*
I HAD RETURNED to Boston from Ohio, and to my work at the hospital, when I got a late-night page: Jewel Douglass was back, unable to hold food down again. Her cancer was progressing. She’d made it three and a half months—longer than I’d thought she’d have, but shorter than she’d expected. For a week, the symptoms had mounted: they started with bloating, became waves of crampy abdominal pain, then nausea, and progressed to vomiting. Her oncologist sent her to the hospital. A scan showed her ovarian cancer had multiplied, grown, and partly obstructed her intestine again. Her abdomen had also filled with fluid, a new problem for her. The deposits of tumor had stuffed up her lymphatic system, which serves as a kind of storm drain for the lubricating fluids that the body’s internal linings secrete. When the system is blocked, the fluid has nowhere to go. When that happens above the diaphragm, as it did with Sara Monopoli’s lung cancer, the chest fills up like a ribbed bottle until you have trouble breathing. If the system gets blocked up below the diaphragm, as it did with Douglass, the belly fills up like a rubber ball until you feel as if you will burst.
Walking into Douglass’s hospital room, I’d never have known she was as sick as she was if I hadn’t seen the scan. “Well, look who’s here!” she said, as if I’d just arrived at a cocktail party. “How are you, doctor?”
“I think I’m supposed to ask you that,” I said.
She smiled brightly and pointed around the room. “This is my husband, Arthur, whom you know, and my son, Brett.” She got me grinning. Here it was eleven o’clock at night, she couldn’t hold down an ounce of water, and still she had her lipstick on, her silver hair brushed straight, and she was insisting on making introductions. She wasn’t oblivious to her predicament. She just hated being a patient and the grimness of it all.
I talked to her about what the scan showed. She had no unwillingness to face the facts. But what to do about them was another matter. Like my father’s doctors, the oncologist and I had a menu of options. There was a whole range of new chemotherapy regimens that could be tried to shrink the tumor burden. I had a few surgical options for dealing with her situation, as well. With surgery, I told her, I wouldn’t be able to remove the intestinal blockage, but I might be able to bypass it. I’d either connect an obstructed loop to an unobstructed one or I’d disconnect the bowel above the blockage and give her an ileostomy, which she’d have to live with. I’d also put in a couple drainage catheters—permanent spigots that could be opened to release the fluids from her blocked-up drainage ducts or intestines when necessary. Surgery risked serious complications—wound breakdown, leakage of bowel into her abdomen, infections—but it offered her the only way she could regain her ability to eat. I also told her that we did not have to do either chemo or surgery. We could provide medications to control her pain and nausea and arrange for hospice at home.
The options overwhelmed her. They all sounded terrifying. She didn’t know what to do. I realized, with shame, that I’d reverted to being Dr. Informative—here are the facts and figures; what do you want to do? So I stepped back and asked the questions I’d asked my father: What were her biggest fears and concerns? What goals were most important to her? What trade-offs was she willing to make, and what ones was she not?
Not everyone is able to answer such questions, but she did. She said she wanted to be without pain, nausea, or vomiting. She wanted to eat. Most of all, she wanted to get back on her feet. Her biggest fear was that she wouldn’t be able to live life again and enjoy it—that she wouldn’t be able to return home and be with the people she loved.
As for what trade-offs she was willing to make, what sacrifices she was willing to endure now for the possibility of more time later, “Not a lot,” she said. Her perspective on time was shifting, focusing her on the present and those closest to her. She told me that uppermost in her mind was a wedding that weekend that she was desperate not to miss. “Arthur’s brother is marrying my best friend,” she said. She’d set them up on their first date. Now the wedding was just two days away, on Saturday at 1:00 p.m. “It’s just the best thing,” she said. Her husband was going to be the ring bearer. She was supposed to be a bridesmaid. She was willing to do anything to be there, she said.