Authors: Ken Baker
“No, I can't,” I tell Jane, pulling away.
“Why?”
“I have a girlfriend.”
“So?”
“I can't,” I say. “It's not right.”
â
No matter how potent it makes me feel, bromocriptine is no cure-all. In about 85 percent of patients with prolactinomas, bromocriptine not only lowers their prolactin level but it also shrinks the tumor, thus making risky tumor-removal surgery unnecessary. For some patients, though, their prolactin level lowers but the tumor doesn't shrink. Mounting as aggressive a pharmacological attack as possible, Braunstein has had me taking eight bromocriptine pills a day, plus a new anti-prolactin drug called cabergoline, waging a two-pronged attack on the tumor. It's a last-ditch effort to avoid my having to undergo brain surgery.
But eight months into my drug therapy, another MRI shows that my tumor is just as big and perilously close to my optic nerves, my carotid artery, my infection-prone sinuses and my brain's speech and
language center as it was before the bromocriptine, of which I am ingesting eight pills a day, nearly the maximum dosage considered nontoxic.
Though sexually liberating, the pills make my tongue dry as cotton, speed up my metabolism so much that I can sleep only six hours a night and give me constant nausea. And my headaches, which are being caused by the tumor pressing against the surrounding cranial nerves, have not gone away at all. My penis may be able to get hard, and my once dichotomous
Ken-and-“Ken”
identity may be morphing into a more confident, self-assured, integrated Ken, but the chemicals are taking a toll on my body. I have lost ten pounds on a five-foot-eleven-inch frame that didn't have much weight to lose to begin with. Ever since college I have had circles under my eyes because, I assumed, I didn't get enough sleep. I didn't realize that the reason was that I had a tumor forcing my body to fight against itself, which meant no matter how much sleep I got, my body was exhausted from the battle. Now that I am swallowing so many pills every day, the circles are even darker and ring my eyes like Halloween eye paint. I can't live long like this. What at first seemed like the solution is now creating its own set of health problems. It turns out that getting diagnosed was only the first half in my marathon of recovery.
“Surgery is always the last option,” Dr. Braunstein tells me during one of my biweekly visits, “but it's looking as if drugs aren't going to get rid of the mass. It's time to plan for surgery.”
Braunstein sends me over to the hospital's Skull Base Institute to consult with its top surgeon, Hrayr Shahinian, a no-nonsense kind of doctor who immediately clips my MRI film onto an illuminated plastic board and shows me just how dangerous it is for me to keep living with this tumorous chestnut a few inches behind my eyes. If the tumor expands a few millimeters one way, he points out, I could go blind. Should the tumor extend a few more millimeters to the right, I could have a stroke and die.
“You have a grenade inside your head,” he says. “You can't afford to wait any longer. Surgery is the
only
option.”
“But couldn't I die from having the operation?” I ask.
“I'm not going to lie to you: yes. But for a young guy like you there's a less than one-percent chance of that happening.”
Shahinian, his black hair clipped as short as his speaking style, then concedes all of the “potential” risks. A smidgen of a slip to the right? A stroke. An errant microscopic slice to the left? Eye paralysis, brain damage or worse. Shahinian is confident that none of these things will happen.
I appreciate his candor, and I trust him, but, still, I can read between the lines: This surgery could make me brain-damaged. If successful, though, the procedure will free my body, and, he explains, my testosterone and other hormones will pump to perfection without the need for nauseating medication. As for my sexual function, he adds, “It should be better than it is on the drugs.”
Ever the journalist, while scribbling notes onto a pad, I glance at Shahinian's hands. They look solid, manly. His fingernails are perfectly manicured.
“I don't mean to sound arrogant,” he says, “but I have never lost anyone on the table. But if you don't get this operation, the tumor could eventually kill you.”
Luckily, Robin is on summer break from school. She has moved in with me, in case I need help following my surgery, not to mention to see if we can get along while living together. Her visit, we have decided, will be a test to see whether we will take our relationship to the next levelâthat is, whether one of us will move permanently to be with the other.
