The low number of men affected slows research, since studies only move forward when new patients provide new data, but we’ve learned that men and women differ dramatically in their response to anti-estrogen therapies. Understanding that difference may help us map the molecular minefield and improve hormone therapy for women with breast cancer.
On the surface of some breast cells—both normal and abnormal—are hormone receptors that attract estrogen and/or progesterone. When the hormones talk, those cells listen. And the hormones are saying, Grow. If you’re a fourteen-year-old girl trying to fill out a cashmere sweater, that’s great. If you’re a woman—or a man—with breast cancer, it can be lethal. We’ve learned that we can slow or even stop the growth of breast cancer with drugs that inhibit the reception of estrogen, progesterone, and a protein known as human epidermal growth factor receptor (HER2). In triple negative breast cancer, none of the three receptors is present, so the cancer doesn’t respond to hormone therapies like tamoxifen. (HER2 responds to drugs like Herceptin.)
Additionally, we felt certain we could impact the higher mortality rate for men simply by raising awareness, because it’s partly the macho factor that works against men with breast cancer. Dr. William Wood, chairman of the Ethics Committee and professor in the Surgical Oncology Division at Emory University, a regular at a major annual breast cancer symposium in San Antonio, spoke at one of our press junkets. “Women see a doctor if they feel something the size of an M&M in their chest,” he said. “Most men won’t even think about it until the lump is the size of a golf ball, which means the cancer has advanced and probably spread.”
It was incredibly courageous of Richard Roundtree to come forward. As he underwent mastectomy, chemo, and radiation back in the 1990s, he was forced to keep his diagnosis carefully hidden. Along with his life—and his bigger-than-life image—his livelihood was at stake. To work in a major film or television production, actors have to be insured. Had the truth been known, his career would have been destroyed. It’s ironic and a bit heartbreaking that for all the strides we’d made toward breaking the silence, all our efforts to eradicate the term women’s cancer from the lexicon, for far too long, men with breast cancer were left behind.
Over the following decade, men’s mortality rates dropped a whopping 25 percent. Dr. Wood says men’s breast cancer is being detected earlier and treated more effectively.
Apparently, the guys just needed a little pinking. Fortunately, we had Shaft on our side.
Ten years after he joined our awareness effort, Richard Roundtree is still speaking out about breast cancer and appearing, appropriately enough, on the show Heroes.
As for Thao Barnes, Thursday, January 14, 2010, she updated her Facebook status:
“All breast cancer tests and MRIs for this six-month period were clear! May 16 will be two years in remission. Life is AWESOME. Going for a five-mile run to celebrate.”
The Coast Guard was already on the ground in Haiti with additional troops being mobilized. Friday, Thao’s unit was deployed.
“Hey, friends,” she posted. “Won’t be back for a while. Going out to save the world.”
∼ 8 ∼
Make It Last
I lay in bed at night, passing my hands over my breasts, intensely aware of every anomaly. Has this bump grown slightly since last week? Is this one a little firmer than the others? I alternately chided myself for being a coward and castigated myself for falling into that false sense of security Suzy and I had embraced over the years.
“Don’t worry. It’s nothing.”
We’d heard it a thousand times. But nothing isn’t palpable. Nothing cannot be measured between the thumb and index finger. You can’t needle biopsy nothing. A cyst is not nothing. A benign tumor is not nothing. You get credit for a something there, even if it’s something other than a malignancy.
Long before Suzy was diagnosed, I was well aware—and well informed—on the “dense breast” thing. I’d done my homework on it and told her with library-book certainty, “Statistically, the vast majority of breast lumps are benign. It really would be silly to rush off and get a biopsy every five minutes.”
And I was right. That absolutely correct information was no less correct just because Suzy had cancer, but statistics and certitude rang quite differently in the blizzard-white world of M. D. Anderson. We struggled to find a balance between the “normal” world and the cancer ward, where baldness and IV drips were the norm. Infusions of toxic chemicals were standard; breakfast, lunch, and dinner were remarkable events that warranted a detailed report on Suzy’s thick medical chart.
