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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.