The Shift
Page 21
One daughter extends her index finger and touches it to mine—the only version of a hug she allows me. The other, with only slight resistance, lets me slide an arm around her waist and squeeze. “Goodnight!” they chorus.
“Do you want me to come up and tuck you in?”
“No.” Sometimes they say yes and I follow them up to their lair on the third floor of our house and then they tell me stories: the plot of a book one of them is reading, or what’s up with Ultimate Frisbee, or this inexplicable thing Mr. So-and-So did in such-and-such class, or how funny Mrs. X is. Sometimes we even have girl talk about a lesson from health class or their surprisingly detailed middle-school sex education program.
Not tonight, though, and I don’t fight it. Much as I hate to admit it I am pretty close to all used up.
My son, at fourteen an official teenager and biologically driven to stay up late, hauls his backpack into the family room. Then he roots around in it like a squirrel trying to find just the right nut from his store.
“Found it!” he says, extracting the piece of paper he needs.
“What is that?”
“Questions for U.S. History.” I don’t know if they’re learning about the Revolutionary War, the Industrial Revolution, or the Underground Railroad.
“What are you studying now?”
“Stuff,” he says, taking the piece of paper over to the computer and logging on to the course website.
“You know you need to sleep, right?”
“Uh-huh.” He’s reading online now.
“Well, OK.” I walk over and give his shoulder a pat. “Good night. Don’t stay up too late.”
“Good night.” he says, eagerly reading. Whatever he’s studying, it has captured his imagination.
I go to brush my teeth and something about the ordinariness of that, the habit of it makes me think of Ray, Irving, and Candace, all pulled out of their regular lives and forced to confront the potentially deadly realities that accompany cancer.
“You going to bed?” It’s my husband, come to check on me.
“Yuppers.”
“You OK?”
I incline my head. “Why?”
“I don’t know—you seem more out of it than you usually are after a shift.”
I breathe in and let it out. “Today made no sense. My one patient I thought was fine wasn’t at all, and my other patient, who I thought would maybe die from his treatment, did fantastically well.”
“Aren’t a lot of days like that? Isn’t that why it’s a hard job?”
“Are they?” Do I always live with this level of uncertainty and have never realized it? “I guess you’re right.” I tell him.
He places his index finger between my eyebrows and barely touches the worry wrinkle that I know has appeared. “Can you sleep?”
“I’ll see,” I tell him.
“ ’Cause I’m gonna stay up for a while . . .”
“That’s fine. I’ll try to sleep.” He nods and leaves, turning out the light. I place my head on the pillow and then get up to look at the clock. It’s 10:30 p.m. and I need to get up at 6:00 a.m. tomorrow. Sheila is God-knows-where in the hospital.
Sheila, Sheila, Sheila.
I rarely fall asleep easily after a shift, especially if I’m working the next one, but now quiescence comes, pushing at the edges of my mind. My breath deepens and I feel the calm of oblivion begin to cover me. I will do this all again tomorrow and then there will be another shift and another and another. To be in the eternal present of illness and unease, never knowing the future. It’s where my patients live so I, ever hopeful, live there with them.
AFTERWORD
Knowing the Future
Peter didn’t finish operating on Sheila until 2 a.m. and he told me her abdomen was full of stool. Shit. She had a belly full of shit. Peter and his team cut out the part of her colon that was dead and connected up the end of her living bowel to an outlet—a hole—in the wall of her abdomen. For the near future, and maybe for the rest of her life, she will defecate into a bag that attaches to the outside of her belly. It’s called a colostomy and while it may sound distasteful or embarrassing, patients adapt. Even more important, they live.
I went down to the surgical ICU a couple times after Sheila’s operation. Once I talked to her sister, the second time her nurse, but never to Sheila, who wasn’t doing well. And then I got sick myself with a sinus infection and bronchitis. When I went back to work I was weak and had a hacking cough you could hear up and down the entire floor.
After a few weeks of dragging through my shifts I finally felt more or less like myself and sought out Sheila. She was on our inpatient surgery floor and I found time late one afternoon to stop by. But she was gone. The nurse said she’d left just a couple hours before—finally discharged after a month in the hospital.
I kept saying “What? She’s gone?”
And Sheila’s nurse kept saying, “It’s really great you came down to see her. Really really great.”
