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The Middle East Uprisings and the Remaking of the Modern World
Timely and provocative, Generation Freedom looks at the historic youth uprisings sweeping the Middle East and what they mean for the future of peace, coexistence, and relations with the West. READ MORE
A Story of Family, Friendship & Learning How to Live
When bestselling author Bruce Feiler was diagnosed with a malignant tumor in his leg, he could only imagine all the walks he might not take with his daughters, the ballet recitals he would miss, the art projects left undone, and the aisles he might not walk down. READ MORE
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My Cancer Diary, Volume II
Friday, August 15th, 2008
Dear Friends and Family,
Some rain passed through Brooklyn in the last week, leaving us with a string of clear, beautiful afternoons. The Brooklyn Bridge, which just turned 125 years old, is looking fresh-faced and handsome overhead, its famed promenade glittering like the pot of gold at the end of a long journey to come.
On July 31st, I was admitted to Memorial Sloan-Kettering Hospital in Manhattan for the first of a dozen cycles of chemotherapy. Each cycle last one to three weeks. Because initial exposure to chemotherapy can trigger heart failure, I was kept at the hospital as a precaution. After what seemed like a month of anticipation, followed by a banquet of pills, a nurse hooked my arm up to an IV of Cisplatin and unwrapped three syringes of Adriamycin. The liquid in the syringes was the consistency of melted lollipops and the color of a Shirley Temple. I whispered to the drugs, “Be good to me,” then closed my eyes. Tears pushed against the inside of my eyelids. I didn’t want Linda to see me cry. What these drugs do to my body over the next three-quarters of a year will go a long way toward shaping the rest of my life: How long it lasts; how much quality I take out of it; whether I have one at all. The nurse noticed I was having a reaction.
“Are you okay?” she asked.
“Physically, yes. Emotionally, it’s just very intense.”
“Don’t worry,” she said. “These drugs are going to make you better.”
The biopsy on my left femur had confirmed that I have a high-grade, osteoblastic, osteogenic sarcoma. As my surgeon, Dr. Healey put it, “You have a bad disease.” Pediatric sarcomas appearing in adults are extremely rare, with a thirty-to-forty percent chance of recurrence in the lungs in the first five years. The morning I heard those figures was one of the worst of my life.
At the same time, these tumors are responsive to chemotherapy and in many cases can be cured outright. My doctors agree that the seven-inch tumor in my left femur will not kill me; it’s eventually coming out; but the cancer cells that have likely spread to my blood and are looking for trouble are the graver threat. For that reason, we are leaving the tumor in place for now.
My oncologist is Dr. Robert Maki of Sloan-Kettering. Bean-pole tall with aw-shucks reserve, he has the unfortunate quality of reminding some people of me (at least in appearance, and some pounds ago at that). If Dr. Healey is the rousing warrior, straight out of The Iliad, Dr. Maki is the upstanding do-gooder – think Gregory Peck as a young Abe Lincoln. He has called for four to six months of aggressive chemo, followed by surgery in which the bulk of my femur will be removed and replaced, followed by three more months of chemo, then extensive physical therapy. The Lost Year.
A lot of the specifics of treatment will be determined by how a 43-year-old man bounces back from a course of treatment used much more often in teenagers. As many of you have sadly learned, the idea behind chemotherapy is to flood the bloodstream with poison, which the more aggressive, rapidly dividing cells in your body hungrily attack. This includes malignant cancers, but also hair and the lining of the gastrointestinal track. My particular chemo drugs are also neurotoxic, meaning they assault the central nervous system. The body’s reaction is to rally around the vital organs to protect them, thus leaving more peripheral parts to suffer. I am therefore vulnerable to permanent hearing loss, as well as numbness in my fingers and toes. The resulting list of do’s and don’ts is quite precise, including no sushi, manicures, or tattoos. Really, how do metrosexual Japanese bikers get through this?!
On the side-effect front, my first week after taking the drugs was pretty brutal, with an ever-changing menu of nausea, heartburn, dry mouth, fatigue, and a smog in my head as thick as that over Mexico City. I probably sat up in bed less than one hour a day; ate only half a bowl of chicken soup and a cup of Jell-O; and grunted through the few phone conversations I was forced to have. With the fog in my brain, I would have had a difficult time picking out my daughters in a ballet line-up. I feared I would not leave my bed until Valentine’s Day.
After bottoming out around Day 7, my energy and appetite returned astonishingly strong. In my second week, I’ve coordinated over a dozen relatives moving up and down the east coast to help us out; supervised home renovations; and eaten a Michael Phelps-sized diet of barbecue, tacos and Grater’s cherry ice cream from Cincinnati. I have a third week to regain my strength before being walloped again.