What was I to make of my normally abnormal breasts now, as I lay alone in bed with my persistent nothings?
Balance. That was the goal I was trying to achieve, and it was tough. Time away from my growing son versus time away from my dying sister. The need to financially support myself versus the need to emotionally support my family. The fear of knowing something terrible versus the fear of not knowing something terrible.
Later, at Suzy’s funeral, the rabbi read W. H. Auden’s poem “If I Could Tell You.”
The winds must come from somewhere when they blow, …
Time will say nothing but I told you so.
After Suzy’s diagnosis, my own physician eyed me with a different level of suspicion. Certain words creep onto your medical chart and color it like a coffee stain. Cavalier “cop-a-feel-and-tell-me-it’s-nothing” exams were a thing of the past. He lingered over the lumps, wanting to err on the side of caution, now that erring one way or the other seemed unavoidable. Three times during the course of Suzy’s treatment, I choked down my fear and went in for biopsy surgery.
“Mommy …” I hated to burden her with it, given everything she was going through, but I needed her to know. “This one’s not budging. They want to take a look at it.”
“I’m on my way.”
There was nothing in her voice but my grandmother Fritzi’s last mandate: Don’t let the world fall apart on you. For one of the procedures, Mom had to leave Suzy’s bedside in Houston to meet me at the hospital in Dallas. Groggy from anesthesia, I opened my eyes to find her there, and guilty relief flooded over me.
“Eric—he’s okay?” My first waking thought since the day he was born.
“He’s fine,” Mom assured me.
So was I. The tumor was benign.
“Thank God,” I breathed. “Mommy, I’m so sorry to put you through this again.”
“Shhh.” She stroked my forehead. “Let’s just take the good news today.”
I floated on the feeling of being five years old again, grateful, drifting back to sleep to the sound of her voice.
We all did the best we could, but really, Mom was the one who kept everyone going through all of this. She was, without exception, gracious and polite in every encounter, charming her way around triage nurses, caseworkers, and radiology lab techs. But she also kept the trains running on time when it came to Suzy’s care. She had the backstage lowdown on every hospital, clinic, and chemo infusion facility. She orchestrated logistics and travel and helped Suzy manage the endless childcare challenges and wrenching separation from her little ones. She oversaw the grand timetable to make sure Suzy had help, transportation, and companionship whenever she needed it. We continued taking turns traveling with her to treatments and surgeries, but there was one terrible stretch where Mommy stayed with Suzy for five and a half weeks in Houston and never saw the outside of the hospital.
Daddy had a hard time coping with the reality of what was happening to Suzy. Men of his generation were trained to batten down the emotional hatches, take hold of the ole bootstraps, and fix whatever needed mending. But this was beyond his control—both the situation and the depth of feeling roiling inside him—and he struggled as Suzy’s decline became more and more obvious. Suzy continued to preface her intentions with “when I get better,” but the rest of us gradually realized that this really meant “when I die.” It was unspoken for the most part. Suzy didn�
��t want to discuss any details, but one day after I brought her home from treatment, I stepped into the kitchen to make her a cup of tea, and I overheard her tell Dad with a small, choked sob, “Don’t let them bury me in the ground, Daddy.”
I heard him murmur in response, his voice low and comforting. She was always and forever his beautiful little girl. How, I wondered, would he ever recover from this?
Mommy suggested that the four of us—my parents and Stan and I—should visit with the rabbi at Stan and Suzy’s temple for advice on how we could best help Suzy now. Rabbi Goff had known her for a long time, knew what sort of woman she was and why she didn’t want to talk about what was happening to her.
