The Secrets of Happy Families featured and tested on ABC’s Nightline. Watch the video here.
Monday, December 10th, 2012
Monday, July 13th, 2009
Dear Friends and Family,
The morning sun is shimmering off Snug Harbor this week and the skies over Cape Cod are as bountiful as the blueberries our girls picked this morning. The clear days and fresh fields are a welcome relief from a long spell in New York marked by “May Gray,” “June Gloom,” and this year’s Summer Solstice, the Cloudiest Day of the Year.
Last week I went to visit a friend I hadn’t seen in a while. I sat in his chair in New York’s trendy Meatpacking District surrounded by disco balls, leopard divans, and dolls with pink hair. Michael Angelo (yes, that’s his real name) gave me a hug as we talked about the horrendous ordeal that has elapsed since we last met. Then he went to work. It was 5:30 PM on the 365th day of my Lost Year, and I was about to do something I had not done in that entire time.
I was getting my hair cut.
Twelve months have passed since I first learned I had an osteosarcoma in my left femur. During my recent quarterly check-ups, I received much good news. There are no signs of cancer in my bones or lungs. My prosthesis is growing nicely into my femur. As Dr. Healey said, “You are on your way to recovery. Truly.”
He then added, “But we both know …”
On the sobering front, the chemotherapy has left me with neuropathy in the tips of several fingers. The fibular graft is not fusing to my femur in quite the way we hoped, and I may have to have more surgery to correct it this fall. And my leg is still a burden. We reach this one-year milestone with relief, if not champagne. My Lost Year is over, but my long road continues.
Since April, I have been attending a superb physical therapy facility at the Hospital for Special Surgery in Manhattan. (Its official name, still visible on the uniforms of its employees, is The Hospital for the Ruptured and Crippled. Branding by Dickens?) I am under the sage, demanding care of Theresa Chiaia, a onetime basketball prodigy who now regularly supervises the care of assorted Mets, Yankees, and other area divas. On my first visit, she carefully analyzed every stretch, bend, and lift of my leg, then announced, “I think your prospects are promising.”
Theresa has me on a strict schedule of exercises, weights, and stationary bike riding. I also work out in a pool and walk on an aquasizer, which is basically a treadmill with shoulder-high glass walls that fill with water. It’s like strolling in a washing machine.
The encouraging news is that I am making measurable progress, occasionally walk with only one crutch, and hope to move to a cane by fall. But the truth is that after fifty-two straight weeks on crutches (that’s nearing three percent of my life), I sometimes grow weary of the challenge.
Having said that, people often remark that they hope to live long enough to take advantage of a medical miracle. I have lived that long. Twenty years ago doctors would have cut off my leg; even a decade ago, my surgery would not have been possible. That I stand today – and on two legs, no less – is a testament to the skill and tenderness of a great many well-trained hands and minds. Whatever life I enjoy from now on comes entirely from their grace, and for that we will always be grateful.
So how are the girls? Great. Now that July Fourth has gone, I think we can say with some confidence that Eden and Tybee’s April 15th birthday has finally come to an end. Their final gift was a week in California, during which they visited Legoland, made their own dresses in Beverly Hills, and squeezed hand-picked lemons for their first lemonade stand. Their mother, the guru of entrepreneurship, was pleased with their marketing acumen and their monopolistic control of the playground but was concerned that they underpriced their product, charging only a dime instead of a quarter. One thing they definitely learned: Don’t dump your till in the sandbox!
As time came to leave Los Angeles, Tybee announced, “I never want to go back to Brooklyn.” Some of this was surely the hospitality we received, but more, we suspect, came from having the undivided attention of her parents. Tybee and Eden are growing up quickly these days, enjoy running their fingers through my hair, and are showing few signs of the trauma they endured. Above all, they appreciate having Daddy back.
Recently, during our nightly game of Bad & Good, Eden’s good was, “Daddy is using one crutch now, so I can hold his hand.” Tybee followed with this bit of wisdom. “I have so much love in my body for you, Daddy, that I can’t stop giving you hugs and kisses. And when I have no more love left, I just drink milk, because that’s where love comes from.”