We start failing the test. I soon find that some of the qualities I admired in her from afarâher tireless dedication to her work, her shyness, her almost childlike sensitivityâare not so attractive when I see her every day. I start thinking not only that we are too different
but that we are in two different stages in life. She has dated numerous men and, after playing the field, now wants to settle down; I have spent my entire adult life in a sexual stupor. Although I am wracked with guilt, I can't stop myself from craving someone who laughs more, who is more goofy, who, well, isn't as intense as she is.
As clichéd as it sounds, though, it really isn't about her. It's me. I have changed. But while Robin likes the new Ken even more than the old Ken, the new Ken feels a need to confront these doubts of his by seeing what else is out there. This is a conclusion I would rather not have to make. I wish I could overcome this health problem and find a way for us to live happily ever after in the same city together. I have never been strong enough to even think of breaking up with a woman, especially someone as attractive, kind and perceptive as Robin. Her urging is what saved me from becoming a victim of my own denial. I waited so long, suffered through so much self-doubt and loneliness, to find a woman who would accept me for who I am; she not only did, but she made me stronger with her love. With her I learned that there is hope that I could someday have that wife and a home and kids and a dog and all the romantic dreams I have had for as long as I can remember.
As much as I wish I could silence these competing voices inside my head, I owe it to myself and to Robin to acknowledge my conflict.
It finally becomes clear to both of us that I don't think Robin is “the one” when we're walking along the beach in Santa Monica the day before my surgery. It's a scary time. Neither of us knows what is going to happen to me when the surgery is over, whether it will make me whole or make me worse.
“Do you think we'll get engaged after the surgery?” she asks me.
“I don't know, Robin,” I say, stopping to hug her. “Let's just take things one day at a time.”
“I know, I know,” she says, the corners of her lips curling downward in disappointment. “But it would just make me feel a lot better if I had that to hold on to when you are in surgery tomorrow. That's all.”
I easily could just tell her yesâand not tell her the truth, just like I had lied to myself for so many years. I could keep going out with her and having sex, using her body while constantly eyeing other women like those lecherous old men and wondering if I am just settling for something that isn't right for me. I could be “a player” and cheat on her while telling her everything is fine, then one day dump her like I have seen two-timing guys do so many times before that it has became a male cliché. But I don't want to become a prisoner of my strong sex drive just as easily as I was imprisoned by my lack of one. Even though I feel these sexual urges, desires that can make an American president seem like little more than a two-timing sex addict, I want more.
I don't just want sex; I want to fall in love. Ever since I dreamt of building a family with Jenny away from Buffalo, I have always longed for a woman with whom I could share a marriage. I have witnessed the disintegration of my parents' marriage, heard the horror stories of my grandparents' failed marriages, seen men tell lies that ultimately ruin relationships, and now I want to succeed where so many men have failed. And I am willing to be alone until that time comes.
I have just spent my entire adult life lying to myself and others. Now it's time to be a man.
“I love you, Robin,” I say, “but if I told you right now that I believe you and I will be together forever, I would be lying. I appreciate you so muchâyou're so sweet and caring. I am a lucky man. But right now I'm just enjoying this moment with you and I thank God you're here with me. I love you.”
And I mean it.
The next day, a surgical-masked nurse wheels my body into a chilly operating room on the eighth floor of Cedars Sinai Medical Center. Before the anesthesiologist injects me with a sedative that in seconds will knock me out, I take a deep breath and say a prayer.
God, I go with You.
And I close my eyes, prepared to cope with any complications when I wake up, ready to cope with whatever outcome.
Shahinian usually enters through the nostrils in his “transphenoidal”â
through the sphenoid sinusesâapproach to the brain. But my nose is narrow, “not like my Armenian nose,” he explains. As a result, Shahinian uses my upper gum as a portal to my brain, making an incision just above my teeth, forcing open an accessway. He then widens the incision with a metal instrument resembling a vise. He bores through several layers of skull tissue and bone like a surgical subway tunneler, finally reaching the tumor, a throbbing blob of white tissue. Despite all the high-tech medical procedures doctors can employ these days, the procedure is manual and primitive. Shahinian carefully scrapes the mass off my pea-size pituitary gland with a blunt metal tool roughly the width and length of a pencil.
