide if it’s something they want to do.
In my case, we watched as my PSA climbed incrementally for about 18 months before Dr. Morrill, uneasy about waiting any longer, suggested I get a biopsy to see what was going on. I was scared of dying. Of course. But what kept me up at night was the prospect of never getting an erection again. Call me shallow, but that’s what I was worried about.
Was my anxiety unreasonable? Dr. Drew Pinsky says yes. I discovered Pinsky — known professionally as Dr. Drew — in the ’90s when he dispensed sex-and-relationship advice on a late-night radio show called Loveline. In 2013, he was treated for prostate cancer. Pinsky says men’s fear of the disease is “cartoonish” because treatments have improved and there are ways to mitigate bad outcomes.
But Pinsky concedes that we’re hard-wired to protect our penises. So much so, he says, that one of the first things men do when they come out of a coma is reach for it. Think about that. “It’s so present in their neurobiology that there’s almost a circuit that gets expressed as soon as consciousness is in its infancy,” Pinsky says.
For me, though, it wasn’t just a biological impulse. There was a lot at stake. I might live another 40 years. I had the kids and Michelle. And after two decades of marriage, our sex life was cranked up again. The prospect of prostate cancer? That’s not something Hutch ever had to worry about.
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It’s a restricted phone number. I’m headed home from work, moving inches per hour in the O’Neill Tunnel, a miracle of modern engineering that suddenly feels like a mine shaft. I’m anxious. Desperate, actually. My cellphone is vibrating on the passenger seat. I should take the call, but I don’t want to. It’s my doctor. I know it.
Six days earlier, I’d been in a windowless hospital room, lying on my side with my ass exposed. I’m clutching Michelle’s hand. It’s not required that your spouse be present when you get your prostate biopsied, but I’m glad she is. I’ve sweat through my blue johnny, and the procedure hasn’t started yet. An anesthesiologist glides something resembling your grandmother’s longest knitting needle into my rectum. A handsome, young urologist explains — too matter-of-factly, it seems to me — that after my prostate is numbed, he’s going to clip 12 tiny pieces of it.
“You’ll be out of here in 20 minutes,” he says. “No big deal.”
“You’re not going to buy me a drink first?” I joke.
Michelle and the nurse laugh. The urologist does not. Another gadget then penetrates my pelvic floor. It feels like a slow-motion stabbing. Somewhere over my shoulder a machine makes a loud clapping sound each time tissue from my prostate is snipped. Twelve excruciating claps. Squeezing Michelle’s hand, I hold my breath and close my eyes.
Afterward, as I’m putting my pants on, the nurse says my doctor will call with the results. She looks at me and smiles — unconvincingly, I think — and I wonder if she already knows.
Now, at a standstill in my car, I grab the phone before it goes to voice mail.
“Hello?”
“Hi, Mark.”
It’s Dr. Morrill. He clears his throat.
“Hello, doctor.”
He doesn’t waste time. Dr. Morrill says I have prostate cancer. And I should do something about it fairly soon.
I snarl an obscenity and thank him for calling. I then toss the phone on the floor.
I grip the steering wheel with both hands and stare straight ahead. I can feel my face get flush. My heart pounds. I want to move. Anywhere. But it’s all brake lights.
I have cancer.
PART 2
I never thought I paid attention to popular notions of masculinity. I’m someone who enjoys browsing expensive shoes online — I’ve currently got my eye on a pair of leather dress boots with a buckle. So I don’t relate to the dusty Marlboro Man or the rugged, flannel-clad fellow hauling rocks in his pickup. I’m just not Ram Tough, I guess.
But when you’re diagnosed with a disease whose treatment could make you impotent, you begin to resent the clichéd image of the American male — the well-built rake with the emotional intelligence of a freezer pack. If that’s the masculine ideal, no wonder men don’t talk about prostate cancer. Guys weaned on a steady diet of Clint Eastwood movies or the boozy exploits of Don Draper don’t want to dwell on a disease that can diminish them down there. From an early age, men get the message that our penis is Excalibur, and anything that threatens the mighty sword, well, no thanks.
I’m not exempting myself. After I was diagnosed, I didn’t want to dwell on it, either. And it didn’t occur to me to go to a prostate cancer support group. Desperate as I was for information, I imagined sitting in a roomful of dudes, many of them 20 years older than me, eulogizing our once-indomitable erections.
But as I was thinking about telling this story, I did stop by a few meetings and — guess what — the vibe was friendly and the guys magnanimous. There were mostly white-haired men talking, without shame, about incontinence, erectile dysfunction, and, yes, feelings. They didn’t want to belong to this club, but they were grateful not to be alone. I regret not going sooner. There’s so much I didn’t know. Connecting earlier with men in my situation would have helped.
