The Secrets of Happy Families featured and tested on ABC’s Nightline. Watch the video here.
Sunday, January 31st, 2010
One-year ago today I was leaving the hospital after my 50th night in less than 150 days. Today, I sat on a stationary bike in a darkened room with over 100 other riders and pedaled for over half an hour. I spent the first half-hour today almost choking on my emotion, and by day’s end, as the inspirational founder of Cycle for Survival handed over a check to my doctors for $2.2 million dollars, I was completely overcome. Upstairs, Linda held Tybee and Eden in her arms and cried as she had not done in many, many months. The celebration was tinged with the news that a leading rider will begin chemo treatment on Tuesday for her fourth recurrence of a soft-tissue sarcoma in the last five years. We join the 2,000 other people who participated today in lending a shoulder of support for her coming days.
Thank you for participating in this deeply memorable day. Thank you to those who gave up their high-tech spinning gear for mere low-tech tennis shoes, to those who came in from New Jersey, to those who left their kids for the morning, to those who babysat, or sacrificed a more exciting day in New York City, or got cut off after just a few minutes on the bike.
And a deep thank you to those who donated to this extremely important cause – raising money to support sarcomas and other rare and orphan cancers. I met a men today who is already in a clinical trial that is being supported by money raised last year from this event. I am personally very grateful, as were the many children, family members, and others touched by the random horror of forgotten diseases.
We were not alone today. And we will not forget.
Bruce (and Linda)
To make a contribution or learn more about this amazing event, please click here.
Tuesday, January 26th, 2010
Few things take my breath away completely, unexpectedly. This did.
A few weeks ago I participated in a ceremony to ring the opening bell at the NASDAQ. It seems that someone’s stock truly went up that day!
Today, one of the people I met that day posted this beautiful story — the first printed comments about THE COUNCIL OF DADS.
This morning on my flight to San Francisco I read “The Council of Dads: My Daughters, My Illness, and the Men Who Could Be Me,” the latest book by Bruce Feiler that comes out this April. This is the first time in my life I have read a book cover to cover in one sitting and I can unequivocally say that Bruce’s book is the single most important and heart-felt and inspiring book I have ever read.
While the descriptions of the Council members and what each wants to share with Bruce’s daughters are poignant, enlightening and thought-provoking, it’s Bruce’s own writing about what it was like to fight the cancer during his “Lost Year” while facing imminent death, all in front of two young daughters, that makes The Council of Dads such an astonishing read.
His treatment included an aggressive chemo regime and a 15-hour surgery right out of a sci fi movie in which doctors removed several bones from his leg and reconstructed it in a titanium-filled procedure only one person has ever survived.
Please be warned that this is not one man’s grasp for attention — “look at me, I survived cancer.” It’s a journey of the mind and body, family and friends, love and sadness, in which the author stays present with his emotions throughout and recounts them with vivid detail.
“As you can see,” Bruce writes, “cancer is not linear. Our lives rock unaccountably – and unpredictably – among moments of hardship, stress, joy, pride, laughter and exhaustion. There is profundity to explore, but also laundry to do.”
Bruce’s ability to mix the profound and awe-inspiring with the mundane makes his book accessible and universally actionable to help you live a more balanced and focused life.
Early in his war against cancer, Bruce writes that cancer “is a passport to intimacy. It’s an invitation – even a mandate – to enter the most vital, frightening, and sensitive human arenas.”
By chronicling in such depth and compassion and pain his own relationship with cancer, Bruce’s book serves a passport to understanding and an invitation for each of us to ask ourselves “Who is my Council of Dads?”
Thanks Bruce for a wonderful book that will help guide my life for many years to come.
To read the entire review by Michael Lazerow, click here.
Thank you, Michael. See you on the bikes!
Monday, January 11th, 2010
A big milestone around here. One year ago I was just retuning from two weeks in the hospital following a 15-hour surgery to remove my left femur, replace it with titanium, relocate my fibula from my calf to my thigh, and cut out a third of my quad muscle. After fifteen months on crutches, two months on a single crutch, and a few months with a cane, I occasionally walk without any aid these days. I am thinking of celebrating by slipping on the ice outside my door!
To read my account of my harrowing surgery, recovery, and aftermath, click here.
Monday, December 1st, 2008
Dear Friends and Family,
Waves of wind, rain, and Arctic chill have passed through Brooklyn in recent weeks and the leaves are finally off the giant maple tree that shades our tiny backyard. With the shortened days and vagaries of a brownstone heating, we now face the riddle of winter: the branches are bare outside our windows but more light makes it into our home.
One morning recently I found myself making a series of lists. The first covered all the parts of my body that ached or pained or had something wrong with them. I got so overwhelmed I stopped counting at thirty. The second list mentioned all the times I had cried in the previous few weeks. This tally included a few pieces of bummer news, at least one occasion of self-pity, a bout of agony at the pain I was causing my family, and a tearful bit of anticipation at receiving a friend’s news that she was cancer-free after five years. The final list counted all the places I would rather have been that day. This list was rather long.