Five hours later, he concludes the operation, sealing the circular hole he created in my skull bone with a cut-to-fit slice of yellow fat he has taken from my lower abdomen. If the fat plug doesn't successfully seal the hole, I could leak brain fluid and die from the ensuing infection.
The steady, high-pitched beep of a heart monitor tells me I am alive. The complex of intravenous tubes and temperature-, pulse- and oxygen-monitoring wires tells me that I am lucky to be so.
A plastic catheter is carrying urine from my bladder into a tube that empties into a bedpan on the floor. The gauze in my nose makes nasal breathing impossible, so I inhale through my mouth, despite the discomfort of swallowing the constant drip of blood leaking from my skull-base wounds.
I can't sleep. Every time I nod off, the dripping blood chokes me awake. Every minute or so, I must gasp for air.
As I once did while playing goalie in front of thousands of taunting, screaming college hockey fans, I focus on the task at hand. Yogic breathing; easy in, easy out.
The clock above the nurses' station says it's six o'clock. It must be morning. Robin walks in and pets my matted, blood-stained hair. I open my mouth and she places tiny ice chips into my parched mouth; unable to chew, I let them melt on my tongue.
I'm too concerned with breathing to talk; the oxygen mask will muffle my voice anyway. I strain my eyes over to Robin, who is lightly stroking my hand. Our eyes lock and, realizing the trauma I have just endured, I begin sobbing uncontrollably.
I start choking. Robin runs to get a nurse, who rushes into my room to settle me down.
“Just relax,” the nurse says, eyeing my vital life monitors. “You're going to be okay. Just relax.”
She drops a couple of ice chips into my mouth.
“Are you scared?” the nurse asks.
I nod.
Later that morning, I'm feeling less groggy, my thoughts are clearer. It will be a long two days before I can stand up; another two days before I can walk without assistance. Lying in bed, staring up at the white ceiling tiles, I wonder if what I have just endured will be all worth it. Will I reap the reward that surgical removal of my prolactin-secreting tumor promised: unimpaired manhood?
The orange Southern California sun is just starting to fill my room as Dr. Shahinian, my surgeon, steps in with my charts in his hand. He's beaming as he lifts the oxygen mask off my face.
“Everything went well,” he says. “I got the tumor.”
“You're a fucking stud,” I mumble.
“No,” he says. “You are.”
About three months after my surgery, I began feeling a little sluggish. I had a harder time waking up in the morning and sensed that I had lost that energized feeling that had catapulted me into a state of euphoria after surviving a brain surgery that had promised a drug-free and normal hormone level for the rest of my life. Also, my hunger for sexâravenous immediately following surgeryâhad declined and my erections weren't as hard.
It proved to be the first test of my new manhood. Instead of ignoring the symptoms as I had before, I immediately went to see Dr. Braunstein, who administered a blood test. It showed that my prolactin level had jumped up to 80 ng/mlâeight times the normal level. An MRI the next day confirmed his suspicion: a crumb-sized fleck of tumor, secreting prolactin, remained lodged in my right cavernous sinus.
Here we go again.
Just when I figured I could get on with the rest of my life, I find out that Dr. Shahinian, despite his valiant effort, was unable to extract the entire mass. It remains lodged dangerously close to my carotid artery. For Shahinian to have poked around this bloody crevice just inside my temple would have been too risky. There's a sound biological, if also disturbing, reason why people commit suicide by shooting themselves in the temple: If he had gone for that last bit
of tumor and severed my carotid artery, I could have hemorrhaged and died.
