When Lisa Niemi first exchanged vows with Patrick Swayze, she 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 both a candid tribute to a marriage and a celebration of the healing power that each day holds, even in the most difficult of circumstances. Lisa 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 his death and openly discusses the challenges that the years without him have posed. Her story is an emotionally honest and unflinching depiction of loss, but it is also a hopeful and life-affirming exploration of the power of the human spirit. “I tell you, I am a different person now,” she writes, “one who has been thrown into the fire and forged.”
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Worth Fighting For
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.
“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.
Buddy, on the other hand, was gregarious. He carried himself shoulders back, head high, with the confidence of the popular guy, and one who was very comfortable with that position. Me, I was hanging with the longhaired, misfit, doper crowd. It was natural that any friends I did have were people who also didn’t fit in. And we hid behind our cigarettes, pot, and differentness. I wasn’t so noticed with them and it was okay to be weird. In contrast, Buddy looked like a cliché of the All-American, clean-cut, clean-living star athlete of school and home. He was almost . . . too perfect. And it wasn’t that I hated that about him, I was never quick to judge people. If anything, I gave them too much latitude. It’s just what I observed. If anything, I felt a little sorry for him. For all his being so perfect looking, and perhaps because of it, he didn’t fit in either.
One thing about being so quiet is that while everyone else is busy doing something or talking—you are watching. Really watching (beware the ones who are quiet!). You can see things that might not be apparent to others. Being painfully shy, I was always quick to see others’ pain, although I never let on that’s what I saw. Behind Buddy’s quick grin, I saw nervousness. Behind his bravado, I saw a pain I thought that even he didn’t really know about (that’s my fourteen-year-old self speaking). Behind his awkward teasing and small talk, I sensed a deep insecurity and need. One thing I knew for certain . . .
This guy wasn’t my type.
And later, when I shifted to dancing full-time with his mom, he asked me out.
Of course I accepted.
OUR FIRST dates were not very successful . . . to put it mildly. They consisted mostly of him chatting on to fill every possible silence and me barely talking at all as we cruised along in his bright yellow Opel GT. He loved that car!
A sample of our conversation:
Patrick: “My first car, I built from the ground up, I got most of the parts from my uncle’s automotive shop, he had gotten this big shipment of used Dune Buggies for old-folks homes and took them apart for parts, so I got to get whatever I needed from him, of course my Dad came in and helped me with some things. And then there was football practice, which was taking most of my time after school, and then I had to hustle to dance class so there wasn’t a lot of time to make extra money, and then there was a paper route I threw from three to four o’clock in the morning. But I manage to get to dance class every chance I get. So, you are looking to go to New York and dance?
Patrick: “That’s good ’cause you really have the talent. No, really, I wouldn’t just say that. You know Bob Joffrey, who I’ve known all my life, says that if I really work on my feet, you know how you can get that little arch just above the metatarsal. It’s the hardest thing, and then getting the foot to do that little wing. . . . It’s not so easy for a guy to get, but my feet are looking pretty good . . .”
And on and on. It was strange because the dates were so uncomfortable and yet . . . not uncomfortable at all. Of course I’d been told that all the girls wanted him and he could have his pick (so they said, and it was probably true). But he didn’t intimidate me, mostly because 1) I was not looking to lay any claim to him, 2) I had his number. I knew he appeared to be a flirt and to have a big ego. But I knew what he felt like inside. And though our first few dates were pretty terrible, there was a powerful attraction between us, and we kept coming back, even though we still didn’t trust each other. I was still wary of his self-centered, Casanova reputation, and he was still wary of my “bad girl” doper rep. And then, one day that mistrust melted away. It actually happened when he wrote me a letter from New York telling me that he thought he had fallen in love with a fellow dancer at Harkness Ballet. My reaction surprised me—I was happy for him. I discovered that I really cared about him. And the depth of my feeling surprised me.
You know, some people talk about how they knew when they met the love of their life. I didn’t know that Patrick was going to be the love of my life. I wouldn’t have even dared to suppose that. But I did have a premonition, a strong sense that there was destiny between us. Maybe it was that we’d have a more meaningful relationship before we parted, or . . . I didn’t know exactly what. But I knew there was going to be something. And I was confident in it. From the beginning, even while I still had my guard up, I saw something deep inside him that I thought was pure gold. It belied all the things that were said about him and who he was, it belied even the things he said about himself. And then one night, right before our relationship made a turn and we started to trust, I had a dream about him. It was like a moving picture, moving, but still life. He was seated on something akin to a windsurfer board, a small sailboat floating on a big, beautiful, blue lake . . . bright, clear, golden light shining on him . . . a breeze gently blowing through his hair. And he was sitting naked, feet folded up in front on him. And though he was beautiful, it wasn’t that it was sexy . . . he was pure. And he smiled at me with one of the most beatific smiles I’ve ever seen.
