When our time is limited and we are uncertain about how best to serve our priorities, we are forced to deal with the fact that both the experiencing self and the remembering self matter. We do not want to endure long pain and short pleasure. Yet certain pleasures can make enduring suffering worthwhile. The peaks are important, and so is the ending.
Jewel Douglass didn’t know if she was willing to face the suffering that surgery might inflict on her and feared being left worse off. “I don’t want to take risky chances,” she said, and by that, I realized, she meant that she didn’t want to take a high-stakes gamble on how her story would turn out. On the one hand, there was so much she still hoped for, however seemingly mundane. That very week, she’d gone to church, driven to the store, made family dinner, watched a television show with Arthur, had her grandson come to her for advice, and made wedding plans with dear friends. If she could be allowed to have even a little of that—if she could be freed from what her tumor was doing to her to enjoy just a few more such experiences with the people she loved—she would be willing to endure a lot. On the other hand, she didn’t want to chance a result even worse than the one she already faced with her intestines cinched shut and fluid filling her abdomen like a dripping faucet. It seemed as if there were no way forward. But as we talked that Saturday morning in her hospital room, with her family around her and the operating room standing by downstairs, I came to understand she was telling me everything I needed to know.
We should go to surgery, I told her, but with the directions she’d just spelled out—to do what I could to enable her to return home to her family while not taking risky chances. I’d put in a small laparoscope. I’d look around. And I’d attempt to unblock her intestine only if I saw that I could do it fairly easily. If it looked difficult and risky, then I’d just put in tubes to drain her backed-up pipes. I’d aim to do what might have sounded like a contradiction in terms: a palliative operation, an operation whose overriding priority, whatever the violence and risks inherent, was to do only what was likely to make her feel better immediately.
She remained quiet, thinking.
Her daughter took her hand. “We should do this, Mom,” she said.
“Okay,” Douglass said. “But no risky chances.”
“No risky chances,” I said.
When she was asleep under anesthesia, I made a half-inch incision above her belly button. It let out a gush of thin, blood-tinged fluid. I slipped my gloved finger inside to feel for space to insert the fiberoptic scope. But a hard loop of tumor-caked bowel blocked the entry. I wasn’t even going to be able to put in a camera. I had the resident take the knife and extend the incision upward until it was large enough to see in directly and get a hand inside. At the bottom of the hole, I saw a free loop of distended bowel—it looked like an overinflated pink inner tube—that I thought we might be able to pull up to the skin and make into an ileostomy so she could eat again. But it remained tethered by tumor, and as we tried to chip it free it became evident that we were risking creating holes we’d never be able to repair. Leakage inside the abdomen would be a calamity. So we stopped. Her aims for us were clear. No risky chances. We shifted focus and put in two long, plastic drainage tubes. One we inserted directly into her stomach in order to empty the contents backed up there; the other we laid in the open abdominal cavity to empty the fluid outside her gut. Then we closed up, and we were done.
I told her family we weren’t able to help her eat again, and when Douglass woke up I told her, as well. Her daughter had tears. Her husband thanked us for trying. Douglass tried to put a brave face on it.
“I was never obsessed with food anyway,” she said.
The tubes relieved her nausea and abdominal pain greatly—“90 percent,” she said. The nurses taught her how to open the gastric tube into a bag when she felt sick and the abdominal tube when her belly felt too tight. We told her she could drink whatever she wanted and even eat soft food for the taste. Three days after surgery she went home with hospice to look after her. Before she left, her oncologist and the oncology nurse practitioner saw her. Douglass asked them how long they thought she had.
“They both filled up with tears,” she told me. “It was kind of my answer.”
A few days after Douglass left the hospital, she and her family allowed me to stop by her home after work. She answered the door herself, wearing a robe because of the tubes and apologizing for it. We sat in her living room, and I asked how she was doing.