It was my birthday. I was in the hospital.
As feared, the last few months have been challenging. I passed into the belly of the chemo colossus and experienced many of its most ferocious side-effects. First, I got an ear infection, followed by pneumonia, and had to forego several weeks of treatment. Then, twice in the span of three weeks I was hospitalized on five-minutes notice – once for elevated methotrexate toxicity in my kidneys; the second when my white- and red-blood counts fell to near-zero, and I had no effective immune system.
My doctors considered these developments routine and were not particularly alarmed, but they are evidence that the regimen, as promised, is taking its cumulative toll and making my body weaker. Also, the physical and emotional challenges of spending four days in a hospital cancer ward all twisted up in IV cords and pumped up on steroids are considerable. At one point I wrote Linda: “It’s so much worse than anyone will ever know.”
Still, I managed to pass through this unpleasantness and am excited to be nearing the end of the four-plus months of pre-operative chemotherapy. My doctors are giving me several weeks off to regain my strength, before the surgery happens in late December. At the moment, Dr. Healey is planning a fairly innovative, sci-fi procedure. He will cut out the eight-or-so inches of my left femur that houses the primary tumor, then replace it with a titanium prosthesis. He will also remove the parts of my thigh muscle that have been corroded by the cancer.
A plastic surgeon, Dr. Bebak Mehrara, will then remove most of my left fibula, which we’re told is an extraneous bone that doesn’t need replacing. He’ll graft the fibula to the healthy parts of my left femur; then screw it to the prosthesis. He’ll then reconnect the fibula’s blood vessels to those in my upper leg. The idea is to take the inorganic object – the titanium – and fuse it with an organic object – the fibula – to make the resulting construct as strong as possible. To give you an idea how rare this is: Dr. Healey told us he has only done this procedure twice. But for what it’s worth: One was on the special teams coach of the Jets, and as those in the New York area know, Gang Green’s special teams have done quite well this year!
Following the surgery, I’ll face several weeks of intensive, in-patient recuperation before being thrust almost immediately back into post-operative chemo that should last another three months. At that point, with my body likely depleted and my mobility impaired, I’ll begin physical therapy. As I’ve been referring to all this since July, I’m looking at The Lost Year.
So how are you holding up? I’m wobbly, at best. A few times in recent weeks, as I passed through rocky moments, I’ve wondered whether there is some correlation between cellular weakness and emotional sensitivity. The feebler I get the more acutely I feel the pain, especially emotionally. When my mother-in-law called me one night in the hospital a few weeks back and told me she thought the girls were suffering in my absence, I put down the phone and bellowed into my hands. There’s a reason a primal scream is called a primal scream. Some fears are primordial.
Still, for the most part, we continue to take the hits, adjust our sights, and alter our expectations. Linda, in particular, has felt squeezed at times by having a husband in a hospital room across the river and two three-year-olds at home. She cancelled her trips abroad, held conference calls from her cell-phone in the chemo clinic, and struggled with my sometimes stoic silence.
The issue of how much discomfort to share with her and others who are already overburdened by caring for me has been a puzzle. One night Linda lay down on our bed and announced I simply had to share more of my struggle with her. I told her I was only keeping quiet to protect her, but when she insisted, I promptly unloaded my catalogue of minor ailments and anxieties. She became so rattled she didn’t sleep for two days. Stoicism does have its virtues.
But a few of the dates that meant the most to me this fall did occur during “up days” in my treatment. Foremost among these was Linda’s annual fund-raising gala for Endeavor. The event, which raises money for Linda’s pioneering work supporting high-impact entrepreneurs in emerging countries, is like having a wedding plopped down in the middle of our lives every year: Black tie, five hundred people, seating charts, sensitive egos, and high-stakes toasts.
To add to the pressure, I was hospitalized as late as 72 hours before the event. But at the last hour my bone marrow rallied, and, in one of the few benefits of having lost so much weight, I was able to tuck myself into my wedding tux at the weight for which it was originally tailored. I even ditched my crutches for the night and strutted through my responsibilities as Endeavor’s First Man. As Linda radiantly spoke of her organization’s amazing accomplishments this year, and as Endeavor’s chairman, Edgar Bronfman, Jr., paid tribute to her incredible hard work even during her personal struggle, I was hardly the only person raining tears in the room.
For all the joy of this event, some warning signs did emerge for future years – and I’m not referring to fund-raising. I’m referring to fashion. We have a category of marital accessory in our household that if I felt I had any standing at all as a relationship guru, I would recommend for all successful marriages, and that is: The Gala Dress, otherwise known as The Thing About Which I Don’t Ask – Where It Came From, What It Looks Like, How Much It Cost.