Instead, I studied prostate cancer on my own. When I wasn’t reporting and writing stories or aggregating celebrity news to keep my editor happy — think Ben Affleck’s magnificent back tattoo — I read everything I could about the disease and its treatment. I was frightened, but also weirdly fascinated. The prostate is in there — JetBlue does not fly direct — so how would doctors eliminate the cancer without damaging the rest of me?
The job of the prostate was a revelation to me: In the delicate prose of WebMD, it produces the fluid that “nourishes and protects” sperm. In other words, the muscular little gland helps make — and ejaculate — semen. How did I never know this? Not that you asked, but I had my first orgasm in the seventh grade, after finding a magazine in the back of my brother’s closet featuring soft-focus photos of a curvy Sophia Loren look-alike. I dashed into the bathroom and . . . Bang! My prostate has been logging long hours ever since.
After my diagnosis, I was concerned about survival, yes, but I also wondered: Would I still be able to have an orgasm if my prostate was removed? A strange question, I know, but it felt urgent.
First, though, Michelle and I had to talk to the children. Thankfully, this wasn’t a Daddy-only-has-a-year-to-live type of cancer. Caught in time, prostate cancer is highly treatable. About 90 percent of patients whose disease is diagnosed at an early stage live at least 15 years after treatment. But it’s still cancer, and no one wants to be in that 10 percent.
A few days after the phone call from Dr. Morrill, I was working from home. Julia, who was in eighth grade at the time, returned from school and we sat together on the couch. I told her I’d had a test that revealed something called prostate cancer. There are worse diseases, I explained, but I’d probably need treatment and it might be unpleasant. Julia fidgeted as her eyes filled with tears. She gave me a hug that lasted a long time and then hurried upstairs.
The reveal with Beckett, who was in elementary school and not prone to mulling big ideas like mortality, was less intentional. At the dinner table that night, Michelle and I talked about the diagnosis and next steps. Beckett, his mouth full of Trader Joe’s pork dumplings soaked in soy sauce, listened. The look on his face said: Something is going on with Dad, but, damn, these dumplings are tasty.
I confess I was pretty focused on myself, so it’s hard to know what effect the news had on either of them. I felt like they still expected me to make them laugh, and, more often than not, I did — at least for a while. But what were they truly feeling? I discovered later that Julia wrote a vignette for an English class about our conversation. This is in part what she wrote:
You told me that you had cancer. And I just sat there looking at the frayed fabric of my backpack wishing you hadn’t said those words. And wishing you had told me anything else, any other horrible thing, just not that . . . Our house became the glass house. And you and me and mom and Beck were small China bowls so delicate they could shatter at even the slightest touch.
This is something I learned about cancer: One person in the family gets it, but everyone’s life changes.
Michelle and I are in a cramped office at Mass. General Hospital, which invites newly diagnosed prostate cancer patients to sit with a surgeon and a radiation oncologist to discuss treatment options. It’s kind of like a job interview: The specialists explain their respective approaches to removing the cancer — and the possible outcomes, good and bad — and the patient asks questions. Before we start, the nurse leading the meeting asks me to rate my sexual function today, at 48, compared with when I was 21.
“On a scale of one to 100,” she says.
“Hmm,” I reply. “Maybe 90?”
Silence. I look at Michelle, who’s staring at the floor.
“Um, no,” Michelle says finally. “More like . . . low 80s.”
Fine, that’s still a B.
Some charlatans on Reddit swear prostate cancer can be cured by eating a huge amount of shark cartilage or habanero peppers, but I’m not willing to test their claims. I’m fortunate to have health insurance and several highly-regarded hospitals nearby. Michelle and I conclude that I’ve got three legit treatment options: radiation, surgery, or nothing at all. The first two, I’m told, will affect my sexual function, at least temporarily. A graph on the wall shows how.
In the case of radiation, the black Sharpie line, which I view as a proxy for my penis, sags steadily over a period of years. That’s because high-energy beams of radiation bombard the cancer, but also kill healthy tissue, which erodes potency and, potentially, causes more cancer. In the case of surgery, the line nose-dives, alarmingly, to zero and then — best case — springs back to normal after a year or so. Choice No. 3 would be to watch and wait — what’s called “active surveillance.” I’d remain Mr. 80 Percent, at least until age causes its inevitable droop, or another biopsy reveals more cancer. Michelle and I look at each other. How about door No. 4, Monty?
My father had opted for a less aggressive approach. He could afford to. He was 70 when he was treated. Radioactive pellets were implanted in his prostate; it’s called brachytherapy. Even if the pellets didn’t incinerate every bit of the cancer, the doctors said whatever was left was unlikely to kill him before something else did. They were right. My dad’s 84 now and doing well.
He and I didn’t speak about his treatment, or the effect it had on his body, at the time. (Though I do recall my mother saying he complained his scrotum turned a burgundy color.) Whenever I’d ask my father how he was feeling, the answer was always the same: Fine. I know now that’s the standard response from guys going through this. Translation: I don’t want to talk about it.