So now I must take two pills a weekâperhaps for the rest of my lifeâin order to keep my prolactin level at a normal level of about 10 ng/ml, and to keep the tumor from growing any larger, thus requiring me to have the same surgical procedure again. So delicate is my drug-enabled balance of hormones that if I fail to take just one pill in a week, I have a lower energy level and less of a sex drive.
Yet, rather than viewing the stubborn tumor as a burden, I believe it is a giftâa daily reminder not only of the fragility of life but of the fragility of healthy hormonal maleness. Because of what I have been through, I am infused with an incredible lightness of being. I will never take my health for granted, nor will I squander it by acting like anything less than a man who respects its power.
Which is what I now try to do every day. But it is not without the emotional intensity that my health allows.
Several weeks after my surgery, Robin and I still had neither committed to each other nor broken up. What we did know was that our long-distance romance was no longer feeling romantic or like much of a relationship. I agreed to see a couples counselor with her. I flew up from LA on a Friday afternoon and drove straight to the therapist's office in Oakland. The therapist was a graduate student working on her Ph.D. who had been counseling Robin one-on-one for the last several weeks. It was the therapist's idea to invite me to their sessions.
Robin and I uneasily sat next to each other on a couch across from the woman, who first asked Robin to voice her frustrations and concerns, a list that was longer than the printout of my phone bill for the past few months, a measure of how Robin and I had been desperately trying to make things work.
Robin told the therapist that she believed we had a generally healthy relationship that would thrive once we lived in the same city. Robin explained to the therapist how committed she is to me, accurately telling how she stuck with me before and after my surgery, how
she took care of me when I was recovering and how I am now repaying her by doubting our compatibility.
Tears welled up in my eyes as she spoke. Because she was right, and because she was wrong. Yes, she had been there for me when I needed her most, but the truth is that I now wanted to break up with her more out of my own need for self-discovery after my tumor was treated than due to her not being a good and loving human being.
Robin, herself amidst a stressful graduate-degree program, added that I was being insensitive and inconsiderate by “dumping all of this” onto her during such a busy time of her life.
Finding her cue, the therapist fixed her gaze on me. “You have to admit that you don't have very good timing,” she said.
“Timing?” I angrily snapped back. “You're trying to say that
I
don't have good timing?”
The old, passive Ken, the one who always avoided conflict, might have reacted to her comment with solemn sympathy, perhaps even apologizing for his behavior. But I was the new, testosterone-charged Ken. I had just endured a biochemical revolution and survived a surgical trauma. I leaned forward and shot needles into the therapist with my eyes.
“Timing, huh? It wasn't good
timing
when I found out I had a tumor that was strangling my masculinity. It wasn't good
timing
when a surgery that was supposed to make my life better has only made it more complicated. And it's not good
timing
right now, when someoneâwho has no fucking idea what I just went throughâis blaming me for dealing honestly and up-front with a health crisis that, frankly, hasn't exactly been a piece of cake. Do you have any idea what it's like to undergo a complete hormonal transformation overnight? Well, do you?”
“No,” the therapist replied. “I don't.”
“Well, then the next time you go and suggest that this situation was somehow bad
timing
, just stop and think about the hell I just went through.”
Robin promptly paid and we left.
I wasn't used to lashing out like that. Prolactin had always kept my temper cool. I was embarrassed by my outburst; yet, I didn't regret it.
At least I have passion.
For the first ten minutes of our ride back to her San Francisco apartment, neither Robin nor I uttered a word. I think we both knew we were being pulled apart by a masculinizing force perhaps as strong as the one that had emasculated me for all of my adult life. Nature was in its own cruel way separating us.
Halfway across the Bay Bridge, Robin broke the deafening silence.
“It's just not fair,” she said, staring out her window at the choppy waters. “Just when you've become a healthy man, I can't enjoy you.”
â
The ancient Greeks had a saying: “The suffered is the learned.” Here is what I have learned: Both nature and nurture make the man. Manhood is about an inner, intangible essence. Maleness is about biology; manhood transcends biology. A drug or the removal of a tumor can make someone more male, but it makes him more of a man only like breast implants make someone more of a woman.