“Stay hopeful. Keep encouraging her,” he said, “but don’t pretend she’s not dying. Don’t lie to her or put her in a position where she feels obligated to lie to you. There are limits to optimism and stiff upper lips. The suffering of a kind, loving, beautiful young woman—it offends our sense of justice. We feel angry at life’s unfairness, angry at our own helplessness. But the way we respond to life and death as it flows, as it comes to us—that’s the real test of our character and our humanity. I have the highest respect and admiration for the way your family has responded to the stress of this catastrophe. Suzy is a lucky woman in many ways. A lot of people live a long time and never know the quality of human relationships she has with her family and friends.”
Lucky.
It wasn’t the word I would have chosen at the time.
As her energy waned and her little body began to waste away, the good days became fewer, the long nights darker. Mom and I frantically researched whatever treatment or drug or twist of fate was on the table, trying to decipher acronyms, begging for clinical trial bulletins, desperately trying to connect some frame of reference to Suzy’s blood count and vital signs.
“Don’t get so excited,” Suzy would say. “Calm down, Nan, and help me figure this out.”
Initially, we’d await test results with an even mix of hope and apprehension. Now we rolled with the punches. Bad test results were just information, not a body slam; good test results were rare and regarded with cautious optimism. Suzy’s buoyant outlook turned contemplative and somber.
For fifteen months, Blumenschein and the team at M. D. Anderson had managed to pump the brakes, never stopping the disease but definitely slowing its progress. Now Suzy’s cancer was learning its way around the drugs. Her body acclimated to the onslaught and built up resistance. Dark shadows rose up under her skin. Lesions opened and oozed on her chest. One surgery after another was performed to close and cover them. Another procedure was done to remove the implant from her previous reconstruction, and muscle tissue from her back was used to replace the chest wall. Despite all the desperate measures of the previous two years—mastectomy, oophorectomy, more radiation, new drugs—the cancer caught hold and spread like a wildfire inside her.
We began a downward spiral toward the inevitable.
Trips to Houston were hard on Suzy, but she kept going. Mommy and I whispered back and forth on the phone, fretting over how to help Suzy as she became more and more weak and malnourished from vomiting. Having tried everything else, Mom went out—God knows where or how—and procured some marijuana. With her heart in her throat, Mommy taped the plastic bags to her legs before she boarded the airplane to meet us at M. D. Anderson. Unfortunately, by this time, Suzy was so ill, she couldn’t eat the pot in cookies or brownies, and her lungs were so beleaguered, trying to smoke it made her cough, which made the horrendous nausea even worse.
Week after week, she sat shivering in the cold, drab waiting room until they called her name. Then she shuffled through the double doors and lay shivering in her hospital gown on a gurney in the hall, slipping in and out of fitful sleep.
I understand now why Suzy hated hospital gowns. At the time, I guess I thought, Why wouldn’t she hate them? She was an impeccably stylish woman who cared a lot about how she looked. That’s who she was. But in retrospect, I think there was more to it than that. The one-size-fits-all boxiness of the thing is dehumanizing. That pragmatic but potentially breezy opening in the back goes to the very etymology of the word embarrassing, and the very idea that one size does or can or should even attempt to fit all was offensive to Suzy, literally and metaphorically. This wasn’t a matter of style or aesthetics—it was part of a larger dynamic that makes so many cancer patients feel dehumanized and stripped of their dignity.
Emerging from an uncomfortable doze on a gurney in the hospital hallway one day, Suzy discovered that her clavicle port had been bleeding and that her gown was stained with a dark blossom of dry brown blood.
“Excuse me? Nurse?” She kept trying to flag someone down. “Could I get a clean gown, please?”
I’d gone to take care of some paperwork while she was sleeping. By the time I got back, Suzy was beside herself, struggling to bite back her anger and swallow her weeping. I chased down a nurse who promised to bring the clean gown, but the facility was always overburdened with patients. The staff were stretched to the limits of what they could do, and the matter of Suzy’s lifelong pride in her appearance—the fact that to feel in control of anything at all, she at least had to be in control of that—none of this could be taken into consideration when there were a hundred other patients on the ward, some of whom were even closer to death than Suzy was. And Suzy understood all that, but understanding that all the small things you care about have been lost in the grinding machinery that keeps you alive—well, that isn’t very comforting, is it?