In deciding what I should do, I had to consider not only my relative youth — I might live decades more, which made radiation dicey — but also my Gleason score. That’s the grading system that doctors use to evaluate the aggressiveness of a patient’s prostate cancer. Mine, on a scale of 1 to 10, was 7, which is deemed “intermediate risk.” Michelle and I considered “active surveillance” — checking my PSA every three months or so. But the impulse to get the cancer out was powerful. We felt like surgery was the best choice.
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First do no harm, right? That’s the solemn pledge medical students make when they become doctors. But, for nearly a century, the opposite was done to men with prostate cancer. Generations of guys diagnosed with puny, indolent cancer panicked and sought aggressive treatment. Unfortunately, overzealous urologists obliged, performing crude excisions with horrific consequences.
Some patients didn’t make it out of the operating room, dying of massive blood loss. Others — about 25 percent of guys who had a prostatectomy — lost bladder control and had to wear diapers for the rest of their lives. And, until the early 1980s, every man who had his prostate removed staggered out of the hospital impotent. That’s right, 100 percent. How was that possible?
Simple: Urologists didn’t know any better. Prostatectomies have been performed since 1904, yet the plexus of fibers surrounding the prostate had never been charted. Surgeons presumed — yes, presumed — that the nerves controlling the hydraulics of the penis ran through the prostate. If your prostate was removed, impotence was just an unfortunate side effect.
Enter Dr. Patrick Walsh. He discovered that, in fact, the nerves run outside the prostate. And on April 26, 1982, he pioneered a painstaking surgical procedure that, done perfectly, spares the nerves and preserves a man’s erection. Dubbed “the Michelangelo of prostate surgery” by a colleague, Walsh became something of a celebrity, the go-to urologist for high-profile men with prostate cancer. His patients included tennis star Bobby Riggs; Washington, D.C., Mayor Marion Barry; King Baudouin of Belgium; and, in 2003, John Kerry, who stopped campaigning for president to have his prostate taken out. In total, Walsh operated on 4,569 men during his career.
For three decades, Walsh was director of the Brady Urological Institute, a renowned hospital at Johns Hopkins University named for “Diamond” Jim Brady, a meaty-faced New York financier who, in 1912, bequeathed a bundle of money to Hopkins after its doctors cleared an obstruction in his bladder using a medieval-looking rod with a menacing hook at the end.
It’s a wonder that only Brady’s bladder was obstructed. Legend has it “Diamond” Jim could down two dozen oysters, six lobsters, two canvasback ducks, a sirloin steak, and two bowls of green turtle soup in one sitting. “He was once told of a Texan with a great appetite whose favorite thing was a 30-pound turkey stuffed with chestnuts,” Walsh tells me during a visit to the institute in Baltimore. “And Brady said, ‘How many can he eat?’”
I’d never heard of Walsh before I was diagnosed, but as Michelle and I researched our options, his name kept coming up. Oncologists and surgeons we met with spoke of him with an admiration bordering on awe. At 82, Walsh no longer operates, but he casts a long shadow. At the Brady Institute, his portrait hangs alongside an oil painting of the hospital’s first director, Hugh Hampton Young, who’s considered the father of modern urology because he performed the first prostatectomy.
In person, Walsh is genial and live-wire alert. He mentors young medical students and still checks in with men whose prostates he removed. “I gave everyone my home telephone number. I talked to them every three months for the first year [after surgery] and I continue to follow them to this day,” says Walsh, wearing a crisp white lab coat and snazzy tie. “That’s 20,000 telephone conversations I’ve had with people.”
Walsh made his remarkable discovery on February 13, 1981 — his 43rd birthday — while visiting a friend, a retired urology professor, in the Netherlands. Instead of touring windmills, the two men proceeded to a laboratory, where they dissected an infant bladder. Walsh asked his friend if he knew where, precisely, the microscopic nerves responsible for erections are located.
“He said, ‘I’ve never looked,’” recalls Walsh.
Together, they did.
“And three hours later, there they were — outside the prostate. So bingo!” Walsh says.
Walsh has told this origin story many times over three decades — at countless medical conferences, to peers and patients, on TV talk shows — and yet as he and I are sitting together in the Brady Institute’s small, wood-paneled library, he’s on the verge of tears. “You can imagine if God installed these nerves in Adam, and no one had been able to find them up to this moment, this was an important finding,” he says, his voice trembling.
I’m speechless. It turns out this man of science is also a man of faith, a devout Catholic who believes he was given the responsibility to be the hands of God — literally — in the operating room. On his office wall, Walsh has a framed print depicting an operating room illuminated by Christ’s halo. The surgeon in the painting is standing over the patient. Beside the surgeon, guiding his scalpel, is Jesus.
“If you want to conquer what seems to be an incurable and unconquerable disease, those who do best actually are called by something higher. There’s a higher purpose,” says Dr. Jonathan Simons, an oncologist in Santa Monica, California, and the president and CEO of the Prostate Cancer Foundation, which has raised more than $830 million to support research around the world. “Pat is a very, very committed Roman Catholic — particularly in the Jesuit sense of service to those in medical need.”