It didn’t feel great but it didn’t feel bad, either. In the end she did all right.
Beth’s daughter made it home from Afghanistan OK, too. Apparently she took the world’s longest shower once she arrived in the U.S. and then cut off her hair, so penetrating had been the Afghani dust. She visited Pittsburgh and went shopping with Beth, sat and talked outside while warding off fall’s chill with their fire pit, got a chance to live without being under threat. “I never thought my daughter would end up a soldier,” Beth told me one day at work, “but that’s who she is.”
Ray, Candace, and Irving all made it out of the hospital cancer-free. Their lives will continue to spool out as they each weave the fabric of their own unique existence.
Irving’s story is the simplest. Whether by nature or as the result of his many troubles, Irving asked little of life and in that he was adequately answered. The group home kept him safe. The rocking chairs on the front porch were comfortable and the voices in his head weren’t too intrusive or demanding. From him I learned that sometimes when we strive less we end up with more of what we actually need.
Ray’s brother’s transplanted stem cells brought Ray back from the underworld. His journey was not as bad as it is for some though certainly rough enough. His skin didn’t slough off, he wasn’t cursed with voluminous black diarrhea, and despite a lifetime of enjoyably heavy drinking, his liver after treatment was none the worse for wear. He did succumb to infections, high fevers, breathing trouble, blood in his urine, but he came out whole.
His goal now, his mantra, is to stay out of the hospital unless he’s critically ill, as defined by him. It’s worked so far. He’s returned to fighting fires. He plays in his band, loves his wife, is an involved father. The basics of life seem ordinary only if you’ve never faced losing them. His youth and health gave him only a slim advantage against his disease. He bet on his life and won.
And Candace. Unkind people might say that Candace sailed through her treatment because she was too mean for even cancer to hurt her. If only it were that easy. If only the right kind of personality could keep cells from duplicating out of control and clogging up veins and arteries and organs, forming tumors that grow their own blood supply and steal food from healthy tissue. If an optimist’s cancer goes into remission we say that’s the power of positive thinking. If it’s someone like Candace we credit her survival to sheer cussedness.
There may be psychology involved, but it’s never just that, and luck plays a big role, too. There’s genetic luck always, sometimes at a level of biochemical processes that science does not yet understand. There’s dumb luck, referring to when the cancer is detected, when treatment begins, and whether there’s a match for transplant if a matched transplant (like Ray’s) is what’s needed. There’s economic luck, too. Does the patient have good insurance that will pay for the best treatment available? Is she wealthy enough to cover a multitude of out-of-pocket costs without breaking the bank? And there’s geographic luck as well. New Yorkers with cancer have m
ore options than do South Dakotans or patients from Wyoming simply because they have a wider pool of nearby doctors and hospitals to choose from.
Candace may have saved her own life with her Clorox wipes and her obsessive hand washing. Evidence tells us that such attention to hygienic detail is relevant to what we euphemistically call “good outcomes,” so it should not be described as pain-in-the-ass behavior but important work done by an “empowered patient,” even though it’s the kind of patient contribution that can make people who work in hospitals uncomfortable.
Despite all our good wishes Dorothy came back to the hospital several months later to die. Do we need the details? In the end she didn’t even know herself much less anyone else. Her husband was there, taciturn, uncomfortably wedged into a too-small chair. Their daughter, whom I’d never met, but who had fielded many an annoyed and anguished phone call from Dorothy, was there, too. She looked like Dorothy with the same squat build except pale where Dorothy was dark. She talked to me about how Dorothy could be stubborn and demanding, and then her voice would start to shake and her eyes would fill with tears and she couldn’t speak at all.
Dorothy didn’t make it but her husband lived on, her daughter, too, and her granddaughter. Like it or not, this is the way life works; these are the terms we’re all given, whether we accept them philosophically or resist with everything we’ve got.
I am sorry to report that after his treatment finished, Mr. Hampton did not go to the rain forest, he did not end his days listening to brightly colored birds and watching delicately winged butterflies. A few weeks after I was last his nurse I got to the hospital and learned he was checked in, too. I didn’t see him—just his son, who had that irresistible smile, even though lines had crept onto his face. Around his eyes small creases gave away his stress and his look had an intensity that wasn’t there before. Mr. Hampton’s room was in the front part of the floor and my patients were in the very back.
