For nearly two years, I've been obsessed with medical journals. Volumes of fascinating, disgusting material that could only be described as NSFAnyoneInHerRightMind. But I read them all, equal parts wide-eyed and nauseated. No, I'm not a doctor. I just write about them for TV.
The writing staff of Grey's Anatomy is fortunate to have countless resources to satiate our curiosity and our desire to accurately portray surgeons at the top of their game: access to top medical professionals, writers with past lives as doctors, and a researcher who's a walking medical dictionary (and someone I'm convinced could perform an appendectomy if asked nicely). But as someone who was diagnosed with a rare bone cancer in my thirties, I'm in constant pursuit of stories that start the same way mine did: This rarely ever happens, but… The more unexpected the source, the better: distant relatives at Thanksgiving; flight attendants; the heart surgeon I meet while downing Mai Tais on my Hawaiian hiatus from writing on Grey's.
On one of my more traditional research excursions, I attend a university lecture featuring top Sports Medicine doctors in Los Angeles. Since my diagnosis, I've gleaned more firsthand knowledge of orthopedic surgeries than I ever hoped to, but I go anyway, expecting 85% boredom, 15% awesome. What I don't expect is to see him.
He is perfectly coiffed with salt-and-pepper hair, a perfectly sloped nose, and perfectly smug grin. He recognizes me immediately, and waves as he finds his seat onstage. You look great, he mouths. You must be well. I smile in tacit agreement as I instinctively zip up my hoodie so he can't see the bandages covering my port-a-catheter.
Dr. Perfect, my former doctor, has no clue about the tumor in my spine, the years I spent chasing dead ends and clinical trials across the country—and I have no intention of telling him. Instead I sit, stock still, while he regales the audience with stories of rebuilding cartilage and Olympic dreams from scratch. The longer he speaks, the more I fight the urge to lunge across the room and pummel his perfect face. But I don't lunge. I don't pummel. I smile. I nod. I behave.
Behaving is what I was taught to do—as a child, a student, a woman. Sure, I was a pain in the ass at home, where my parents made it safe to test boundaries. But it was a point of pride to me that I was considered "raised well." I placed a high premium on pleases and thank yous (and thank-you notes). I kept every promise and commitment I made. Teachers were rulers and doctors were gods—whatever they said, I didn't just listen, I wholeheartedly believed.
So several years ago (pre-cancer diagnosis), when Dr. Perfect sat me down after four failed surgeries to repair the knee I damaged in a hiking accident and said: "I don't know what to do with you anymore," I didn't see his limitations, only mine. I found nothing wrong with his favorite question: "What is your chief complaint?" I felt mollified when he half-joked: "Neurotic Jewish Women are my specialty." I didn't question him when he prescribed anti-depressants—rather than another MRI—after I confided I was sleep deprived from constant knifing back pain. I convinced myself that his inability to fix me was my failure, not his. I wasn't tough enough. I weighed too much, exercised too little. It was my fault I couldn't walk to the grocery store without a cane and a fistful of Vicodin. He called me "impatient" and "emotional." It never occurred to me that being "female" was perhaps the most dangerous label of all.
Soon after Dr. Perfect "released" me as his patient, I found another surgeon. He saw the 17% cartilage remaining in my knee and declared that a knee replacement was the only solution. Halfway through the procedure, he discovered a mass on my tibia. They biopsied it twice because he couldn't believe what he was seeing: chondrosarcoma—a form of bone cancer almost unheard of in anyone my age (the average age of diagnosis is 51). The knee replacement surgery itself was successful, but my cancer prognosis was poor. An additional tumor encroached on my lower spine. Chemotherapy rarely shrinks chondrosarcoma, but it was my best option. The next three years, off and on, were an onslaught of PET scans, surgeries, and harrowing clinical trials. Additional tumors took up shop in my lung and liver. My kidneys took a major hit. My pride and relationships did, too.
At the time of my initial diagnosis, I didn't bother asking how or why it took so long to discover the cancer. I had neither the energy nor the desire to play the "What If" game—I was too busy juggling full-time work and bi-weekly chemo. Now, years later, my lung and liver are cancer-free; but my spine is home to a small cluster of cancer cells that doctors continue to watch like hawks. I'm moving forward with my life.
Yet there I was at that lecture, sitting square in front of Mr. Perfect, wondering: what had I missed? The moment it ended, I slipped out and dived into a pile of research, determined to disprove my suspicions that I was a victim of gender bias, and instead just a freak medical case I'd be happy to hear about at a dinner party. The first article I read was a case against Kaiser Permanente where Anna Rahm was awarded $28 million dollars. She'd complained of severe back pain, and instead of an MRI, her doctors sent the five-foot-four, 125-pound 17-year-old to a nutritionist to lose her "belly weight." Her tumor went undetected for months, and Anna's right leg, half her pelvis, and part of her spine were amputated.