Walsh tells me he was “chosen to look after God’s children with prostate cancer,” and the results have been satisfying — for everyone. “When [my patients] finally die, their wives write me beautiful letters,” he says. “'Dr. Walsh, every time we made love, we thanked God for you.'”
The nerve-sparing procedure, which Walsh fine-tuned over 30 years, is now the way prostatectomies are done. But separating the prostate from disparate nerves the diameter of a human hair is delicate work, and not all doctors are created equal. For me, finding a great surgeon — someone who’d performed the operation not hundreds of times, but thousands — was critical. And I learned I could help myself, too. Doctors told me the odds of being potent and continent after surgery would improve with kegels.
Don’t know what a kegel is? Ever clenched your undercarriage to avoid passing gas in a crowded elevator? You’ve done a kegel. It’s a pelvic floor exercise. Stephen Fry did them before his surgery. He compares it to trying to pick up a Ping-Pong ball with your anus. I got very good at kegels. I did them all the time. I’m kegeling right now.
The nerve-sparing surgery is done in one of two ways. The so-called open method involves a large incision below the navel — enabling the surgeon to get a good look at what Walsh calls the “precarious terrain” around the prostate, and room enough to carve out the gland by hand. The robotic method is less invasive and the recovery time shorter. The surgeon pilots mini robotic instruments passed through keyhole-size incisions in the abdomen.
Michelle and I met with three surgeons. In the end, we chose Dr. Adam Kibel, the chief of urology at Brigham and Women’s Hospital in Boston. Kibel was an early adopter of the robotic method, and he’d performed the operation a few thousand times. (My only misgiving was the trademarked name of the robot: the da Vinci Surgical System, which sounds like a bad ’80s band.) We liked Kibel personally — he’s a nerd, in the best sense — and he’d spent two years training with Dr. Walsh at Johns Hopkins. If I couldn’t get Obi-Wan Kenobi to remove my prostate, I wanted one of his Jedi disciples doing it.
Still, I was a wreck when Michelle and I arrived at the hospital before dawn one morning in February 2014. I’d done my homework, but I had no idea how this was going to go. Michelle gave me a kiss and I was wheeled away.
When I came to, I was wrapped in a warm blanket. A machine had rummaged around my pelvic floor for two hours. I felt woozy and wracked. Kibel told Michelle the procedure went well, but, he said, ominously, my prostate was “boggy” — by which he meant mushy. That made a precise extraction difficult. “People think the prostate is surrounded by Saran Wrap, and you just have to peel off the Saran Wrap,” Kibel says. “It’s not like that. The prostate ends and the other tissue begins. And, unfortunately, the other tissue is the nerve.”
He’d faced a dilemma in the operating room. He could have gone wider — taking more tissue — but that would likely have wiped out the nerves. In such situations, Kibel says, he pauses to remind himself what the patient and their partner prioritized beforehand. Michelle and I had been explicit that preserving sexual potency was important. So Kibel stayed the course, taking as much of my boggy prostate as he could while still sparing the nerves. The pathology report would come back in a week or so, and we’d know then if he got it all.
I was sent home with a catheter, painkillers, and a prescription for Cialis, a medication used to treat erectile dysfunction. That’s weird, I thought. Even if I could have sex — and, let me tell you, I could not — I was in no mood. Kibel says he prescribes Cialis, or other ED meds, to increase the blood flow to the penis, which helps resuscitate sexual function after the trauma of surgery. If it also encourages patients to get back in the proverbial saddle ASAP, he’s cool with that, too. “I’m treating a patient who has prostate cancer,” he says. “But when the patient has sexual dysfunction, you’re treating the couple.”
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At home, Michelle tries to make me comfortable, or as comfortable as I can be with a rubber tube draining my urine into a plastic Pop Tart-shaped bag. She fixes me yogurt parfaits and gives me long foot massages. We’ve put a television in our bedroom for the first time and are binge-watching The West Wing. I’m hoping that Aaron Sorkin’s rat-a-tat dialogue will lift my spirits, or at least distract me.
A week after surgery, we’re in bed watching Season 2 when my cellphone begins vibrating. Another restricted number. It’s Dr. Kibel this time. The pathology report isn’t great. We didn’t get it all. I sigh. We agree to talk in a few days.
“Thanks,” I mutter weakly and hang up.
I put my hands over my face. I’d subjected my body to a punishing surgical procedure and it didn’t work. Now, I’ll have to endure months of radiation and hormone therapy. It feels like starting over.
I turn off the television and, with no idea how bad it’s about to get, begin to cry.
PART 3
In those inevitable “why me” moments, I wondered if I’d done something to invite cancer. Your mind goes to strange places in the middle of the night. Had I made my prostate boggy as a teen by devouring the sexy passages of my mother’s paperback copy of Erica Jong’s Fear of Flying? Had all those solo play dates with the Sophia Loren look-alike left me vulnerable?
