I had a thick spiral notebook with a tough red plastic jacket. I called it my cancer bible. The inside covers were taped full of business cards from Elliot’s growing team of doctors. Keeping scrupulous records gave me a purpose, a sense that I was helping and the thin illusion of influence. The first fifty or so pages showed my hasty but meticulous notes on Elliot’s symptoms, doctors’ visits and drugs’ side effects. When he started daily chemo pills plus weekly infusions in the city, with one week off every month, I scribbled down all the information, even the nurse’s tip about a cheap garage.
All that detail came from the very start of our ordeal. As time went on, I just used the red book as a folder and shoved dozens of accumulating handouts into the back—advice on what to feed a patient who can no longer digest fat, a “pain management instruction sheet,” and so on.
There was also a pale orange card about “Sexuality, Fertility and Intimacy” during treatment. We didn’t need that one. Elliot had plenty of passion for what we referred to as “marital activities,” using the phrase of a shy doctor who had granted us permission to “resume” them after Elliot healed from an invasive procedure.
“Shall we resume some marital activities?” one of us would whisper with a mischievous touch and a grin. Elliot said such pleasures were the best distraction from his daily discomforts and fears and phone hassles over prescriptions. They made him feel alive. Our bed was the one place he could come close to feeling carefree again. I tried to be a nurse by day and a vixen by night, and his lavish attentions made me feel safe and treasured. I have few regrets about how we managed during his illness but this is one; sometimes I was just too exhausted. If only I could have those nights back. What I would give for that chance.
My cancer bible also held artifacts from the parallel track of normal family life—a calendar for concerts at the Cloisters, a random to-do list (“plumber, birthday present, take Devon to riding on Friday”), and phone numbers I needed for work.
People often imagine that if they get hit by a terminal diagnosis they’d quit their jobs and fly to Tahiti. That’s not usually the case. Like many patients, Elliot had to keep working for the paycheck and health insurance. More than that, work gave him a sense of identity and purpose. He didn’t want to sit on the sidelines, he wanted to contribute. Quitting would mean admitting he didn’t have much time left. Ironic, how the work he once grumbled about became so precious. Our jobs became lifelines. Our offices gave us diversions, time with friends and news to talk about that had nothing to do with doctors. Work preserved, as much as possible, some of the most basic rhythms of ordinary life. It was a blessing that our employers were flexible about our schedules, and that Elliot had an editing job he could do from home when need be.
For some reason, perhaps the satisfaction of private vengeance, my red bible also had a page I ripped out of a waiting room magazine. The article was titled “How Cancer Made a Mother Out of Me.” The author veered from self-pity to celebration as she beat breast cancer and gloated about the wonderful lessons learned; I resented her weepy tale of triumph, knowing that Elliot almost certainly wouldn’t be a winner.
One particularly in-your-face quotation caught my eye. It was in her doctor’s riff about doing a breast cancer walk-a-thon. “‘They couldn’t have a pancreatic cancer walk,’ he said. ‘Almost no one survives pancreatic cancer.’”
My reaction screamed across the author’s smiling head shot.
“BITCH!” I had scrawled in block letters over her bright green eyes, her shiny coral lipstick, her careful blond highlights. “FUCK YOU!”
That’s how I vented my fury. On secret pieces of paper stashed in special hiding places. I didn’t want anyone to see how hopeless I really felt. I had always told Elliot everything, but this I couldn’t share. I was afraid if he saw my despair, he would give up. I wanted him to fight as hard as he could.
I needed him.
Every day brought new reminders. Once I drove to baseball camp to pick up Alex. As he opened the car door and buckled his seat belt, he seemed to be choking back tears.
“What’s wrong, Honey?”
“Nothing.”
“Are you sure?”
He was silent as we drove home. A few hours later, Alex spoke up.
“When they were picking teams, I got picked fifteenth out of eighteen.”
“Oh, Honey, I’m so sorry.” I couldn’t think of anything else to say. I’m not a sports person. It seemed there was no way to spin this so it wouldn’t hurt quite so much. This was a big part of a little boy’s world, and I felt totally inept. It killed me to see Alex so despondent.
“Don’t worry about it kiddo,” Elliot said when he heard about it later. “It happens to everybody at some point. Mike Piazza got picked last in the sixty-second round of the 1988 amateur draft. More than a thousand guys got picked before him and he got drafted only as a favor because his dad knew somebody.”
Alex’s face lit up. Of course Elliot knew exactly what to say.
How was I going to raise my son without him?