Carrie was so little, not yet a year and a half, but Jay had already made memories with her too—chasing her down the hall saying, “I’m going to get you!” as Carrie’s peals of laughter ricocheted off the apartment walls. But his favorite trick was catching a sunbeam with the face of his wristwatch, refracting the light and making it jump around on the wall of Carrie’s bedroom.
“Look!” he’d say. “It’s Tinker Bell!”
I DEVOURED BOOKS ABOUT how you help your children deal with sickness and loss. A lot of them told the frantic reader to be as honest and concrete as possible. So whenever Ellie asked me, “Is Daddy going to be okay?” I’d respond by saying, “I really, really hope so. The doctors are doing everything they can.” I didn’t want to overpromise. While Carrie couldn’t understand what was happening, I knew that Ellie was at a very tender stage, when a girl’s relationship with her father is formative, when death seems reversible, when you hate to feel different from your peers.
One book suggested an exercise called “the Worry Cup.” I asked a social worker from CancerCare to facilitate it for Ellie’s class. Twenty 6-year-olds sat cross-legged in a circle on the floor. She placed a cup in the center and gave each child a big plastic “gemstone.” One by one, the girls walked up to the cup, dropped in their gem, and shared what they were worried about: an aging grandma, their dog, parents divorcing, the dark. In Ellie’s case, a sick father. The girls took it so seriously, revealing their deepest fears. Her teacher told me it was the most profound experience she’d ever witnessed during her years in the classroom. I could only hope it made Ellie feel less alone.
I brought her to a therapist. They mostly played Candy Land and checkers, but I wanted her to have a safe space where she could just feel her feelings without worrying that she was upsetting me, a common concern of children with a sick parent. I started seeing someone, too, and discovered my sleepless nights and lack of appetite were the result of something called situational depression. I had no idea this kind of debilitating shock could actually change your brain chemistry. The therapist prescribed Zoloft, which dulled the pain, making my heart feel like it was coated in wax.
One morning on TODAY after I’d interviewed Herbert Benson, a Harvard cardiologist who had popularized the idea of a mind-body connection, I asked him if he would join me in my studio office. I told him about Jay and how unbelievably difficult the situation was. He recommended that I come up with a seven-syllable mantra that I could repeat while breathing deeply every time I started to feel unhinged.
Counting out the syllables on my fingers, I chose God, please heal Thy servant Jay.
While an abiding faith may have eluded me, that mantra was helpful. I’d breathe deeply and say, God, please heal Thy servant Jay…God, please heal Thy servant Jay…God, please heal Thy servant Jay…Then steel myself for whatever was coming next.
34
“Katie’s Private Pain”
JAY WANTED TO GO to Millbrook. Liam Neeson and Natasha Richardson invited us to their house, not far from ours. I wasn’t sure if Jay was going to be up to it, but he badly wanted to resume normal life, so we said yes.
Their house was super-British, impeccably shabby-chic. Along with Liam and Natasha were Natasha’s sister Joely and their legendary mother, Vanessa Redgrave—it felt like an honor to be in their presence. Although my main memory of that afternoon was how brave Jay was. I knew he was worried about his colostomy bag, that it might be visible under his shirt or emitting an odor. But when I looked over at him like a concerned mother, I saw him conversing with Joely as if nothing were wrong. Jay’s MO was to ignore what was happening to him as much as possible. A few weeks later, he was back in Denver for Timothy McVeigh’s trial, colostomy bag and all.
Early on in my research, I discovered something called a hepatic artery infusion pump, a hockey puck–like device that would be implanted southwest of Jay’s navel and filled with chemo; the medicine would then be delivered via the hepatic artery to his liver, where it would attack the tumors. He’d also receive systemic chemo through an IV in his arm every other week. I prayed this one-two punch would shrink the tumors while keeping the microscopic disease circulating throughout his body at bay.
His CEA levels, a measure of how much cancer is in your blood, plummeted, making my spirits soar in inverse proportion. I heard the chemo he was on, 5-FU and leucovorin, had something like a 23 percent response rate, and I couldn’t believe how lucky we were. But the crash came just a few weeks later when his levels started to tick up again. Why didn’t anyone tell me that a response is often short-lived and doesn’t take into account cancer’s sinister ability to outwit its most determined foe?