I’ve been quite proud of my hands-off attitude over the years, but this year I realized I might have to change my policy. The girls were quite excited by all the effort put into mommy’s appearance, and managed to get their own nails done, too, at The Dashing Diva up the street. They were even jazzed to see Daddy in his “tup-xedo.” But as I was leaving for the event, they announced: “Next year we’re going to get Gala Dresses, too!” Uh-oh. The Domino Theory is back – and this time it seems to be working.
The big picture. As you can see, cancer is not linear. Our lives rock unaccountably – and unpredictably – among moments of hardship, stress, joy, pride, laughter, and exhaustion. There is profundity to explore, but also laundry to do. Someone asked me recently whether the “up days” of chemo, following the “down days,” suddenly seem beautiful and full of hope. Maybe, but I’m usually too busy unclogging the sink.
In that regard, we are very grateful for the many hours, afternoons, and weekends that our families and friends have spent helping us endure, and enjoy, this time. A special thank you to the Class of 1983 at the Savannah Country Day School for taking time out of our reunion to send such robust best wishes. And our warmest embrace to all those who have sent nourishment, diversion, cards, and prayers. We have composed thank-you notes many times over in our heads. Please bear with our bad manners and know that we feel your support.
After five months, I have (mostly) accepted that I cannot anticipate or design how I will feel on any given day. One of my mottoes has become: “No excuses. No apologies. No planning.” If someone makes me a giant bowl of chicken soup with matzah balls and I have a sudden craving for marinated artichokes and Milk Duds, I go with my craving. If someone flies in from Kazakhstan and cancels a lunch date with Mayor Bloomberg to come for a visit and I need a nap, I take the nap. I only wish selfishness was more fun!
As we head into the holiday season, the one list we know that is longer than ever is the one that contains all the things for which we are thankful. And if we’ve learned anything during this process, it’s to take a moment to share that list with those who are on it. Recently I was speaking to a friend who had lost her father before her first birthday. The one thing she most missed from her father, she told me, were letters directly from him. My friend’s older sister had received some, but she had not, because she was only a baby. Every year, my friend shared with me, she took time to write a letter directly to each of her children telling them how much she loved them.
I can think of no better holiday wish from us to you. So in this season of anxiety and hope, may your home be filled with health, your lists with joy, and your letters with love.
And please, take a walk for me.
Wednesday, October 1st, 2008
Dear Friends and Family,
Even as summer drifted from view, September was the most beautiful month we have seen for some time in Brooklyn, with bright skies, clear nights, and just a hint of coolness in the air. We are beginning to get whiffs of fall and the outbreak of pumpkins and spray-on cobwebs that mark the arrival of Halloween, a national holiday in kid-friendly Brooklyn Heights.
A few weeks ago my parents and in-laws arrived to help celebrate Linda’s significant birthday. (“Mommy’s turning forty!” Tybee announced to everyone who would listen.) The day corresponded with the beginning of round three of my chemotherapy. I stayed in bed all day so I could rouse enough energy to sit upright for a few hours that night in a restaurant. After the meal I crutched my way to the bathroom and asked the waiter to stick a candle in a chocolate cake for Linda. When the cake arrived with no candle, I nearly lunged at the man, who apologized and returned moments later with a solo scoop of lemon verbena sorbet with a single candle perched on top. Linda held her breath and prepared to blow, and for the first time I can ever remember, none of us wondered what she was wishing for.
We were all wishing for the same thing.
Three months have passed since I first learned I have bone cancer, and our lives for the moment have settled into a new normal. I have been through three of the four rounds of Cisplatin and Adriamycin I am slated to get before the surgery. While each time I get knocked out for about ten days, we have all somehow managed to adjust to the discomfort, exhaustion, and dislocation. The early signs suggest these treatments may be having a positive effect. My tumor has shrunk by about one-third; some of the warning levels in my blood have returned to near-normal; I have more mobility. As my otherwise circumspect oncologist reported, “You’re kicking this tumor’s butt.” And my surgeon observed, “Only green flags, no yellow or red.”
Having said that, both of my doctors have prepared me for the reality that my body will probably not bounce back quite as well from future treatments, that a host of complications still linger at every turn, and that the surgery itself will take quite a toll. But in the meantime, they are happily adding a third, more toxic drug to my regimen. This month I will begin four rounds of high-dose Methotrexate. (Query: Why do chemo drugs all have names that sound like comic-book villains? Now that the evil, octo-armed Cisplatin has been felled, here comes the dastardly Methotrexate to threaten Gotham City…) Methotrexate is given in weekly doses, not tri-weekly, so we’re bracing for a relentless few months in advance of the surgery.