I woke up with wide eyes! Now, I’ve been writing down and paying attention to my dreams since I was twelve years old. I was shocked at this vision of him in my dream. I knew then, without a shred of doubt, that I liked him. I really, really liked him.
So, when he asked me to marry him, when for some crazy reason I was still holding on to the idea that he “wasn’t my type,” that, and a few other things that concerned me about committing to him for the rest of my life . . . I was not prepared to let him go. And I didn’t feel I could say “no” without losing the relationship, or hurting him badly.
“Oh, well,” I thought, “I need to go through with this. We can always get divorced later.”
And on June 12, 1975, as I stepped out into my family’s small backyard in Houston, Texas, the group of family and friends standing scattered in the grass, Father Welch standing calmly center with his Bible, my father proudly offering his arm to me at the back door to lead me out, out to face a fuzzy Patrick, Patrick standing stiff and still in his light blue suit, fuzzy not only because he seemed somewhat paralyzed, but as I grasped his hands and we held tight, tears had pushed their way into my eyes . . . and they started to stream down my cheeks.
AND WE were off to the races! From being dancers, we went to working in the theater, from theater we moved to Los Angeles for film. There were heartbreaks and struggles, along with adventure, enthusiasm, and sweet little victories. It was tough at times, but we were resilient, and we always made it somehow. We were living and pursuing our dreams.
It was during this time that I started to learn how to talk to people. I started with things as simple as saying to a grocery cashier, “It’s a nice day today.” Then I graduated to more challenging conversation. Practice, practice, practice.
How ironic is it that this quiet, introspective girl got thrown into the public eye on a level that few people have to deal with? When Patrick first did the miniseries North and South and then hit it big with Dirty Dancing, the lid blew off our lives and there were not only multitudes of people and decisions to make, but he and I were thrown into a high-profile world that included doing press and on-camera interviews for national and international audiences. Gimme a break! Patrick was always pulling me from the shadows that I moved in so well. Actually, early on, before he had made any kind of name for himself, his first manager suggested that he not even mention he was married, to which Patrick emphatically and without hesitation said, “No way. I’m proud to be married.” Not many other ambitious actors would have made that choice. He always insisted that I be a part of everything he did and included me in every interview possible. He wanted people to see me. We were a team. I learned how to give an interview with the best of them (Patrick being my main example!).
At the same time, the fact that I was so quiet and guarded came in handy in this new, highly public life. A life in which there were many things you did not tell. To anyone. Ever. Not sharing your deepest thoughts, your painful problems, or any unhappiness was considered an asset to a public image, but it reinforced the worst of my lonely struggles and feelings that I was always on my own to sink or swim.
Along with success comes another set of problems. I’ve always said, “If you really want to test someone, give them what they really want.” Getting want you want removes the idea that once you get it, everything will be great. Try living with that. Lots of people can’t deal with it. And as down-to-earth a person as Patrick could be, he got lost in that conundrum more than a few times. Added to the fact that he spiraled downward when his father died, taking on the booze that his dad had imbibed for many years. And alcohol and he did not mix very well.
So many challenges. And so many adventures. With our new lives we got to travel, do incredible things, enjoy fascinating work, have access to situations people only dream about and be crazy in love with each other as we learned, grew, and gained valuable experience. We also fought, pushed ourselves beyond stress, and tested the limits of our relationship. From Patrick I learned bravery, knowing that nothing is impossible, and the startling ability to push beyond the boundaries of what you think your limits are.
I don’t know how—but we always hung in there together. Close as close could be. A friend once described us as symbiotic twins, something I thought possibly was not a compliment. But through thick and thin we stayed fast, which only made it all the more painful when in 2003 I moved out after his drinking had escalated to a breaking point. I know I had reached mine. It had been a good ten years in coming, and I felt I was breaking in half. It had gotten to the point where I knew something had to stop or someone was going to die. It was that terrible. I was gone a year. And after he stopped drinking, and there was some hope that things could be manageable again, I moved back in.
But our reunion was not going to solve all of our problems. And little by little, my faith in the relationship crumbled further into despair. I’d find myself waking up in the middle of the night crying, not stopping for hours. I had given up on the hope that Patrick’s and my relationship could turn around and truly be what it was meant to be, and I felt like I was witnessing the living death of our marriage at that point.
My friend Lynne, who had been there for me in some of the hardest times, always reminded me that miracles could happen. I didn’t believe that was possible with Patrick and me. There was too much history. Sometimes you just go too far down that road of destruction. There ends up being too much hurt, you become too entrenched in your positions to ever break free. Again, for the final time, I was ready to leave, for good. I hadn’t moved my stuff out yet, but in my heart, the door had closed and I was already gone. And then . . .
A miracle happened.