“All I want is a clean gown,” she seethed. “I can’t sit here in a dirty, stained …”
“Suzy, calm down. It’s okay.”
“It’s not okay.”
“No. I know,” I said, thinking she was talking about herself.
“This isn’t right, Nan. This shouldn’t be.”
It wasn’t like Suzy to lose it, especially in a public place, but she did lose it a little, and maybe it was good for her. She cried, inconsolable, about the stained gown that was really her ruined beauty, about the thin white blankets, which were really the flimsy treatments that offered her such pitiful shelter from the creeping chill of this disease. She mourned the day away from her children, which was really her fear of missing the rest of their lives. She raged at the docile flock in the waiting room, who were really the women of the world, waiting to be heard, wanting to know more than they were being told. Suzy’s hopes and dreams—all the things she’d planned to do and see and be in the world—had been flattened and boxed into framed dollar-store landscapes, and finally, for a moment, she allowed herself to be heartbroken by it.
I stood there, helpless, humbled by the enormity of what she was struggling to encompass, everything she could see so clearly behind her, and everything unknown that lay ahead. Denial, anger, bargaining, depression—there were even a few moments of reluctant acceptance. We’d been to all these places over and over, visiting and revisiting each stop like a shuttle circling beneath the airport terminals. Where do you get off? (I suppose that depends on your destination.)
Back at home, I drew a bath for Suzy. She never wanted me to come into the bathroom when she was uncovered or throwing up, but she was so weak and so violently ill that she needed me to undress her and help her into the tub.
“Oh, Nanny …”
The sight of herself in the mirror weakened her knees, and she sank into the water. She weighed not much more than a child in my arms. Holding her against my shoulder, I leaned in and washed her surgery-scarred back, then cupped water over her chest and dabbed at the broken skin. All the fighting spirit was gone out of me. Why the hell should anyone plaster on some vapid “positive attitude” in a situation like this? Rabbi Goff’s advice resonated with comfort for both of us. Suzy was dying, and it was hideous and unfair and tragic. We both had good reason to give in and cry, and we did.
“Oh, God, Nan, I look so awful,” Suzy wept. “This is horrible.”
“It is horrible,
Suzy. It’s awful, and I hate it. I hate that this is happening to you.”
“I feel so … so tired and so … ruined.”
“I know, Suz.” I touched my forehead to hers and wrapped a warm towel around her shoulders. “I also know that you are perfect. You are the perfect Suzy you always were, and nothing can change that, and nothing can change how much we love you.”
Suzy’s lungs filled up and had to be drained to keep her from essentially drowning inside her own body. They extracted almost a gallon of fluid from her chest as she lay gasping in agony.
When it was over, she clung to my arm as we made our way down the hall to the elevator. We stood quietly in the elevator, then made our way through the lobby. We pushed through the lobby doors, then made our way to the corner. I kept my eyes on the sidewalk, watching Suzy’s ballerina flats, one in front of the other, wanting to make sure she didn’t stumble. Every step was such an effort now. Her small frame felt as fragile as spun sugar.
Standing at the corner across the street from the little apartment, we waited for the light to change. Traffic roared by. A huge city bus loomed into view at the end of the block.
I’d want you to find a way to kill me. I’d rather be dead.
In the hitch of one breath, the thought passed through my head. How much easier it would be. A quick, merciful accident. Just to slip and fall through a crack between being and not being. Her suffering would be over, and I could scream loud and long and flail my fists against something solid. Suzy’s back was to me, but I wonder now if I would have seen that thought flash at the corner of her eye. Summer wind stirred a baby-fine wisp of hair trying to grow at the nape of her delicate neck. The bus closed in, looming larger. The driver’s face rose blank and focused as a gibbous moon beyond Suzy’s bony shoulder.
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