Well, no. What I’ve learned is there’s no one cause of prostate cancer, but some men do have more reason to worry than others. I was one of them. My father had the disease, and family history is a significant risk factor. So is race. Black men are 76 percent more likely to develop prostate cancer than white men and twice as likely to die from it. Why the disease hits Black men so hard isn’t entirely clear — genetic susceptibility and diet play a role — but the fact that they die at double the rate of white men is appalling. If we know Black men get the disease disproportionately, why is their mortality rate still so high?
I ask Tom Farrington, who’s been raising the alarm about prostate cancer in the Black community since his own diagnosis two decades ago. A retired IT executive in Boston, Farrington is founder of the Prostate Health Education Network, a nonprofit working to reduce the racial disparity in treatment and death. The sad truth, Farrington says, is that most Black men have no idea they’re at high risk for prostate cancer and, as a result, don’t get their PSA checked. Farrington concedes he didn’t know — even though his father and both grandfathers died of the disease.
And if they do know, he says, many Black men will delay going to a doctor. Often, that’s because they lack insurance. But also, Farrington says, it’s because Black men harbor a deep mistrust of the health care system. Some still remember the deadly and shameful Tuskegee syphilis study, when the US Public Health Service allowed hundreds of Black men with syphilis to go untreated — for 40 years — so scientists could study the long-term effects of the disease. “I would certainly use the word ‘suspicion,’” Farrington says of the attitudes of Black men toward the health care system, adding that providers and hospitals can — and should — do more to educate Black men about the risk they face.
I agree. But men bear some responsibility. We can and should educate ourselves. The reluctance to talk about prostate cancer, for whatever reason, is an epidemic all its own. If I’d been able to overcome the awkwardness of talking to other men in my situation, I would have been better off. I would have known what to expect. No question. “Silence kills,” Farrington says. “Silence really kills. If you’re silent, not only are you not sending out information, you’re not getting information back. And that lack of knowledge kills.”
Of all the things I didn’t know, the strange relationship between testosterone and prostate cancer was the most surprising. I had no idea that the male sex hormone that gives men bulging biceps, body hair, and, if we’re lucky, a voice like Lou Rawls, is the food that prostate cancer needs to grow. I learned what that meant when Michelle and I sat down with Dr. Kibel a few weeks after surgery.
He said there was a chance that the cancer had escaped the margin of my prostate so I’d need radiation therapy — five days a week for seven weeks — to eradicate whatever rogue cells survived the operation. But he wanted to wait. Wait? I wasn’t in any hurry to abuse my body more — this time with X-rays aimed at my nether region — but I was desperate for this nightmare to end.
In cases like mine, Kibel explained, it’s best to blitz the leftover cancer when the cells are at their weakest. First, he said, we needed to remove testosterone from my body to starve the cancer. Then we’d drop the hammer with radiation.
Hello, manopause. With a single shot of a testosterone blocker called Lupron, injected in my backside, I’d be temporarily castrated. That’s the word he used: “castrated.” Lupron would order my pituitary gland, which is located in my brain, to halt production of testosterone by my testicles, which are located under my other brain. I was warned there could be mood swings and hot flashes. I might lose muscle mass and memory. I might gain belly fat, grow breasts, and my joints may ache. My testicles could shrink to the size of chickpeas. My libido would almost certainly vanish, and so might my body hair.
I was rattled by the specter of Lupron, but, honestly, I was also perversely curious to see what would happen. Without testosterone, would the idea of wild sex with my wife be no more stimulating than running the dishwasher? In a word, yes.
Within a month of the injection, my carnal cravings pretty much disappeared. It was astonishing. I did some reading and discovered that psychiatrists who treat hard-core sex offenders — pedophiles, rapists, compulsive exhibitionists — sometimes resort to monthly Lupron injections to curb deviant behavior. I was in bad company.
But a lack of sex drive was only one of the side effects. The hot flashes were epic. Without warning, I’d be overwhelmed, as if trapped in a tiny sauna with the door locked. At my daughter Julia’s eighth-grade graduation, the crowded auditorium was like an inferno.
When, mercifully, the ceremony ended, the mob of parents and grandparents pressed itself into a narrow, airless hallway. Julia wanted to take photos with her friends, but I was in agony and demanded we leave. You’ll see your friends tomorrow, I said.
“Let’s go, let’s go, let’s wrap it up!'” I hollered. “I need to go. Immediately.”
We managed to get one picture, which I posted on Instagram. Looking at it now, all I see is the misery I caused my family. Julia has her head down. Because she’s crying.
“I don’t actually have any real photographs of me in my dress from Anthropologie,” she says. “The most dressed up I’ve ever been.”