For better or worse, manhoodâthe approved way of being a male in our societyâis something that a male is expected to prove. Yet, he is given no guide, no handbook offering a checklist of accomplishments. Instead he culls his understanding of what's expected from the personified icons of manhoodâfathers, brothers, friends, teachers, rock stars, underwear models, religious figures, politicians, TV personalities, comedians, athletes, movie starsâthat form his collective male unconscious. He endures a series of ritualsâamong them losing his virginity, exhibiting physical, mental and sexual potency, working hard, amassing resourcesâin an effort to achieve his culture's idealized state of manhood. It took me years of suffering through a male inferiority complex before I realized that the resilience and courage I employed in order to survive my ordeal had made me more of a man than, given my hormonal handicap, I ever thought possible.
My recovery made me feel blessed to enjoy sexual health and the ability to share love with a woman. But rather than using my strength by only looking outward for satisfaction, I first turned inward and got acquainted with my new self. I realized that I don't have to be alive; I am here by the grace of a force stronger than any hormone. I returned to the spiritual texts that I had abandoned in frustration. The Buddha's writings now made sense:
Though he should conquer a thousand men in the battlefield a thousand times, yet, he indeed who would conquer himself is the noblest victor.
Not long after my breakup with Robin, I began dating someone who shared as much passion and joyful appreciation for life as I now didâonly she didn't need to have a brain tumor short-circuiting her endocrine system to be that way.
Her name is Brooke. An athletic California girl with a wit as quick as her foot speed, Brooke worked one floor below me in the advertising department of my former employer, Time Inc., for a year without our ever meeting. But we eventually did meet, as yuppies often do, in the photocopying room. With Brooke, my male health became cause for celebration, not conflict. I no longer was hurting anyoneâmyself includedâby merely being myself. With Brooke, I didn't need to explain who I was and what I was thinking; Brooke already seemed to know. Indeed, I had forged a bond as magical as the miracle of my renewed life.
Two years later, on a brilliant Saturday afternoon in the romantic wine country of Sonoma, California, I stood in a silver-vested black tuxedo before the people in the world who mattered to me most and pledged my lifelong devotion to Brooke. My mother, her hair perfectly coiffed, stood beside her husband, Norm, still a good man after all these years. I looked out and saw my old Colgate friends, who had stuck with me even when I was hiding my real self from them. My three older brothers, all of whom have children and jobs, strapped paychecks and bills to pay, couldn't afford to make the trip to California. But to my left stood my little brother, Kris, my best man; as a
twenty-four-year-old college student and record-store manager, Kris had spent the five years since our father's death searching for purpose in his life. Now that I had found mine, I vowed to help my not-so-little brother find his. I wish Dad could have seen that, as he had requested in his last days, my mother and I have taken care of Kris. If Dad had been there, I know he would have been proud of us, his two youngest boys looking so dapper and strong: survivors.
I also wish my fatherâfrom whom I learned so many lessons, both good and badâcould have seen the man I have become. Finding that my postsurgical sinuses had grown more sensitive to the smog, I had left LA for the cleaner air just north of San Francisco, in the shadow of Mount Tamalpais. I had stopped trying to escape my personal pain by packing up and moving before I could get close to anyoneâfrom Buffalo, to Washington, DC, to New York, to Virginia, to Los Angeles. I soon began telling people, without shame, what I had learned through my ordeal, and eventually I started putting those thoughts onto paper, the result of which fills the pages of this book.
I have also learned how to celebrate my body. My arms and legs are sturdy from training for a marathon to raise money for pituitary tumor patients. My calves, chest, torso and shoulders are firm from riding my mountain bike and playing hockey. When I let in a goal, I don't hate myself; rather, I love myself and am grateful for having the great fortune to play. My body feels whole. My mind, no longer a prisoner of a tumor, is teeming with creative energy and wonderment. My spirit is emboldened.
I am a manâmade of the experience of my life.