Worth Fighting For: Love, Loss, and Moving Forward Read online

  Advance Praise for Worth Fighting For

  ”Lisa is one of the most honest people I’ve ever known. It’s one of the big reasons Patrick loved her. Read it and you’ll see what I mean.”

  —WHOOPI GOLDBERG

  ”I loved Patrick Swayze and conducted his last television interview before he died. We were joined by his wife, Lisa. She was soft, tough when she had to be, funny, wise and inspiring. ”

  —BARBARA WALTERS

  WAIT A MINUTE . . .

  . . . THERE.

  I MADE IT TO THE NEXT MOMENT.

  AND THAT’S HOW YOU GET

  THROUGH A BAD MOMENT OF GRIEF.

  YOU DO IT ONE MOMENT AT A TIME.

  —From Worth Fighting For

  LISA NIEMI and PATRICK SWAYZE were married for thirty-four years. They first met as teenagers at his mother’s dance studio—he was older and just a bit cocky; she was the beautiful waif who refused to worship the ground he walked on. Through the years their marriage strained under the pressures that many do, but it was always a uniquely passionate and creative partnership.

  When they first exchanged vows, Lisa promised to be with her husband “till death do us part.” But how many couples stop and think about what that truly means? Worth Fighting For is a remarkably candid look at what losing a partner really entails—how to care for him or her, how to make it through each day without falling into despair, and how to move forward in the second half of your life when the person you spent the first half with is gone.

  For the first time, Lisa Niemi Swayze shares the details of Patrick’s twenty-one-month battle with Stage IV pancreatic cancer, and she describes his last days, when she simply tried to keep him comfortable. She writes with heartbreaking honesty about her grief in the aftermath of Patrick’s death, and she openly discusses the challenges that the years without him have posed.

  While this is an emotionally honest and un-flinching depiction of illness and loss, it is also a hopeful and life-affirming exploration of the power of the human spirit. Lisa shows that no matter how dark the prospect of another day may seem, there are always reserves of strength to call upon. She writes, “I tell you, I am a different person now. One who has been thrown into the fire and forged.” Like The Year of Magical Thinking and A Widow’s Story, this book is both a tribute to a marriage and a celebration of the healing power that each day holds, even in the most difficult of circumstances.

  LISA NIEMI SWAYZE is the coauthor of The Time of My Life, which she wrote with her late husband. In addition to writing, directing, and producing the film One Last Dance in 2004, she has held many film, television, and Broadway roles, and wrote, directed, and starred in the play Without a Word, garnering six Drama Critics Awards. In July 2011, she was honored with the title of Dame and invested in the Royal Order of Francis I for her work on behalf of pancreatic cancer. Before turning to directing and acting, Lisa began her professional life as a dancer. She currently divides her time between Los Angeles and New Mexico.

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  JACKET DESIGN BY LAYWAN KWAN

  JACKET PHOTOGRAPH BY © LANCE STAEDLER/CORBIS OUTLINE

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  AUTHOR PHOTOGRAPH BY GREG GORMAN

  COPYRIGHT © 2012 SIMON & SCHUSTER

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  WORTH

  FIGHTING FOR

  Also by Lisa Niemi Swayze

  The Time of My Life

  (with Patrick Swayze)

  A Division of Simon & Schuster, Inc.

  1230 Avenue of the Americas

  New York, NY 10020

  www.SimonandSchuster.com

  Copyright © 2012 by Troph Productions, Inc.

  All rights reserved, including the right to reproduce this book or portions thereof in any form whatsoever. For information address Atria Books Subsidiary Rights Department, 1230 Avenue of the Americas, New York, NY 10020.

  First Atria Books hardcover edition January 2012

  and colophon are trademarks of Simon & Schuster, Inc.

  Permission to reprint lyrics to “Since You’ve Asked” courtesy of Wildflower Records, a Judy Collins Company (ASCAP)

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  Designed by Dana Sloan

  Library of Congress Cataloging-in-Publication Data

  Niemi, Lisa.

  Worth fighting for: love, loss, and moving forward / by Lisa Niemi Swayze.

  p. cm.

  1. Swayze, Patrick—Health. 2. Pancreas—Cancer—Patients—United

  States—Biography. 3. Niemi, Lisa. 4. Caregivers—United States—Biography.

  5. Motion picture actors and actresses—United States—Biography. I. Title.

  RC280.P25S93 2012

  616.99’4370092—dc23

  [B] 2011042497

  ISBN 978-1-4391-9635-9 (print)

  ISBN 978-1-4391-9638-0 (eBook)

  Dedicated to the one I love

  Gone from my sight, close to my heart

  CONTENTS

  1. Fairy Tale

  2. The Diagnosis

  3. It Ain't Over Till It’s Over

  4. Uncharted Territory

  5. Everybody Finds Out

  6. The Troops Arrive

  7. In God We Trust, All Others Bring Data

  8. Russian Roulette

  9. Embracing the Alligator

  10.The Beast

  11. If You Call Me Captain, I’ll Call You Daddy

  12. Dancing As Fast As We Can

  13. Dark Nights, Graced with Snow

  14. Gimme Something Real

  15. Abraxane—The Breast Cancer Drug

  16. Just Your Daily 911 Emergency

  17. Outrunning the Ambulance Chasers

  18. Rallies Again

  19. And Another Thing

  20. My Secret Weapon

  21. The Last Infection

  22. One More Decision

  23. Home At Last

  24. The Immediate Aftermath

  Epilogue

  Acknowledgments

  List of Illustrations

  Worth

  Fighting For

  Patrick and I are wed, with Father Welch presiding.