How about their mother? A few days before arriving at my one-year milestone, Linda and I reached our six-year anniversary. We grilled on our deck, used our (rarely used) wedding china, and counted our blessings.
And we talked.
When I first met Linda eleven years ago, she was strong, dynamic, and charismatic. But she was also, I joked, the least dark person I had ever met. Her outlook on life ranged from thumbs-up to thumbs-sideways. By her own admission, she was unsure around the pained emotion, uncertain around the afflicted friend.
This year has changed that. I have watched as Linda absorbed the pummels and emerged not only with her head unbent but with new dimensions in her heart. There were days when her thumb simply had to point down, and the forced practice was transformative.
“My experience makes me want to reach out to people who are in pain,” she said. “Before, I would have been uncomfortable, or unsure of what to say. Now I realize what you say doesn’t matter. It’s that you say something at all.”
Even more, where Linda had always prized self-sufficiency, she now allows – even embraces – her own vulnerability. Particularly for a woman in business, she mentioned, the instinct is to overcompensate, to lead only with strength. But letting people in made her own struggle easier, she said, and in the process made her a more compassionate leader.
Finally, what Linda appreciated about the last year, she said, was that every decision was simpler. It was easier to say “No.” In the parlance of modern life, the noise was reduced, the signal strengthened. And as she resumes her own stride forward, her wish as a parent, spouse, and friend, is to hold on to a fragment of that lucidity.
To keep the clarity.
And you? A few weeks after I was diagnosed, I spoke to a friend who had undergone a similar chemo routine. He lost most of his hearing, the feeling in many of his fingers and toes, and about fifteen percent of his cognitive ability. I was horrified.
Today, whatever physical ailments I endure, I am pleased to report that my mind and spirit are unbowed. My blood may have been ravaged, but my lifeblood remains untouched. I am myself.
But I do have scars – and they flare up at unexpected times.
In April, Linda and I attended the Bat Mitzvah of a friend’s daughter, Alison, at the Boathouse in Central Park. Alison’s mother sang a song to her daughter. It was called “Parent’s Prayer.”
May God give you life, and strength, like Joseph’s sons….
May God make you like our parents, our blessed ones.
Like most people in the room, I teared up. But in my case, as my mind turned to our girls and their own life occasions I may miss someday, my tears wouldn’t stop. I tried to shield my face but couldn’t. I reached for my crutches and fled the room.
Outside, row boats were in the basin. Families were enjoying the warmest day of the year. The scene was straight out of Manet. For the first time in weeks, I convulsed with tears. And that’s when I realized these emotions would never fully disappear. They will reside in my body forever and return at unforseen moments. The monster within.
During her Bat Mitzvah ceremony, Alison had read from the Book of Leviticus. While Leviticus is perhaps the least loved book of the Bible, it also contains the Holiness Code, the highest expression of ethics in the Ancient World. One verse, Leviticus 25, is quoted on the side of the Liberty Bell: “Proclaim Liberty throughout the world, unto all the inhabitants thereof.”
This line refers to a tradition whereby every seven years, farmers are obliged to give their fields a year of rest, a Sabbath. Every seven sets of seven years the land gets an extra year of rest, during which all slaves are to be freed, all families reunited, and all people reminded to uplift the needy and tend the sick. That fiftieth year is called the jubilee year.
And though I’m still shy of fifty, that tradition perfectly captures this past year for me. I was forced to lay fallow. I took off the trappings of contemporary life – vanity, ambition, pretense – and entered into a sort of parallel time where I was compelled to do things the Bible envisions. Be needy. Be a stranger. Be uplifted by those around me. Be reunited with the ones I love.
My Lost Year was my Jubilee Year.
And the jubilation, such as it was, lay exactly where God always knew it would: In lying fallow, I became more fertile. In taking pause, I planted the seeds for a healthier future.