So how have you all been reacting? Depends on when you get us, frankly. Our families have lurched into action, and my parents, in-laws, siblings, and cousins have helped us manage the house and the girlies. Much of the brunt of all this falls on Linda, who not only has a husband retching in the bathroom many nights at 2 AM but two darling daughters who have yet to fully grasp the meaning of, “Please play in your room until the digital clock says 7 AM!” Then, just when I hit the nadir, Linda came down with a case of shingles, forcing her to be quarantined in a nearby hotel for three days. As she said of this stress-related illness, “Message: I care!”
The girls have been adapting to our new lifestyle. In a bid to show them that losing my hair was an affirmative choice, as opposed to a negative reaction from the medicine, I had my head shaved like a Marine. They were instantly charmed by my “shoft” hair, their homemade combination of “short” and “soft.” In one of the more amusing sideshows around here, their grandmothers had the idea of feeding them a diet of films with bald, father-hero types to prepare for the inevitable hair loss to come. To date, this has included Daddy Warbucks from Annie and was about to include King Mongkut from The King and I until someone pointed out that he dies at the end of the movie.
In the early weeks, Eden and Tybee did show signs of empathy and stress. They stared intently at my new crutches, trying to figure out how they worked and what they meant. Eden suddenly had the need for multiple Band-Aids; Tybee started to limp every now and then. We had some bed-wetting and the occasional nightmare.
A few nights ago, at 4:30 AM, Eden went over to Tybee’s bed and started jumping up and down on the mattress. Linda got up to deal with this unusual outbreak but was quickly flustered. By the time I hobbled down the hall, Eden was on the potty, Tybee was crying, and general chaos had ensued. I tried every trick I know: Threatening. Offering “grown-up” points. Volunteering to tell a story. No dent. Worse: Tybee wanted to listen to Brazilian sambas and Eden wanted Disney love songs.
At this point, I lost it: I snapped at Linda; I screamed at Tybee; I picked up Eden and plunked her down on her bed. Then I began to sob. This was my worst nightmare writ large. My illness was ruining the lives of everyone around me. Linda was suffering. The girls were unraveling. I was a wreck. Our home had become a gruesome parade of psychological disfigurement.
I left the room. “If you want to speak to me,” I blurted to Eden, “come to my office.” To my utter shock, five minutes later she followed. I sat on the floor, and she climbed into my lap, perching on my right leg. I tried to perform some archaeology on her feelings. First she was mad at her sister. Then her mommy. Then she unfolded this story: Monsters have invaded our house, she said. They sit with us at dinner and eat us up. “Then we are lost,” she said, “because we can’t walk.”
Walk. The word leapt out of the story like a mushroom cloud. Walking had been such a hallmark around our house. Walking is what Daddy did. Even before they could walk themselves, Linda taught the girls that I had written a book about walking. Now, walking is exactly what I could no longer do, and in her nightmare, she couldn’t either. I didn’t need a Ph.D in child psychology to understand that she had internalized my illness and created an imaginary situation where the worst that could happen to her was that she would become like me. And what better description of our situation can there be: Monsters have invaded our house and are mashing us up.
By now the sun was coming up outside my office window, and Eden’s face seemed more tender than I had ever seen it. Her delicate skin sloped gently around her cheeks. The perky lips she inherited from her mother were puckered in fear and need. Her hair bobbed around her face.
I pushed the hair from her eyes, kissed her cheek, and held her close.
“I am going to make the monsters go away,” I said. “I have magic and can make our home safe.”
She looked down at my leg. “Is this your boo-boo leg?” she asked.
“No, that’s my better leg,” I answered.
“I want you to have two better legs,” she said.
“I am going to have two better legs soon,” I promised.
She reached down and stroked my left thigh.
“But I can still walk,” I said. “I just use crutches.”
“I want a pair of crutches like Daddy,” she said. “You have to share.”
I asked her if she wanted to go back to bed. She nodded. We walked the few steps to her door. Would she insist I come in? Would she start to cry? No. She padded off gleefully to bed and assumed her sleeping position. The magic had worked. The monsters were gone.
We have been touched, tickled, and just plain agog at the outpouring of best wishes. I’ve heard from half my high school class, a number of neighbors who remember my bicycle accident as a boy, and nearly every girl I ever kissed. I am heartsick at not being able to communicate with each of you personally, but please know that we are attacking this challenge with the full force of determination, love, and humor. We find piercing shafts of meaning on even the most challenging days. And we treasure the reconnections this situation has spun.