  Chapter 1

  FAIRY TALE

  THE MOMENT I reached for my notebook to start working on this book, I was flooded with an emotion that I’ve tried to keep at bay for some time now. It’s a wave of feeling composed of endless tears, reminding me that I haven’t remotely cried enough.

  The emotion that washes over me brings the distant past to an instant present. And the details scream out in my mind and heart: every time I pushed down my feelings, every time I smiled when my world was tumbling down around me, and every time I heard a piece of bad news and reacted positively, laughing with mock bravery when I should have been dissolved in tears.

  There is a high price to be paid for the privilege of caring for your loved one when he’s dying, but it’s one I wouldn’t have traded for anything. I always said that
I’d have plenty of time to cry later. When Patrick first got his diagnosis it looked like he might have only weeks to live. Then it was months. And then, luckily, we passed a year. And we kept going. . . . Twenty-one months is a long time to battle for your loved one against a foe like cancer. It’s a long time to “hold up.” And now, I’ve been spit out on the other side of the fight, alone, trying to figure out how I’m going to go on with my life.

  Hot and cold.

  Right now I’m running hot and cold.

  As I write this in May of 2010, it’s been over six months since I lost Patrick, and right now, at this particular moment, I either despise the bad times he and I had together, or worship the good we had. No in-between.

  So, at this particular moment, I worry how can I talk about us, him, in an objective way. One that gives an accurate, albeit can’t-help-but-be-emotional-here-and-there idea of what really happened, who he really was, who I have been, and who I am now. ’Cause I tell you, I am a different person now. One who has been thrown into the fire and forged. One who got stripped of all the nice things that sheltered me from the world, and from myself.

  It’s been hard living out here in the cold. I look for a life raft anywhere, and there’s none to be found. No usual anchors to ground me. No more comfortable illusions. But this person I am is real, painful in its growing spurt, the growing spurt that’s happened without my husband . . . but real. And because I am real there are possibilities.

  Now, this isn’t the way to start a book, but . . . I guess I’m having an angry day, one of those days that happens sometimes since the loss of my Buddy (“Buddy” was his lifelong nickname). And, yes . . . I guess I am sad.

  I think I was hoping to wrap my experience with him up with a nice little bow. And remember it that way. At arm’s length. So, if I seem a little caustic right now, it’s just my attempt to have an arm’s-length view of the story I’m telling. And unfortunately, I know that my being snarky is an attempt to not feel the loss. Because . . . when I talk about him (as I’m doing here) . . . I miss him so much. So terribly. So completely that I worry how I’m going to get to the next moment.

  Wait a minute . . .

  . . . there.

  I made it to the next moment.

  And that’s how you get through the bad moments of grief. You do it one at a time.

  And now I want to talk about him. About who he was when he was here on this earth. My beautiful man. I want to tell this story before I get too far away from it and forget what the journey of the last couple years was really like. ’Cause we do forget. It’s only real when you experience it. After that, as time goes on, it becomes merely the recounting of a story.

  —

  YOU KNOW, it’s funny because there’s always so much talk about divorce statistics. When you get married you can’t help but be aware that there is an approximately 50 percent chance it will end in divorce. There are data about how many couples divorce in their twenties, their thirties, and so on, how many heterosexual couples, how many homosexual. There are television series starring divorced men and women, books written about divorce and by the divorced, major movies made, let alone all the divorced people you run into in everyday life, right? And then there are the children of divorced parents, the books the children write when they grow up, the movies subsequently made, the kids that are carted off to one parent or another, or even kidnapped. There is so much information out there about what happens when marriages don’t work out.

  But no one ever talks about what happens when marriages do work out.

  What happens when you stay together? If this is something that’s been the source of great discussions, it’s not really been on my radar. The short answer to what happens when marriages work out is that the lucky couple lives happily ever after. That’s the fairy tale. But we’re not living in a fairy tale, are we?

  No one talks about the “till death do us part” that comes at the end of the traditional wedding vows. What it means, what it really means. I think it’s funny now how many people have changed that line to “as long as we both shall live” or “for all the days of our lives.” While I agree that the “death” word is a little gruesome-sounding, the two alternatives are full of loopholes. I mean, one can cherish someone’s memory—after one kicks him out of the house. I knew without a doubt, when things were so terrible between Patrick and me in 2003 that I moved out for a year, that I would unequivocally love him always and to the end of time, but I was still going to divorce his ass if things didn’t change in our relationship. (Luckily they did.) The other wedding vow alternatives also give me a laugh: “for all eternity” (really, you can really promise that?), and one with an even more obvious escape loophole, “through whatever life may bring us.” But hey, it’s honest. No one wants to be stuck in a bad marriage.