So what’s it like around there? A challenge. I’m skinnier than at any time since our wedding. I’m bald. I’m on crutches. A cold I caught this week lasted three times longer than it normally would have. Just the other night I lay awake in bed, muttering to myself, “Nothing good ever happens to me anymore.” Later, I had a dream in which I imagined life around my home after I had died and was no longer living here. It ended with me walking into my office and seeing photos of someone else’s children on my desk. I screamed a deep-throated scream and woke up.
We have been struck that our situation raises one unfamiliar challenge. We are at an age when many of our friends are dealing with the issues surrounding aging parents. As unpleasant as these issues are, most of us know we will face them – and know many who already have. But when the person getting sick has four living parents, as I do (counting mine and my in-laws), the illness overturns the natural order of life. Few of us have the emotional vocabulary to deal with this reality, especially when those parents move back in for a while.
More than once I have scowled at my mother for treating me like a child or suddenly prying too deeply into my bowel movements or sex life. (No, I didn’t check whether Cisplatin could be countervailed by Viagra, but thanks for asking.) I growled when my mother-in-law called an an air-conditioning repairman for our guestroom, when the device just wasn’t turned on. If nothing else, we need our parents now, and we are grateful for the disruption they are causing to their own lives to help us – and our daughters – thrive. But setting new rules has been trying.
As for Linda, her life can be pretty crummy these days – from daily insurance battles to a perpetual slog through hospital waiting rooms to a husband who barely looks up from his pillow. I spend a lot of time staring into space. Linda keeps saying, “I’m so sorry this is happening to you” or “You don’t deserve this,” but I don’t often find it comforting. One night recently I was performing my grim bedtime ritual: Putting down my crutches, pulling my pants and underwear down to my ankles, sitting down gingerly on the bed, pulling my pants and underwear up over my right foot, then, after lifting my left leg carefully with two hands, kicking them off my left. I then repeat the entire exercise in reverse with my pajamas, a humiliating routine that has now added nearly a full minute of stomach-wrenching indignity to the simplest of everyday tasks.
Observing the look on my face, Linda asked, innocently, caringly, “What’s wrong?”
“My life sucks, that’s what’s wrong,” I snapped. I instantly felt miserable. I took her in my arms and kissed her. “I’m ruining your life,” I said. “I feel so bad.”
Even with all this agony, Linda managed to find some joy in recent weeks. She helped our girls have a wonderful summer, including time with the Rottenbergs on Cape Cod and the Feilers on Tybee Island. Her friends showered her with cupcakes and massages for her birthday. And though it will be taxing on us, I am excited that Linda is scheduled to make brief trips to California, Argentina, and Dubai in the coming months.
The girls, meanwhile, are doing great. A few blips aside, Tybee and Eden are sprouting with maturity and showing fewer signs of stress. They were gleeful at learning to swim by themselves at the beach this August. They daily prance around belting their new theme song, from The Sound of Music: “I am sixteen going on seventeen … Totally unprepared am I / To face a world of men.” And they are so consumed by reading that they regularly correct our spelling.
We had a moment of crisis a few weeks back when during a regularly scheduled tea party, a friend asked our darling Purplicious (Eden) and Pinkalicious (Tybee) what their favorite colors were. Eden, per years of preference, said “purple and rainbow.” Then Tybee, overturning equal years of pink intransigence, also said “purple and rainbow.” For a second time stopped, the heavens parted, and it was one of those moments as in the Book of Joshua when God seemed on the verge of hurling the planets toward Earth. We all felt as if we were witnessing a once-in-a-lifetime alteration, like the changing of the Coke formula or the fall of the Berlin Wall. Linda was ready to cheer this sign of growing up, but Daddy quickly stepped in. “Mommy has already bought you a college tuition worth of pink sweaters, coats, mittens, and snowsuits. I’ll be darned if you’ll wear anything but pink until spring.” The Old World Order was quickly restored.
So what’s the big picture? After months of living with cancer, I still find it easier to be at home rather than venture too far into the world. Here everybody knows I’m sick, and it’s safer. Often when I’m driving down a busy street and looking out at all the pedestrians, I think to myself, “That person doesn’t have cancer. That person doesn’t either.” Seeing other people walk without thinking can bring on a surge of sadness – or anger. “Do you know how lucky you are?!” I want to shout. As someone said to me recently, “We all have a gun pointing at our heads; it’s just easy to forget.” This year, at least, we won’t forget.
Still, the many emails, letters, and gestures we have received from far and wide have reminded us that we are not alone, and that even as we all hurry down the avenues of our own lives, there are many invisible eyes looking out for us and prepared to hurl a few planets our way if the need arises.
Thank you for being a part of that, and if these letters have caused you to pause even for a few minutes in a busy day, perhaps you’ll consider some of the gestures that have brought meaning to our family. Write a Friday missive to forgotten friend. Reach out to someone you kissed – or kissed off – long ago. Remember a forgotten wish.
Or, take a walk for me.
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.
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.
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.