Naturally I worry that I might forget what I learned. I might slip back into the easy tug of whatever vices attract. Having taken off those old clothes, I am tempted to pull them out of my closet and resume my old life as if nothing happened.
But far beneath those clothes I have a lasting reminder of where I’ve been. In the Book of Genesis, Jacob wrestles with an angel one night and comes to a standstill. The angel leaves a mark on Jacob’s thigh to commemorate his struggle. Forever after Jacob walks with a limp.
I, too, have a mark on my thigh, and though mine is far less lofty, it’s a permanent sign of the wrestling I’ve endured. Touch it, and it takes me back to darkest moments of despair and the brightest moments when others came to uplift us.
A few days after the Bat Mitzvah, Eden came crying to the side of our bed late one night. Monsters had come into her room and tried to take her stuffed puppy, Do-it. “The best way to get rid of monsters is for us to work together as a family,” I said. “Would you like me to sleep with Do-it tonight? That way, when the monsters come, I’ll say ‘No, Monster, no!’ And they’ll go down the stairs, out the door, and leave us alone.”
Again we had stumbled into a poignant metaphor for our lives. Monsters came into our home last year. They kept us awake for many months, but we worked together as a family, and, for now at least, they’ve gone down the stairs, out the door, and left us alone. We still shake occasionally in their wake. We have no guarantees they won’t come back. But if they do, we know that the most effective defense we can muster is the best offense we have: to work together as a family.
Thank you for joining our family this year. Thank you to the friend who sent a postcard every day. To the friends and relatives who sent notes, bits of beauty, and casseroles. To those who pushed the swings, repotted the plants, and dried our tears.
To those who just read these words, thought for a second, or prayed.
And as this year closes and these letters grow further apart, we turn our thoughts to you. May you find an ounce of jubilation in your own pain, may you enjoin your own fears, “No, Monster, no!”, and may you drink from a bottomless glass of milk and remember where loves comes from.
And one of these days, please, may you take a walk for me,
Tuesday, April 14th, 2009
Dear Friends and Family,
The cheery clarion of sun wakes us up most mornings these days and lingers well past dinnertime, though chilly showers still puddle the ground and keep our coats and mittens close by. But the pear tree across the street has just erupted into full blossom, our own private promise that spring is here to enliven us again.
Those blossoms have come to signal another yearly milestone for me. Four years ago tonight, Linda and I ventured across the street from our apartment in Manhattan. Then, as now, we mazed our way through a protracted, nine-month ordeal, full of doctor’s offices, endless tests, and the occasional outburst of anxiety. Then, as now, one of us was just being allowed up from three months in bed with the occasional foray onto the couch. And then, as now, we had counted the minutes until the arrival of spring. That night we sat in a neighborhood Italian restaurant, ordered flatbread pizza and our first glass of wine in months, and simply enjoyed being out of the house. What I most remember from that evening was looking into Linda’s eyes and thinking, “She’s ready.”
It was April 14, 2005. The next day she would give birth to our daughters.
We tell time around our house by the girls’ birthday (and trust me: it comes up hourly, no matter the season!), and this year is no different. After nine-and-a-half months, twenty-nine nights in the hospital, one hundred visits to the doctor, a thousand pills, and several thirty-pound swings of weight, my chemotherapy has come to an end. I’m done. As promised, the last several rounds were challenging, as my body got weaker and the cumulative side effects worse. The short-term pain in my leg became intense with each dosage. And by the end, as I waited for the results of the final blood test that would either send me back into the hospital or absolve me from any more visits to the clinic, I was holding my breath. “Your numbers are great,” the nurse reported in a call. “You don’t have to come tomorrow.” I put down the receiver and broke down on the couch.