  —

  “TILL DEATH do us part.” That’s what Patrick and I said in our vows when we got married. I had already made sure “to honor and obey” was stricken from the record. Somehow I missed “till death do us part.” I was eighteen years old, I knew death existed, but it was still a concept, something far, far in the future. So far that I didn’t have to worry about it.

  We had the greatest priest marry us, Father Welch. Father Welch was a friend of the Swayze family. Patrick’s mom, Patsy, had actually done some musical theater with him back in the day and said that he had a crazy sense of humor. She told us how one day the Father came up to her, “Hey Patsy, I have a great idea for the show,” he enthused, “Let’s have a really elegant lady in a fancy ball gown come on the stage, then when she gets to the chair, she hikes up her dress, sits down like a farmhand, and starts plucking a chicken! Isn’t that great?” I looked at Patrick and deadpanned, “He sounds great.”

  And Father Welch was great. During my interview with him, which I found out was required for a Catholic wedding, I balked at saying yes to the questions about converting to the Catholic religion, raising children, and birth control. He’d wave a hand and write in, “yes,” “yes,” “yes,” saying that all these questions were going to change in a few years anyway so it didn’t matter. I find it hilarious that I was so honest and sincere that it was difficult for me to let him put in the “yes” answers, and yet, I didn’t once mention that I didn’t really believe in the institution of marriage, and furthermore, fully expected this one to end up as one of the divorce statistics. And that I was okay with that.

  The whole idea of marriage had come about in an abrupt way. It wasn’t like Patrick and I had talked about marriage. We had talked about the future, though mostly in terms of what we wanted to do as dancers, where we wanted to dance, and with whom. I just wanted to dance. Patrick wanted to dance with me. And it made me nervous.

  We had been living together in our tiny, one-bedroom brownstone apartment with dark yellow-gold walls in New York City for about nine months. I had just returned from doing a dance performance and visiting my family in Houston for a few days, where I had a conversation with my very liberal, open-minded mother in which she raised a surprisingly conservative point, and said, “You know . . . without the commitment of marriage, all you and Buddy are doing is ‘playing house.’” Yeah, and . . . ? Back in New York, I made the mistake of relaying this exchange to Patrick. He just kind of . . . stopped for a moment. Three days later, we were in the middle of a tickling fight on our futon couch when he paused, his arms around me.

  “What?” I asked curiously.

  His face flushed. “Why don’t we do it? Why don’t we get married?”

  I froze. And tried to buy time, clumsily attempting to negotiate a lengthy engagement, “Yeeahh, we could do that . . . we could get married . . .”

  I had left home only nine months before. I wasn’t ready to move straight from there into another home. I had places to go, people to see, things to do! I wanted to dance! I didn’t even believe in marriage to begin with, although I planned to revisit my stance on that subject in another twelve years or so when I reached thirty.

&nbs
p; “When?” he was warming up to the idea, “When do you think we should do it?” He was not only warming up to the idea, he wanted to close the deal right then and there.

  “Uhm, how about . . . in the fall of next year?” That was a year and a half away. I figured I’d have plenty of time to figure a way out by then.

  His face fell. And he began to look mortally wounded.

  “Don’t you think that would work?” I defended. “Why? Why . . .” I softened, “What were you thinking?” Never dreaming that he would say . . .

  “I think if we’re going to do it, we should just do it right away. Like next month,” he said with conviction. “What do you think?” And he nervously looked me straight in the eye while he waited for my reaction.

  Guess who won?

  —

  WE WERE so different from each other, and yet, so much alike. I was fourteen years old when I first laid eyes on him at Houston Music Theater when his mom’s dance school and company merged with the theater group I was working with. How could you not notice him? He was tan, buff, and had a dazzling smile. And his reputation for being a Casanova and having a big ego had preceded him. This wasn’t helped by the fact that my first contact with him came when we passed each other coming in and out of the theater, and he reached over and pinched me on the butt. “Hey there, cutie!” he said in a both friendly and mischievous tone. “Oh, brother.” I rolled my eyes as he passed me.

  Although I had a rich and deep internal life, on the outside I was painfully shy and had excruciating difficulty being around people. I just didn’t know how to talk to them, not the slightest idea. I hate using that word “shy,” because it indicates that I was always that way. I wasn’t when I was in a situation I was familiar with. I always marveled how I could bust it up plenty loud and good with my brothers at home, but at school, never utter a word or raise my head or hand. I was so socially withdrawn that I would plot and plan how I was going to walk from point A to point B across a room in public long before I actually did so. Honestly, I wouldn’t make a move until I’d figured out how to do it and be as invisible as possible lest I draw attention and have someone look at me, or say something. I wasn’t just a wallflower; I was an expert, practiced wallflower. Not such an easy thing to master when you’re skinny and strikingly fair, with a shock of unusually white blonde hair. And yet, this shy girl is the same girl who opened up on stage like gangbusters, who felt she could reach out and touch the deepest parts of people.