“I thought you left,” I called wishfully to Trace as I passed him in the hallway.
“We did, but then we came back,” he told me, keeping his mouth straight and flat. And then I knew. His father had not had a miraculous recovery during his last hospital admission. Whatever happened to make him so much better while he slowly got Rituxan didn’t last, which, sadly, was the more likely course of events for someone his age with his particular disease.
Trace was walking quickly, so I couldn’t get more details then, but later on when I had the chance, I didn’t ask Mr. Hampton’s nurse how he was doing. I finished my shift in ignorance of his real fate and kept myself that way on purpose. In my mind he was living in a tropical paradise, eating freshly caught fish cooked just enough over an open flame. While that shift lasted I let myself believe that once I pushed Mr. Hampton’s rock to the top of the health care hill it stayed there. Not true, I knew, but for those twelve hours I chose hope over hard reality.
Finally, a solid two years later at least, I ran into the owlish intern in my local coffee shop. I didn’t remember his name and I’m pretty sure he didn’t remember mine, and yet we knew each other right away. It turns out that we’re neighbors.
He had become a fellow, not in oncology, and I debated with myself whether to speak up, to tell him about this book, and then I did. I told him he had said something so wise to me, something that shaped my thinking about the entire project: “If we could know the future our jobs would be a lot easier.”
“That was probably something I said half asleep,” he told me, not acting embarrassed or falsely modest, but being scrupulously honest, the way he had been so careful as an intern. He doesn’t remember saying something that changed my life, but I do, and seeing him I felt the import of the entire shift again, for Mr. Hampton and for Sheila, for Candace, Dorothy, and Irving. I felt infinity in the palm of my hand and eternity over the next twelve very busy hours.
Acknowledgments
Thanks to Jill Kneerim, agent, friend, and human being extraordinaire. I’m so glad to have you in my life. Amy Gash, who edited this book, made it so much better, in big ways and small. Working with Amy is like having an extra version of my own brain that always has the right answer.
The nurses, doctors, and patients on the Bone Marrow Transplant floor I write about here deserve much gratitude for being amazing colleagues and people. It was a privilege to work with all of you. Special thanks to people who read drafts of the book: Elizabeth Helsinger, Annie Im, Shannon Riskey, Josh Rubin, and my husband, Arthur Kosowsky. English professor, oncologist, oncology nurse practitioner, surgeon, and spouse. All of you were wonderful and helped tremendously.
Thanks also to Judith for mentioning Blake and providing thoughtful conversation as the book progressed, and to Julia, who always had my back. My editor at The New York Times, Clay Risen, wrote a book while I worked on this one and I really enjoyed discussing the process with him. Bob Miller, now at MacMillan, introduced me to Amy and helped get this project to Algonquin. Elisabeth Scharlatt and the marketing and publishing teams at Algonquin have been superlative throughout.
The nurses I worked with while writing this book charted its course and didn’t mind (too much) when I worked less so I could write more: B. Byers, L. Marty, B. Mason, N. Palmquist, K. Smith, C. Spangler, and T. Reiser. Also L. Hartlein, the aide, and L. Harris, our amazing secretary who did seem able to be two places at once though I’m still not sure how she did it.
Friends, neighbors, and family members asked how the book was going, too many to list here, but know that your interest was always welcome, always supportive.
The character of Ray Mason is based on the life of Doug Weaver and his wife, Kalie Pierce. They both read the manuscript in draft and shared comments with me. Their only wish for the book was that I had named them “Sid and Nancy.”
Families are often thanked last in acknowledgments and mine certainly did its part to bring this book to life. The kids are my inspiration for nursing and for success in writing. My husband never blinked when I decided to return to school to become a nurse. When I started writing about nursing he said full steam ahead. All of you are my everything. Many thanks.
THERESA BROWN, RN, works as a clinical nurse in Pennsylvania and is a leading voice on health care as seen from the nurse’s point of view. Her New York Times columns appear on that paper’s opinion page. During what she calls her “past life” she taught English at Tufts University. She is a commentator in both print and broadcast national media, a regular contributor to CNN.com and the American Journal of Nursing, and the author of the book Critical Care. She is part of the Robert Wood Johnson Foundation’s “The Power of Narrative” project and speaks nationally on nursing, end of life, and health care in America. (Author photo by Ken Weingart Photography.)
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