I arrived at this day with some trepidation. On the one hand, the daily assault on my body that began last July has finally ended. On the other hand, we are no longer actively attacking the problem. We have given my body the best treatment it can receive, and we have either killed the cancer cells that were likely circulating in my blood, or we have not. And we have no way of knowing. (For this reason I will get multiple scans every four months for the foreseeable future.) In the final weeks I begged my doctors to give me more chemotherapy if they thought it would help. The kids who more commonly get this disease are given more. But my doctors felt the possible benefits did not outweigh the considerable down sides and declared me finished. Suddenly time, which since last summer had been completely dictated by the relentless schedule of treatment, would become my own again, both a welcome and an unnerving development.
With the few weeks that have passed, my appetite, my energy, and even my hair have begun to return. (I had an inkling of hair in January, but like those sucker February daffodils that are wiped out by late-season snow, my fuzz quickly got its comeuppance. I am disheartened to report that my hair seems to be returning with bald spots in place, a cruel Groundhog Day curse to relive the arrival of middle age.) And in perhaps the most vivid parallel with pregnancy, my mind has already begun to erase the unpleasant memories. So before my own brainwashing is complete, let me close this chapter of my Lost Year by saying what I said to Linda that final night of chemo: “May you live to a ripe-old age, kiss goodnight the ones you love, and die peacefully in your sleep, rather than go through what I just went through.”
One unabashedly positive outcome of the end of chemo is that the full healing of my surgically repaired leg, which was impeded by the chemotherapy, can finally begin. As Dr. Healey said to me recently, “The clock starts now.” The reason is that until the bone fully fuses with the prosthesis, I must remain on crutches and limit the weight I put on my left leg. Nearly four months after my surgery, I am making considerable progress with my mobility. I now stand in the shower, bend over to put on my shoes and socks, and take short, crutch-aided walks in the neighborhood. Many times I look down at my leg and feel it’s a miracle it’s still there.
But there are other times when I am nearly overwhelmed by the dead weight I am dragging around and the long road I have to endure. The big picture is that one needs three muscles to walk — the calf, hamstring, and glutes – and all of mine are basically fine. I have three principle problems: limited flexibility in my ankle; restricted bending of my knee; and the loss of one-third of my quad. These alternately make sitting, walking, sleeping, driving, and making peanut-butter-and-jelly sandwiches challenging. (My wife reports that I somehow have enough mobility to remove dishes from the cupboard but not enough to place them in the dishwasher.)
I have begun physical therapy and my team is bullish on my recovery. Last week I was on an exercise bike; yesterday I was walking in a pool. But the process – call it phase four of our war – will extend for at least a year. I’ve been joking that physical therapy means taking it one grunt at a time. Or, as Dr. Healey vividly said of the chorus of aarghs and ughs that comprise a normal session, “In PT, we measure progress in decibels.”
But how about those birthday girls? How are they doing? Back in January I lay awake one night feeling that my protracted stay in the hospital following surgery and subsequent bed rest at home had left me somewhat estranged from the girls. Today, after three straight months around the house and over a month of crutching up and down the stairs, those memories seem happily remote. Tybee and Eden are barreling into their fourth birthday (or maybe I should say careening on their brand-new, “big-girl bikes” with training wheels) as feisty, sensitive, cheery, talkative, and imaginative little pre-teens – oops, little girls. They have weathered an enormous amount of irregularity in recent months, and they have done so with grace and good humor.
I am pleased to report that their color palette has tiptoed beyond purple and pink – Eden has added blue and green; Tybee has added chocolate. Ballet has been augmented with swimming. The washing of hair and the brushing of teeth now often pass without U.N. intervention. But their minds most ignite and their giggles most endear when they are making-up fantasy games with their imaginary friends, spontaneously inventing verses to a song, or chuckling through a rhyming game at dinner. I knew I had to re-calibrate my view of them when I recently found myself talking about “Terrific Tuesdays” and “Wonderful Wednesdays.” “What kind of words are those?” Tybee asked. “They’re a kind of rhyme,” I said. “But rhymes sound the same,” Eden corrected me. I gulped, saw my future flash before my eyes, and proceeded to explain the meaning of “alliteration” … to three-year-olds! I, of course, had to look up how to spell it, but by the next day they no longer did. Eden and Tybee may not yet have to do homework, but we do just to keep up with them!