Next in the pile: Maya Dusenbery's article asking "Is Medicine's Gender Bias Killing Young Women?" I found her answers chilling. She cites a Yale School of Public Health report that reveals how women delay or downplay their need for treatment—often for fear of being labeled a hypochondriac —despite the fact that women under 50 are approximately twice as likely to die of heart attacks than men.
Dusenbery also illuminates that 75% of autoimmune disease patients are female, and it takes an average of "five years and five doctors" to diagnose them—half of whom report being labeled "chronic complainers." Both "The Girl Who Cried Pain"by Diane E. Hoffmann and Anita J. Tarzian and Karen Calderon's "The Influence of Gender on the Frequency of Pain and Sedative Medication Administered to Postoperative Patients" uncover that "Women are more likely to be given sedatives for their pain and men to be given pain medication." Lena Dunham and Jenni Konner's Lennydevoted an entire recent issue to endometriosis—nearly every piece echoing the same journey: years of debilitating pain, delayed diagnosis, and what Padma Lakshmi describes as a "mangled" relationship with her body.
As I moved through each study, I flashed back to being doubled over in agony in the ER during graduate school. A doctor and two nurses told me: "We'll help you when you stop screaming." I bit my tongue until it bled to stifle the pain, and they reluctantly agreed to a CT. Only when they had irrefutable evidence that my pain was real—I was passing three kidney stones—did they give me pain medication.
Nearly every article, study, or first-person account revealed similarly alarming patterns: Women are sedated (i.e. silenced), diminished, or discounted, while men's symptoms are trusted, validated, and treated. Yet women continue to do the apologizing. We too often shrink under the weight and shame of appearing difficult. We use the word "just" to temper our complaints or accolades. We soften and qualify and endure. We behave.
I stared at the pile of overwhelming research and felt the same urge to lunge and pummel. I unearthed the worn accordion file of my medical history and found Dr. Perfect's business card. I made an appointment.
A week later, I'm sitting in his perfectly sterile patient room, every file and scan laid out in front of me. I catch my profile in the mirror. My eyelashes are growing back in. I need a haircut for the first time in a year. On the outside, I look as if nothing's changed. And for all Dr. Perfect knows, nothing has. When he arrives, he's perfectly polite. He asks to see my knee scar to note how it has healed. I pull up my pant leg and he stares, befuddled. It's now a six-inch zipper scar across my kneecap. I ask: "Would you like to see the rest? The gash where my port was put in twice? The base of my spine? The space where an eighth of my tibia used to be?"
He sits back in his chair and takes a deep breath. I point to the scans, reminding him how my story started, then I tell him how it ends. For one brief moment, his eyes betray him; he's stunned silent. Then, a switch flips. He spouts vague legal terminology at me until I sign on dotted lines, agreeing that I won't sue him—that I'm just there to talk. I spend the next hour shooting questions at him, rapid-fire: "Knowing what we know now, is there any evidence of chondrosarcoma in my previous scans?" "How else might my cancer have revealed itself: Blood work? Bone density tests? Further investigation of my family's cancer history?"
I have every intention of asking him why, out of all the people he saved, he failed to save me. But that answer is finally clear: You can't save someone you insist doesn't need saving.
We sit in painful, protracted silence as I stare at his perfectly tanned, inscrutable face. I'm hoping he'll say something, anything to make me feel better. He cocks his head to the side: "You seem angry..."
I leave feeling empty. I expected fireworks and an epic speech in which I righted every wrong and brought him down to size, swooping out in a superhero cape and a flurry of self-righteousness. But there were no fireworks. No capes. And no answers. Only more questions. I walk aimlessly around the neighborhood for an hour when I spot a group of mourners outside an old stone church. I know nothing about Episcopalians and they know nothing about me. But I slip inside anyway, unnoticed, and sit in the back pew. A choir sings an out-of-tune hymn I don't know, for a woman I'll never meet, and I dissolve into silent, relentless tears.
Weeks later I'm in a conference room, surrounded by my mighty team of oncologists—all male, none of whom appear to have seen daylight in months. They propose a game plan for the upcoming year: scans every three months; weekly lab work; and daily medications. We debate, at length, the risks versus benefits of such frequent scans, but we're all advocating for the same thing: me. They end our meeting with their favorite question: "Did anything unusual happen this week?" I consider telling them about Dr. Perfect, but I don't waste their time. They have all the answers they need.
I do, too. I have no proof that Dr. Perfect missed something, nor do I have the desire to point fingers or make him feel as small as he made me feel. Besides, what possible reward could I get for being right? Whether his failure to diagnose me was malpractice or not, he effectively silenced me. For years. I no longer want to lunge and pummel anymore—I want my voice back.
Dr. Perfect doesn't bill me for our two-hour appointment. I buy an absurdly expensive thank-you card (old habits die hard) and I stare at the blank page inside. Two weeks and two whiskey shots later I finally write: "Dear Dr. Perfect: Thank you for your time. I'm not angry. I'm
just done behaving."
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