13 Jul My Cancer Diary, Volume VII
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,