Cancer, I have found, is a passport to intimacy. It’s an invitation – maybe even a mandate – to enter the most vital, frightening, and sensitive human arenas. It’s a responsibility to address those issues we rarely want to discuss, but we feel enriched when we do. In that spirit, I hope you find occasion to ask a difficult question of someone you love, renew a long-forgotten promise you made to yourself, or spread a little magic of your own to help keep the monsters at bay.
And, please, take a walk for me.
Love,
Bruce
My Cancer Diary, Volume I
Tuesday, July 15th, 2008
Dear Friends and Family,
The mist lifts slowly off my in-laws’ back lawn on Cape Cod most mornings, revealing a day that is well under way and a layer of dew on the granite boulders. The sky has been gray over Snug Harbor the last few days but at last the clouds have magically parted and the air turned sunny once more.
I apologize for reaching out in this way, but the crush of events in recent days has forced us into a number of uncomfortable situations. I have learned that I have a seven-inch osteogenic sarcoma in my left femur. Put more directly: I have bone cancer. My sarcoma is considered very rare, and very aggressive. It has already eaten through the central shaft of my bone and corroded large portions of the thigh muscle around it. My knee and hip appear to be safe, and early signs that the cancer may have spread to my ribs and lungs have been downplayed. We believe it’s contained to my leg, but the situation continues to be very fluid and could change at any time.
The tumor was discovered by accident after a routine blood test in late May produced an elevated alkaline phosphatase number, a non-specific test indicating possible problems in the liver or bones. My liver was cleared, and a series of tests led us to where we are now. One remarkable aspect of my situation is that I am, for the most part, pain free. This type of tumor usually presents itself through pain, swelling, or fracture. In this regard, we are lucky. As one oncologist said to me recently, “Kudos to your internist for discovering your tumor early.”
Through the generous and swift intervention of friends, Linda and I had a consultation with Dr. John Healey, the head of orthopedic surgery at Memorial Sloan-Kettering Hospital in New York. Dr. Healey has been variously described to us as “the man,” “the one,” or “the guru” in this field. He’s a genial man in his early 50′s with an easy smile, a bow tie, and the unusual-but-arresting manner of speaking about three words every minute. If you hang on his every word – and boy do we! – you hang for a very long time. He also happens to be a fellow graduate of Ezra Stiles College at Yale University and, like me, a teenage juggler and clown.
Dr. Healey spent several hours with us and about halfway through our conversation said of the cancer in my leg: “In the worst-case scenario, this appears to be curable.” He also said several times, “This is a war, and I intend to win it.”
He also said he thinks my cancer is probably related to a bicycle accident I had when I was five years old in which I broke the same bone in the same place. Osteosarcomas in the femur usually appear closer to the knee or hip; mine is in the central shaft. We had assumed that the broken bone did not heal properly, or left behind some inflammation, that somehow cancerified four decades later. But Dr. Healey hypothesized that the arrow may point in the opposite direction. When he asked me, for example, how I had broken my femur, I gave what I assumed to be the only logical answer, “I was hit by a car.”
“But why that bone?” he said. He was suggesting that I had been born with a genetic predisposition that weakened my left femur.
Regardless, something happened between then and now that made my left femur different from the tens of thousands of other bones children break every year in the United States. And at some point a cell went rogue. A cancer was born. About six hundred Americans get an osteosarcoma every year and about eight-five percent are under twenty-five. Fewer than one hundred adults a year get this disease. (Compare that with 200,000 cases of breast cancer a year, or 190,000 cases of prostate cancer.) As a result, very little is known about how to treat this illness, especially in adults. No one wins a Nobel Prize for curing an orphan disease.
Had I faced this diagnosis twenty-five years ago, the doctors would have cut off my leg and hoped. Ted Kennedy’s son Teddy lost his leg to this disease when he was twelve. Only fifteen percent of patients survived. In the 1980′s, doctors discovered that a particular cocktail of chemotherapy was effective, quadrupling the survival rate.
Before proceeding down that route, I must receive a proper analysis of my tumor. I am scheduled to have an open biopsy in the coming weeks, during which Dr. Healey will cut into my leg and extract a piece of the bone. That will be sent for pathology, and then we will begin designing a course of treatment. We have been led to believe that I am likely looking at two to four months of chemotherapy, followed by surgery, followed by four more months of chemotherapy. The surgery will likely involve going into my leg, cutting out the tumor and some additional bone around it, as well as a chunk of muscle. A replacement femur of either cadaver bone or metal will be inserted. The bone will heal, I am told, the muscle will not. If we are fortunate, my leg will be spared, and my knee and foot will function as normal, though my movement will be permanently affected. As Dr. Healey put it, “You will walk, not run. Flat surfaces will be better than stairs.”