That wasn’t a mood swing. It was a tantrum. Lupron turned me into a toddler. At home with my family, petty grievances — a misplaced car key or a light left on — would quickly metastasize into full-on fury. Other times, I’d get weepy if a stranger on a TV cooking show ruined their strudel. I felt pathetic, and yet I was powerless to stop it.
Some men whose prostate cancer is so advanced it can’t be cured by surgery or radiation spend years — years — on Lupron. It buys them time by slowing the cancer’s growth. After his death, we learned that French President François Mitterrand had been on Lupron during much of his time in office. That’s unfathomable to me. The world would not have survived if I were a head of state. There were days when the fallout from hormone therapy was so intense I felt only despair.
I eventually managed the hot flashes with acupuncture. But my emotional state was still brittle when Michelle and I went with Meredith Goldstein, my dear friend and colleague, and her sister, Brette, to the Nantucket Film Festival. Meredith was there partly to interview actor Mark Ruffalo, who told her he’d just signed on to star in a movie about the Globe’s investigation exposing sex abuse by priests in the Catholic Church. “I think it’s called ‘The Spotlight’?” Ruffalo said, referring to eventual Best Picture winner Spotlight. I was there to relax on the beach. But on the first day, a gorgeous June afternoon, screenwriter and West Wing creator Aaron Sorkin was speaking at Nantucket High School. Meredith knew I was a fan and encouraged me to go. Michelle was interested, so I said OK.
Big mistake. As soon as we arrived, I wanted to leave. What had been billed as a conversation between Sorkin and MSNBC host Chris Matthews was just a bunch of backslapping. An extended humblebrag about the Oscar-nominated screenplay for A Few Good Men, which Sorkin apparently wrote on cocktail napkins in his 20s, was particularly grating. “This guy is insufferable,” I whispered to Michelle.
I was about to lose my grip and Michelle knew it. It didn’t help that Meredith and Brette were late to pick us up. They’d been enjoying a few rosés at the beachside bar, leaving Michelle and I to broil on the blacktop outside the school. When they did finally pull up, in a car driven by an island friend, I was pacing. I’d been persuaded to do something I didn’t want to do, and now I was furious.
I got into the car and began yelling. “You’re late! Everyone left and we’ve been [expletive] waiting!”
Meredith was stunned and started to cry. Brette wasn’t having it. She screamed at me, lunging over Michelle, who was sitting between us.
“Meredith felt compassionate toward you,” Brette says now. “She felt empathetic and she hates conflict. To see her cry, it triggered a blind rage in me and I was going to straight murder you.”
Michelle kept her head down, hands in her lap. She was crying, too.
That night, I apologized to everyone over dinner — and a lot of wine — but, six years later, I’m still mortified. It’s an excruciating memory and it always will be. When I see Brette now, I hug her tighter than anyone else.
“It was incredibly validating,” Michelle says now. “Brette was speaking what I was thinking. I was, like, ‘Thank you. I’m glad I’m not crazy.’ What she said in that moment was, ‘I don’t give a shit if you have hormones or this or that, you cannot treat people like this.’”
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With my testosterone gone and the cancer in retreat, I started radiation therapy in July 2014. Every weekday morning for seven weeks, I showed up at Mass. General Hospital, changed into a gown, and took a seat with others waiting, joylessly, for their daily dose. Eventually, a young technician appeared and led me into a dark, cold, vault-like room where I lay on a table. The tech straightened my hips, trussed my feet with a Velcro strap, and told me not to move. Then she left, safely watching on a closed-circuit TV monitor in another room as the linear accelerator began humming.
A linear accelerator looks like a gizmo Scotty might fiddle with on Star Trek, but it’s a machine that streams actual radioactive particles into your body with extreme precision. Developed in the 1950s by Russell and Sigurd Varian — the Wright brothers of radiation oncology — the linear accelerator is the backbone of radiation therapy, strafing millions of cancer patients with invisible rays. I stayed as still as I could while the contraption rotated around me. The terrifying thing about radiation — the thing I still worry about — is that it damages healthy cells in the beam’s path, which can lead to profound side effects in the future, including malignancies or, in patients with prostate cancer, a deterioration of sexual function. I guess we’ll find out.
Over those seven weeks, my mood alternated between sullen and severe, but Michelle remained steadfast. Every morning before radiation therapy, I’d find a little gift in my car — Gold Bond powder for hot flashes, a book of short stories — always with a sweet, personal note. Sometimes it was a poem by Galway Kinnell or Sylvia Plath; sometimes the words were Michelle’s.
The tradition, on a patient’s last day of treatment at the Francis H. Burr Proton Therapy Center, is that you ring the “Good Luck Bell” on your way out the door. It’s meant to be a celebration; everyone in the waiting room applauds. But I didn’t feel any delight. I rang the bell meekly and Michelle took a picture. I couldn’t muster a smile.