And yes, there are differences between the two. Eden is the bolder dancer, the boundary tester, and the seeker of the spotlight. Tybee is the speedier reader, the more beauty conscious, and the melodramatic singer-songwriter. Tybee also appears to be the Internationalist of the two, snarfing up all the German and French books she can get her hands on and insisting that Linda teach her Hindi after a recent stint in India. Eden, by contrast, is the America Firster. Recently Tybee was quizzing me about why I say “I love you” so much. “It’s the special language of Daddies,” I said. “Would you like to know how to count to ten in ‘Daddy?’” Then I began to say, “‘I love you. I love you. I love you…’” all the way up to ten. Not missing a beat, Tybee announced, “Do you know how to count to ten in ‘Tybee’?” Then off she went on her own string of “I love yous.” Eden was having none of it. “Would you like to know how to count to ten in ‘Eden’?” she asked. “One. Two. Three. Four….”
Above all, if you had told me last summer we could get through the brunt of my treatment with only a handful of awkward moments with the girls, I would have wept at the chance. Today, I see that they may even have learned how to be a bit more sensitive, an ounce more caring, a dose more compassionate as a result of their experience with me. They run to embrace the girl with an amputated leg on the playground. They spot the rabbit with the crutches tucked away in the back of the children’s book illustration. They promise to take care of each other the minute one manifests even the slightest sniffle and have invented a special cheer to make any medicine they must take go down.
A month or so ago I made my first outing with the girls since the surgery in late December. Linda’s Mom and I took them for pizza a few blocks away. After dinner, the girls were holding Grandma DeeDee’s hands as we rounded the corner for home. I was bringing up the rear, a block behind, when Tybee suddenly broke away from her grandmother, came sprinting back to me, and offered to help with my crutches. “I love you, Daddy,” she said. A few days later Eden woke up in the middle of the night and came to my side of the bed and told me about some monster or nightmare or little girl fright. She came into my arms for a cuddle and then I persuaded her to let me walk her back to her room. As I got out of bed, she reached to hand me my crutches. If I could cling to one memory from this last year, it would be me and my daughter, walking down a darkened hall a little after four in the morning, with five little fingers grasping the spongy handle underneath my hand. The crutch at that moment melted from my arm as it was supporting her instead. I, of course, didn’t need it anymore. I was walking on air.
Us. I mentioned earlier that we tell time by the girlies’ birthday. What I meant was that for Linda and me, April 15th has always been not just about them, but about us, too. That first year it was about Linda making it through the shoals of a high-risk pregnancy, enduring the setbacks of bed rest, and prevailing through the ordeal of giving birth to two six-pound babies within thirty-two minutes of each other. Then it became about surviving our own ineptitude and maneuvering through the Herculean challenges of taking care of two babies when we didn’t how to take care of one – and still managing to emerge speaking to each other. Then it became about the weaning, the potty training, the picky-eating – the toddler two-step of terribles and tantrums that we had to traverse in tandem.
And then came this year.
And we made it through that, too.
When Linda was pregnant, every night before going to sleep we had a little poem we would recite to the girls. We both had lines; I’ll put Linda’s lines in italics.
Daddy loves you.
Daddy loves your Mommy.
Your Mommy loves your Daddy.
Your Mommy loves you.
You love each other.
You’re still individuals.
You’re still individuals.
Then we added a kind of countdown clock – our way of encouraging them to say in Mommy’s tummy for thirty-six weeks, full-term for twins.
You’ve been in Mommy’s tummy 24 weeks…
Stay in Mommy’s tummy 12 more weeks!
This poem became so meaningful that it was the first thing I uttered to Tybee and Eden on the night they were born – my attempt to calm their tears and dim the din as they made their way into an unfamiliar world. For months afterwards, when we put the girls to bed, we repeated our poem and reversed our ticking clock, beginning to log time upwards. Nowadays, we recite this poem only once a year, on their birthday, and we will do so again tomorrow night before they go to sleep. They will probably ignore us, or beseech us to read another real poem, or begin the nightly delaying tactics: “Mommy, you forgot my water.” “Daddy will you sit with us for a few minutes?” “Is tomorrow a skirt day or a dress day?” But we will persevere, put our arms around each other, and start crying before we reach the end.