As you might imagine, this news has hit us with titanic force. After Dr. Healey finished explaining my situation, a nurse came in to have me fill out some forms. I asked her to give Linda and me a few minutes to ourselves. When she left, I broke down on the examination table. I had hoped against hope that I wouldn’t have cancer. I had yearned beyond yearning that I could avoid chemotherapy. My hopes were dashed. My yearnings crushed.
I stand at the dawn of a lost year.
At best.
So how are you doing? We’re hanging in there. We’re focused. We have good spells and bad. We have had plenty of tears and late-night conversations about each other, our lives, and our dreams for our girls. It is not easy. We are not heroes. No one aspires to be the person who handles this kind of situation well. And we don’t always handle it well.
Having said that, we have deep resources to draw on – two loving families, many friends, each other, and active minds that lead us both to develop fourteen-point plans for nutritional supplements and to imagine many scenarios, both dire and full of hope. And we have already found occasion to laugh. For instance, why exactly does the examination room of the leading orthopedic cancer surgeon at Sloan-Kettering hospital have a copy of Tennis Week at the top of a stack of magazines for patients to read?
How Is Linda? A star. One of the first casualties of this news was a trip to Nantucket we had planned to celebrate our fifth-anniversary. It was to be our first without the girls since they were born three years ago. Linda swallowed, teared up, took a breath, and moved on. As anyone who has been through one of these situations knows, the burden is invariably hardest on the spouse, caregiver, or “co-survivor” as they are sometimes called. Linda will have many challenges balancing her work, the needs of the girls, and an intermittently grumpy, perpetually gimpy husband (OK, so the grumpy has been there all along, but the gimpy is new!) Chemo is fun for no one.
With that said, Linda’s non-profit, Endeavor, is thriving. Last year the organization marked ten years/ten countries of helping entrepreneurs around the world, and Endeavor is poised to receive a generous grant from a private foundation in the coming weeks that will accelerate its growth. I can say with conviction that it is extremely important to me personally that Linda continue to devote as much time as possible to her inspiring work and continue to make some of the handful of international trips she has planned in the coming months. Life will change, but it cannot stop. In that spirit, I would like to ask anyone reading these words to join me in ways large and small to help keep Linda’s spirits up and to help her continue to give off the light she does to so many.
How are the girls? Eden and Tybee are also thriving. Turning three proved to be the moment when the gender switch flipped, and they are deeply focused on ballet, as well as princesses, cupcakes, and all things pink and purple. Actually, they are focused on one particular pink leotard and one chosen pair of purple “footed tights.” Three years of parental determination to bypass traditional gender color coding was summarily tossed down the pastel fairy hole. In the last few weeks the girls went bowling, boating, and played miniature golf – all for the first time. And at least one of those activities may be for the last: When Papa Alan, who’s just getting the hang of his new motorboat, decided to merely put-put around the harbor and shy away from the open seas, Eden quickly blurted out, “When are we going to go faster?!”
We have been consulting with experts on how and what to tell the girls about my illness, and early indications are to be honest but non-specific and have everyone repeat the same line. “Daddy is sick. The doctors are helping him. He’s going to get better.” Then we will watch like hawks to see if there is any change in behavior, including a lack of focus, increased aggression, or nightmares. They already see that Daddy is on crutches, and we can watch them adjusting. When Linda and I rejoined them on Cape Cod this week after a few days consulting with doctors in New York, Eden said, “I’m so happy you comed back.” We are proud of them, we love them, and I look forward to walking them down the aisle someday and to leading them on short walks, at least, around the world.
What can I do to help? We are very grateful for the many people who have asked this question, and the honest answer is that we’re trying to think through how to provide guidance that is truthful, realistic, and meaningful – and respects the genuine emotion behind it. We’re already finding that giving people specific things can be helpful – “Hey, Ma, I need a shower stool;” “Hey, Sis, we need a three-ring binder for all the paperwork;” “Hey, Bro, can you take some pictures of me before I lose my hair.” If you give us some time to suss out more completely what we’re facing, we’d love to have your support.
That’s the view from week one. I have been overwhelmed by the many emails and calls that have already started to come. We read every one. Please know that the onslaught of doctor consultations, insurance negotiations, crappy days, and glimmers of clarity in which I try to find some productivity or study the origins of a grand plié might mean I don’t have time to write you back, but your thoughtfulness will continue to give me comfort and strength. It is my intention to send out regular letters in the coming months to update you on my progress.
In the meantime, may you find clear skies out your window this summer, may your arrows all point forward, and may you find your way onto the open water sometime soon going just as fast as you want.
Until then, take a walk for me.
Love,
Bruce