I wasn’t confident this was over. For a year, it had been bad news followed by more bad news. It felt existential. Now all I could do was wait. Once my body started producing testosterone again, we’d check my PSA. If it spiked, that would mean the cancer had withstood our attempts to kill it and was thriving anew.
I looked for ways to distract myself. One afternoon, I went to see The Imitation Game, a movie about Alan Turing, the English mathematician famous for breaking Nazi codes during World War II. Had I known more about Turing, who’s played by actor Benedict Cumberbatch, I would have picked a different film.
Turing, I learned, was deeply tormented, in part because he was gay, and homosexuality was a crime in the UK at the time. In 1952, despite the role he played in helping defeat Hitler, Turing was convicted of “gross indecency” for having consensual sex with a man. He was given the option of prison or a 12-month term of hormone therapy. Sitting alone in the dark theater, I winced.
“Go to prison,” I muttered. “Please go to prison.”
He didn’t. Turing was injected with estrogen, the primary female sex hormone. It’s what doctors used then to rid a man of testosterone and curb his libido. Turing developed breasts and became impotent. Ostracized and ashamed, he committed suicide two years later.
When the lights came up, I couldn’t move. I blinked back tears as the theater emptied. What if my PSA isn’t zero? What if the cancer returns? Surgery and radiation were no longer options. It would mean more hormone therapy, and I couldn’t bear the thought.
__________
It’s 6 p.m. on a Wednesday in January 2015. Meredith and I are in the basement of a building on the Boston University campus. We’re teaching an entertainment journalism class. Actually, she’s teaching it tonight. I’m in the hallway, furiously refreshing the patient portal on my phone. I’d had a blood test that morning — my first since treatment ended — and the nurse said the results would be posted by the end of the day.
The Lupron fog has lifted and my sexual function is, at last, returning. But I won’t be satisfied until I see my PSA. It should be zero. It has to be zero. Over and over, I refresh the screen as Meredith keeps the class occupied. She gives them a writing assignment — "One Direction has broken up and you have to post 300 words immediately. Go!" — and joins me in the hallway.
Meredith has an idea of what I’m going through. Her mother, who died in 2013, was scanned periodically during treatment for colorectal cancer. “It’s a feeling of, like, please just let this be zero,” she says, remembering that night at BU. “I was a mess, and you were a mess, and yet we both had to be on.”
Finally, a “new lab result” alert appears in my inbox, and I click the link. There it is. My PSA is < .01. I stare at the number. All I can think is, after all the bullshit I’ve been through, my PSA isn’t zero. Why isn’t it zero? What does the less-than symbol mean? I look at Meredith, who’s already Googling “PSA” and “< .01”.
When I get home, I send panicked e-mails to my doctors. In the morning, Dr. Kibel responds. “It is effectively zero,” he says. “This is good news. Absence of cancer.” It is good news. Great news, actually. I should be elated. But I’m not. I know that “absence of cancer” and “cured” are not the same. I’ll have to get my PSA checked again in a few months, and a few months after that, and then again and again, probably forever.
I start to fret, but stop myself. What am I doing? It’s not my body that’s betraying me now, it’s my mind. This is the new normal. Somehow, I need to learn to deal with it.
__________
I like to think I’m a fairly enlightened guy. I know there’s more to masculinity, and sex, than an erection. And yet as I waited for the triumphant return of Mr. 80 Percent, I struggled to reconcile my new and old selves. Progress after treatment, even with the aid of generic Viagra from a Canadian pharmacy, was slow and unsteady.
My first post-prostatectomy orgasm was a reminder that I’m not, in fact, the same man I used to be. Remember, the prostate produces the fluid that protects sperm — in other words, semen. No prostate, no semen. Makes sense, but I don’t recall my doctors ever actually telling me that. As a result, I was shocked — and a little panicked — that first time. The sensation was exactly the same, but it was dry. Nothing came out. Ghost-jaculate!
How did Michelle feel about the new me? What were her expectations? She insisted she didn’t have any, even as she continued to read books with titles like Heat Seeker and Tempting the Beast. She knew something I hadn’t quite accepted: Sex at 50 doesn’t look like sex at 21. I should view this as an opportunity. Our bedroom rituals had changed over time, and they were about to change again. The dusty box of sex toys under our bed was tossed out and replaced with sleek new gadgets Michelle ordered from LELO, a Swedish intimate lifestyle company whose products come with a bold promise of “instant gratification” and “permanent pleasure.” Michelle encouraged me to relax.
She was right to. It was time for me to grow up. But that was easier said than done. I was all mixed up. I made an appointment with Sharon Bober, director of the Sexual Health Program at Dana-Farber. She knew instantly what I was feeling. “It’s not just ‘Am I a man?’ It’s more like, ‘Am I whole? Am I me?’” she says, recalling our first meeting. “'What does it mean to be in this body and still be me when everything feels so different right now?'”
I’d been referred to Bober because she counsels men and women whose cancer has forced them to rethink their notions of intimacy. But I was apprehensive. I didn’t think I was a therapy guy, and here I was in a straight-back chair discussing my sex life with a clinical psychologist.