A lady psychic came to visit us—yes, that’s right, a lady psychic—and it was the catalyst that turned our relationship around overnight. Whether this woman was truly psychic or just incredibly intuitive, or both, she saw what was going on and, unlike many, wasn’t afraid to say what she saw and not back down. Mercilessly, but with care, she wasn’t going to let us not see. And what happened, I wouldn’t have believed was possible if I hadn’t been through it myself. It was as if both of us were ready to walk through that door together at the same time. It was nothing short of magic. I felt like for the first time in years Patrick saw me, really saw who I was, who he fell in love with. And though I was still afraid, I still wanted him more than anything on the planet. We saw that. And we opened ourselves to each other and took that leap together. Hand in hand.
The change was profound. And when a few weeks later, we broke into a terrible argument, Patrick stopped in the middle of the argument and held me tight, tears coming into his eyes, and he said, “I will do anything. I never want us to go back to the way it was.” My heart melted, and I squeezed him back. We were finally learning what to do, to have what we wanted so much. And every time he showed me love, every time he was kind to me, every time he smiled at me, it erased the parts of our history I thought could never heal. Crazy, huh? You can heal with love. Just sometimes too much stuff gets in the way of that love.
When we were first together we had always joked about how a relationship was not supposed to be easy, that it wasn’t like we were Prince Charming and Snow White. All “roses and daffodils,” as we said. And God knows it had been work. But here we both were, over three decades later, and we had just witnessed a fairy tale come true. It took over thirty years, but it was better than roses and daffodils. He had me. And I had something even better than the man of my dreams.
Then . . .
NEW YEAR’S 2008, we were visiting friends in Aspen and raised a glass of champagne for a toast over dinner. Patrick grimaced a little when he swallowed it down, but he didn’t say anything. Throughout our trip and our stay at our ranch in New Mexico, he was hitting the Tums pretty regularly. But I didn’t worry; he’d always had a sensitive digestive system.
Back in Los Angeles a week later, he came to me on a Sunday afternoon, “Do my eyes look yellow to you?” He hadn’t been feeling well and had bad indigestion. I had also noticed he had eaten little to nothing in the last two or three days. I peered into his eyes curiously, moved him into better light to make sure. “Yes, yes, they do look yellow.” I called Celinda, our housekeeper for over twenty years, over to confirm, “Yes. Yellow.” She nodded in her definitive way. I looked at him . . . “Let’s get you in to the doctor first thing tomorrow,” but Patrick assured me that there was no rush. I’m not an alarmist, and wasn’t trying to be one now, but I shook my head, “No . . . better to go. This is not normal. Let’s get you in.” So what, I thought. We get it checked out and that’ll be that.
THERE’S A word in the Finnish language that the Finns hold in very high regard—“Sisu.” I’ve known of this word since I was a youngster, and being of Finnish heritage, I was told that this “Sisu” was in my blood and a part of my DNA. My family’s roots on both sides are Finnish, and I am the second generation born in the United States. I always thought that my family was a little strange. That is, until the first time I visited Finland. Everyone there was just like my family! I realized that we weren’t crazy; we were just a Finnish family living in Texas, U.S.A. Hell yeah! And while I learned from Patrick how to be braver and to believe nothing was impossible, I had also learned how to be tougher than the rest as I grew up as the only girl with five strapping brothers (and no, I was not spoiled being the only girl). But that toughness and pluck was nothing compared to the “Sisu” I had been always been told was my birthright.
“Sisu” basically means courage. But it’s more than just having guts. Loosely translated into English it means strength of will, determination, perseverance, and acting rationally in the face of adversity. For example: a riding student falls off a horse, she doesn’t cry and gets back on the horse. If she falls again, and keeps getting back on, she is showing Sisu. Several Finnish athletes have shown their Sisu, like Lasse Virén, who in the Munich Olympics fell during the 10,000-meter running event, but got up and won the event, breaking the world record. In 1939, a powerful Russia invaded Finland with three times as many soldiers, thirty times as many aircraft, and one hundred times as many tanks. By the time it was over, the Russians had suffered heavy losses and succeeded in taking only 11 percent of Finland’s territory. Unbelievable.
Sisu is not a momentary courage, but a particular brand of doggedness, one that is capable of facing down death itself. Knowing that you have lost and still continuing to fight . . . that shows Sisu.
The next two years would test my Sisu beyond anything I had ever imagined.
Table of Contents
1 Fairy Tale 1
2 The Diagnosis 17
3 It Ain't Over Till It's Over 29
4 Uncharted Territory 41
5 Everybody Finds Out 59
6 The Troops Arrive 71
7 In God We Trust, All Others Bring Data 79
8 Russian Roulette 93
9 Embracing the Alligator 101
10 The Beast 115
11 If You Call Me Captain, I'll Call You Daddy 131
12 Dancing As Fast As We Can 149
13 Dark Nights, Graced with Snow 167
14 Gimme Something Real 179
15 Abraxane-The Breast Cancer Drug 193
16 Just Your Daily 911 Emergency 201
17 Outrunning the Ambulance Chasers 215
18 Rallies Again 225
19 And Another Thing 237
20 My Secret Weapon 251
21 The Last Infection 267
22 One More Decision 281
23 Home At Last 287
24 The Immediate Aftermath 301
List of Illustrations 323