Because this birthday marks another singular time. These days, when we catch each other’s eye as we dart between some ringing phone and some overboiling pot, when one of our daughters says the most absurd, charming thing, when we hear that lullaby that once drove us batty but now makes us nostalgic, or when one of our arms reaches across the bed in the middle of the night and strokes a shoulder or patch of skin, for the first time in what seems like a very long time, we don’t think only of losing one another. We allow ourselves the flicker of a thought that maybe we have endured the worst. Maybe we’ll get another year. Or maybe many more.
So on what is widely regarded as one of the most dreaded days in America – April 15th – we hope you’ll take a moment and smile at this special milestone for us, be a crutch for someone you know who may be hurting, and reach out an arm to someone you love and mark the simple miracle of another year.
And sometime this spring, when a tree near you is blossoming, please, take a walk for me.
Sunday, February 1st, 2009
Dear Friends and Family,
Relentless torments of snow and ice have battered Brooklyn in recent weeks, leaving the streets and sidewalks a chalky, salty mess and our creative ways of keeping kids occupied while indoors tapped out long ago. But even as winter slogs toward its halfway mark, if you look outside in the late afternoons, you can begin to detect that the light lasts a little longer, hinting that relief is on the way.
There are very few days in one’s life that you know, in advance, are going to be momentous. December 23rd was one of those days for me. I awoke before dawn and arrived at the hospital at 5:45 AM for the beginning of what would be a fifteen-hour surgery to salvage my left leg. An orthopedic fellow arrived to sign my thigh and at 7:30 AM I was wheeled down the longest hallway I had ever seen. (I later determined that the world’s longest hallways are probably all outside surgery rooms, and I learned that this hallway, long even by hospital standards, has been nicknamed “The Green Mile.”)
Inside, the OR was a mix of high-tech television screens; a swarm of nurses and attendants; a man with a large, astronaut-like glass bubble around his head; and a 12-foot long table overflowing with knives, scalpels, and prongs. There was enough equipment to cook a state dinner, though in this case the only thing being carved was me. In the last minutes before the anesthesia kicked in, my surgeon, Dr. John Healey, appeared over my table to tell me that the latest scans of my leg suggested that the tumor had been wiped out by the chemotherapy. “It’s dead,” he said. As he later told my family, “I wanted Bruce to go to sleep with a smile.”
As I drifted into sleep, Dr. Healey went to work, while Linda, my mom, and my brother waited anxiously outside. At 12:15 PM a nurse let them know that Dr. Healey was still resecting the cancerous material from my femur and thigh. At 2:50 PM they got a similar report, and at 4:50 PM another. At 6:10 PM, Linda, Andrew, and my mother were escorted into a room where Dr. Healey joined them five minutes later. “He’s doing fine,” Dr. Healey said. “I’m fine. That says it all.”
In his patient, arresting manner, Dr. Healey spent the next forty-five minutes outlining what he had done. First he removed twenty-two centimeters of my left femur (just shy of nine inches), as well as about a third of my quadricep. The amount of muscle resected was less than he had anticipated, and he was especially pleased that he was able to save a key artery he had expected to remove. “Bruce is going to love this,” Dr. Healey said. “The artery is called the profunda.”
Dr. Healey then installed the specially crafted titanium prosthesis into the gap in my femur, attached the device to the remaining bone, and screwed the entire contraption into place. Though we had expected this prosthesis to mimic the shape of the femur, it’s actually a series of tubes, cubes, rods, and rings that appears more akin to a shock absorber, though without the ability to expand and contract. (My brother thinks it looks more like the handle of a light saber from Star Wars.) Dr. Healey was encouraged that the prosthesis fit snugly into the good parts of my femur and likened the gap to that between a boat and a dock: the closer one is to the other, the easier it is for the healthy bone to make the leap and grow into the prosthesis. Overall, Dr. Healey said he felt emboldened by the positive developments and pushed himself to take even more chances and be even more courageous. Asked if there were any surprises, Dr. Healey said, “Bruce has a very big leg!”