I explained that, at least temporarily, I couldn’t be my wife’s personal plaything, and that made me feel inadequate. Bober smiled, as if to say, Of course it does. Turns out I’m not alone.
She says our culture sells a myth of eternal adolescence, which is demoralizing to men when age or illness inevitably intervene. “You have to really make an adjustment, and it’s not about trying to be the way you used to be,” Bober says. “It’s a real shift around this whole new frame, this whole new landscape. It’s important to expand the repertoire of what sex is, of what intimacy is, of what it is to maintain physical connection.”
With that in mind, Michelle and I decamped to Mexico in April of 2015, a little over a year after my surgery. For eight days, we holed up in a rustic, wood-frame bungalow in Tulum, a groovy seaside outpost with pristine beaches. It was restorative, in all sorts of ways.
It’s that time again. Michelle and I are in the cafeteria at Dana-Farber. Even at this hour of the morning — it was dark when we left the house — the hospital’s teeming. Some of the patients are old and ashen. Others, tragically, are just kids. But the commitment here to living is striking. It gives me perspective.
There’s an unspoken camaraderie in a place whose patients are all enduring cancer. Outside the hospital, it’s not like that. People are awkward — dudes, especially. They assume I don’t want to talk about my ordeal, and if I do talk about it, they nod politely and look for the exit. I get it. Cancer’s scary. But it’s not contagious. Sometimes I feel like an object of pity. One guy I know actually leans in and whispers “How are you?” every time he greets me. What he means — and what people sometimes ask Michelle privately — is: “Does his, you know, his ... like ... does it work?” Come on, people. The word is penis and yes, it works. But if it didn’t? Our culture would have you believe life’s barely worth living. I realize now that’s nonsense. You’re greater than the sum of your parts — even that part.
I’m drinking coffee in the cafeteria as Michelle fixes a cup of oatmeal. I’m here to get my PSA checked. For the first few years after treatment, we did this every three months. Now it’s every six months. Someday, maybe, it’ll be once a year, but not yet.
I’ve just had my blood drawn, and we’re waiting to meet with my oncologist, Dr. Mark Pomerantz. He’ll tell us if my PSA is still negligible. Michelle and I take these days off from work. If the news is good — so far it has been — we celebrate: We go out for lunch and then goof off. We might get mani-pedis or wander around the Museum of Fine Arts. Once we went to a matinee of The Revenant and the effect was oddly aphrodisiacal. We rushed straight home.
But one of these times the news might not be good, and that weighs heavily on me. I obsess before every visit. I worry this will be the time my PSA goes up. Then what? Julia and Beckett say they know when a checkup is upcoming because I get grouchy. Last summer, we went to my niece’s wedding in Colorado. Even at 10,000 feet, marveling at spectacular mountain vistas, I was fixated on my pending date at Dana-Farber.
More than once, Dr. Pomerantz has told me the worst is over. The longer I go without a detectable PSA, the less likely it is the cancer will come roaring back. I’ll definitely die, he says, but in all probability it won’t be of prostate cancer.
I believe him, I really do. And yet, as Michelle and I are waiting in the examination room, I’m anxious. Michelle knows. She takes my hand and squeezes. Just then, Pomerantz appears. He’s been my oncologist almost from the beginning. He’s a leading expert in the genetics of prostate cancer, but mostly I like him because he seems to have genuine empathy for the dread I feel. He wheels a chair around and takes a seat.
“Hi,” I say calmly. “How’re we doing?”
“Very good,” he says. “Very good. The PSA remains zero.”
“It does?” I say.
“Yes.”
I look at Michelle, who’s smiling. I give her a kiss and sigh. Dr. Pomerantz says there are patients, like me, whose prostate cancer will “show itself” again in the future, but the disease would be manageable at that point. I’m not sure what “manageable” means, but I don’t ruin the positive vibe by asking. Then he’s gone.
As Michelle and I walk arm in arm down the hall, I feel relieved. I can breathe easier. I ask Michelle why I get so worked up before these visits.
“You’re never over it,” she says. “It’s always in the back of your head. You know the only sure thing is that there could be something unexpected.”
“And,” she adds, “you’re a little bit of a baby.”
Michelle steps into the bathroom and I stop at the receptionist.
“Hi there,” the young woman says. “Six months?”
Oh right, my next appointment.
“Yes,” I say. “Six months.”
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EDITOR’S NOTE: Nothing in these stories, nor in the podcast Mr. 80 Percent, should be construed as medical advice in any way. Any questions about prostate cancer, diagnosis, treatment, or any related matter should be directed to a medical professional.
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Mr. 80 Percent podcast writer/producer Kelly Horan and executive producer Scott Helman contributed to this story.
Mark Shanahan can be reached at mark.shanahan@globe.com. Follow him on Twitter @MarkAShanahan
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