Unexpected connections (book excerpt: The Light Within)

Book Excerpt
A peek inside what's new on the shelves on topics pertinent to physicians.

In this excerpt, Dr. Ramondetta, an associate professor of gynecologic oncology at the University of Texas MD Anderson Cancer Center, grapples with Deborah Rose Sill's grim diagnosis.

The results of Deb's biopsy came in within twenty-four hours, and our worst fears were confirmed: The cancer had returned. I knew the results before Deb did, but it wasn't my job to share the findings with her. That was up to her principal physicians, Dr. Bouquet or Dr. Darling. By the time I saw her the following day, they'd already broken the news.

"How long do you think I have?" she asked me.

"I really don't know," I told her.

"That's what they said," she remarked vaguely.

She began to talk about her friend Fran Lantz, who had died of ovarian cancer, and who had used total parenteral nutrition to stay alive for the sake of her teenaged child. Deb did not want to go that route. For her, life was very much about quality. With total parenteral nutrition, a patient forgoes food and receives all nutrition by infusion into a vein.

"I'm going to have a stash of drugs squirreled away in the house," she said, repeating what she'd told me earlier. "There's going to come a point where the quality of my life will become unbearable, and at that stage it won't make sense to go on living."

I didn't want to believe it would come to that. She was my friend, and I wasn't yet resigned to her death. As far as I was concerned, the stash was Deb's security blanket. One of the greatest fears for cancer patients is that they will be in tremendous pain, and that their pain will be ignored.

"You're worried about pain?"

"Yes," she said. "Very worried."

"None of us will let you be in pain," I said.

"Promise?"

"Promise."

There were other kinds of pain, of course. Anxiety, fear, and spiritual distress, for example, can produce tremendous physical pain. That's why I talk to my patients, and even try to enlist the help of their friends and families to get them to open up about their fears. Sometimes I get help from chaplains and rabbis, too, but Deb didn't need any of this. She had her family, she had her doctors, and she had me.

As I noted earlier, Deb was being cared for by two medical oncologists, one surgical gynecologic oncologist, one bone marrow specialist, and me. I would be lying if I didn't admit that sometimes I was confused about my role. I was her friend, her doctor, her adviser, and more recently, given the book, her co-author. But friend remained at the top of the list.

"I'm not going to prescribe any narcotics," I said. "I'm not going to help you build your 'stash,' as you call it. But when the time comes, I promise I will not let you suffer."

"Is that my friend talking, or my doctor?" she asked.

"It's a good question," I said. "I've been wondering about that myself."

Deb and I had found each other through cancer, and had become intensely close over the years, and now that we were grappling with her mortality, our friendship was turning into an essentially spiritual relationship. I had other patients who had survived well beyond expectations, and it occurred to me that I'd developed increasingly close bonds with them, too. We had the luxury of time -- time to talk and to trust and to grow ever closer -- but our time was limited, and we knew it. These relationships were intense by definition. If a woman is dying at forty, she has to cram the rest of her natural life -- the life that was taken from her -- into the little time that's left. Think about that for a moment. It doesn't get much more intense.

I began to notice that some of my fellow oncologists were also being drawn -- sometimes against their will -- into similarly deep and spiritual relationships. Our patients were living longer and we had time to get to know them as people, not simply as patients. What's more, there was a noticeable power shift in many of these relationships. Where once they had been largely paternalistic, with the doctors making most of the decisions, many of these patients -- especially the well-informed ones -- were participating actively and aggressively in all of the decisions related to their treatment.

"You know, Lois," Deb told me, "if things go well in the course of one's cancer treatment, one has a long and intense relationship with one's oncologist. If they don't, one has a short and intense relationship with one's oncologist."

She was absolutely right. I looked at her, lying there, knowing she was dying, but I wouldn't allow myself to cry. There would be plenty of time for that later. I was going to move forward -- I would be downright clinical about this.

~~~

This second excerpt shows the impact Sills had on Dr. Ramondetta and looks at the helplessness the doctor felt about the cancer that claimed Sills' life.

I made the four-hour drive north to Santa Barbara, listening to a Beatles marathon on the radio and crying. I kept thinking of how lucky I was to know Deb, and how the people who didn't know her would be the poorer for it. She was such a giving person. So full of life. So interested in her fellow human beings. I had never met anyone with such a knack for seeing others. Whether it was a nurse, or a hospital groundskeeper, or a waiter in a restaurant -- Deb was intensely curious about who they were and what made them tick. Most of us are lost in that bottomless black hole of self-absorption, but not Deb -- Deb's curiosity about her fellow human beings was insatiable. What's more, she had a habit of trying to find the best in everyone, and when she found it she dug deep. Deb was always looking for the qualities that defined people, that made each of us different, and she was intensely curious about how those qualities had developed in that particular person, and how they had affected the way they saw the world. She was interested in the forces that shaped each human life, the qualities that made each of us unique.

This was a form of religion, I guess. Who are we? How do we become the people we become? What does it all add up to? And what happens to us when we're gone?

I stood next to the bed and reached for her hand. She barely had the strength to squeeze it. In a voice that was barely a notch above a whisper, she said, "I didn't even get to sixty."

She was fifty-six years old. It seemed horribly unfair.

"The only reason I'm still alive is because the spirit wants to live," she said. "It's not really me, anymore. Not the real me, anyway."

She reached for the remote and turned on the TV. We watched an episode of Law and Order. "You know why I love this show?" she asked.

"Why?"

"Because I always know how it's going to end. There's no uncertainty. The bad guys get caught."

She was asleep within minutes, and I stayed in the bedroom with her, with my laptop, working away on our book. If I did nothing else, I would finish the book while she was still alive. In every other respect, and especially as a physician, I felt completely helpless. Sometimes, we doctors find it hard to believe that we can't help. We think there must be something we can do, and that we're simply not looking hard enough, not thinking clearly enough.

Deb grew progressively weaker. She was often cold and had to be covered with mountains of blankets. And all she ate was a little yogurt with blueberries. Still, she never failed to put on her earrings and a touch of lipstick. "It's not vanity," she told me. "I think it's the least I can do. You're the ones who have to look at me."

A compliment at that point would have been dishonest, and I couldn't be dishonest with her. I could have told her she looked pretty, I imagine, but she was literally withering away. Her face was tired, malnourished; her beauty had faded.

"Let's work on the book," she said.

From the book "THE LIGHT WITHIN: The Extraordinary Friendship of a Doctor and Patient Brought Together by Cancer," by Lois M. Ramondetta, MD, and Deborah Rose Sills. Copyright © 2008 by Lois Ramondetta and Giles Gunn. Reprinted by permission of William Morrow, an Imprint of HarperCollins Publishers. $24.95.

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