Though Dr. Healey’s work was mostly done, mine was not. While Dr. Healey was briefing my family, the plastic surgeon, Dr. Mehrara, went to work on my lower leg. Dr. Mehrara removed a little more than nine inches of my left fibula, grafted it to my remaining femur, then screwed the fibula into the prosthesis. In order to keep the fibula alive, Dr. Mehrara removed four blood vessels from my calf and relocated them to my thigh. When he told my family about all this at 11:30 PM, he, too, was upbeat. “Good bone; good vessels; no problem,” Dr. Mehrara said. Dr. Healey returned near midnight to provide an exclamation point to this magnum day. “Believe it or not, I’m ecstatic,” he said. As promised, Dr. Healey was the last man standing; as foretold, he was the hero of this war.
And then: The recovery. I woke up the next morning in a fog of narcotics, tubes, drains, and incoherence. I had thirty-one inches of stitches up the side of my left leg and no clue what had happened. Even more confusing, during the time I was on the operating table the doctors had forcibly shut my eyes with what must have been duct tape, and I woke up with a scratched cornea. No one could explain why such a high-tech operation had been marred by this low-tech methodology. An eye doctor arrived that evening – Christmas Eve – to test my sight; he stuck a miniature eye chart about six inches in front of my face. In my state, the whole thing appeared to bounce up and down like a trampoline. “I think you need glasses,” the doctor said, and thrust a monocle in front of my eyes. “I don’t need glasses,” I said desperately, “I don’t need this test.” Then I promptly threw up on him. Unflustered, he declared my scratched cornea the worst he had ever seen and ordered me not to open my right eye for three days!
Within days my sight had improved, I weaned myself off the morphine drip and began to take stock of my body. In effect, I had two different wounds. The first was the thigh, which was grossly swollen, had two drains to reduce the swelling and seventy-five stitches that stretched more than a foot and a half from my hip to my knee. The second was the calf, which had its own drain, was wrapped in a splint to prevent movement, and had thirteen inches of dissolvable stitches. The ortho team was responsible for the upper wound; the plastics team for the lower; and each side strenuously avoided commenting, inspecting, or even looking at the other wound. But they did continuously blame the other team for keeping me in bed. For a time it seemed as if my leg had become the United States before the Civil War – with my thigh the North; my calf the Confederacy; and my knee was the Mason-Dixon line. The frustrating standoff needed Lincoln to restore the Union.
On the seventh day, Dr. Healey (after protesting that he was not as tall as Lincoln) finally broke the stalemate and provided a surprising diagnosis. I had eased past the possible complications of surgery more hastily than they expected and my leg was simply not ready to begin rehabilitation. “I’m afraid you recovered too quickly,” he joked.
Finally on Day Eleven, I was allowed to sit up for the first time. “Your leg will swell; it will fill with blood; and it will turn purple,” Dr. Healey warned. “Your head will throb; you’ll get dizzy; and you’ll faint.” He was right! Over the next 24 hours I slowly made it out of bed, into a wheelchair, and into my new life. On Saturday, January 3rd, twelve days after I arrived, I was finally sent home. It took an ambulance, a fire truck, two crews, a stretcher, and a near overdose of pain killers to get me out of Manhattan, into Brooklyn, up a flight of stairs, and into my bed. The girls came upstairs and swarmed around me. We had reached the end of phase two of our year-long war.
And we did so on a high of positive news. The day before releasing me, Dr. Healey paid an unannounced visit to my hospital room. Linda and I were eating a mushroom and anchovy pizza she had smuggled onto the seventh floor. Dr. Healey had just come from the Tumor Review Board, he said, and had some news. The pathology showed that the chemo had been astonishingly successful, and the kill rate for my tumor was 100 percent. This result substantially increases the chances that the chemo killed the invisible cancers in my blood that have been our primary concern since July and likely improves my overall prospects. The normally reserved Dr. Healey could not contain his enthusiasm. “This is not a small skirmish,” he said. “This is victory in a major battle.” He then reached out and shook my hand.
Even with this burst of momentum, the following weeks proved extremely challenging. Back at home, the pain was intense, the inconvenience enormous, and the progress of regaining my strength and mobility far more tedious than I had feared. My days became consumed with drug regimens, bed pans, sponge baths, physical therapists, and my pitiful attempt at exercises designed to regain even nominal movement in my left leg. The simple act of turning over in bed would often leave me howling; going outside to visit the doctor required three people to assist me, including someone elevating my leg as I bumped down the stairs on my rear end like a toddler, out the door, and down the icy stoop. My orders call for no weight at all on my leg until Valentine’s Day, followed by six weeks of fifty percent weight on my leg, then months of physical rehab to help me learn to walk again.
And to make our lives significantly more complex, ten days after being discharged from the hospital, I began three months of post-operative chemo. Suddenly I layered all the miseries of last fall – nausea, weight loss, low blood counts, and mental anguish – on top of the pain in my leg. I’ve been hospitalized once since that time and on more than one occasion found myself just crying out unexpectedly, “I don’t want to have cancer anymore!”
But, of course, I don’t have cancer anymore. We must live with the threat that it returns at any time, but for now, at least, I am cancer free. The one strategic decision we made last summer was to delay the surgery for half a year in part to tell if my body would respond to the chemo. Boy did that decision pay off. The news from phase one was as good as we could have hoped; phase two, the surgery, also appears to have been a remarkable success. We are now well into phase three, and we do so with momentum and firmly focused on the future.
So how did everyone else bear up? Linda braved this unimaginable ordeal with more grace and good cheer than almost anyone else I can imagine. Our families rallied in extraordinary ways, kept the girls occupied, and spent all hours of the day and night, first at the hospital then at home, moving necessities to within arm’s reach. My mother even sacrificed a few afternoons of vigil to beat me in every single game of gin rummy we played.
On one memorable afternoon five days after the surgery, we brought the girls to the hospital for a visit. I had worried about this occasion for months, eager not to traumatize them. I persuaded the nurses to unhook me from my IV’s, ditched my gown for civilian clothes, covered up my wounds and all the scary equipment with sheets, and welcomed the girls into my bed. We had scripted the event down to the nanosecond. The girls gave me a gift, I gave them one, I read through Curious George Goes to the Hospital, then we whisked them away before they could take in too much information. Tybee was especially excited to meet Dr. Healey near the elevator, and when everyone got outside, Eden announced, “Thank you for taking us to the hospital, Mommy.” Upstairs, I wept like a baby and proud father all at the same time.
With the passage of time, our lives have once more settled into a routine. With such a long lag since my pre-Thanksgiving chemo, my eyebrows and eyelashes returned in force, along with my military buzz cut, and the unwelcome addition of my first-ever five-o’clock shadow. The girls excitedly tracked my leg’s evolution from stitches to scar and have come to relish their late-afternoon ballet performances in our bedroom. (The one mandatory note: tossing pretend flowers for the “grand finale” and pretend candy for the “encore.”) Our little family once more is a unit – hobbled but moving forward.
We fully expect February and March to be challenging months. Linda is headed first to California then later to India; I am surely heading back into the hospital. But I have promised the girls I will begin to walk about more freely by their birthday in mid-April and that my hair will grow back by this summer. On some days, these landmarks even seem close.
Until then, we take comfort that so many of you are taking this journey alongside us and know that even in the face of your own setbacks, standoffs, snowstorms, and heartaches, you’ll take an afternoon with someone you love, think of the many blessings you’ve sent our way, and use our struggles to help you persevere a little more easily through this season of challenges.
And, of course, please take a walk for me.
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.