Worth Fighting For: Love, Loss, and Moving Forward

by Lisa Niemi Swayze; Lisa Niemi

  You know, Patrick, who was very blasé about needles, could have given himself the shot, but for whatever reason, he wanted me to do it. I think he wasn’t as blasé as he made himself out to be, or maybe he thought it was good for me. Maybe he just liked me doing it.

  I did think that it was a handy skill to have. I mean, what if I ever had to give one of my horses a shot and there was no one else around to do it? Up to that point I would have been too frightened. As it turned out, I became expert. I got lots of practice, and many doctors and nurses marveled at the lack of bruising from my shots. Patrick actually asked me to do it even when there was nurse around because I gave a better shot than many of them. Well, you know what? If I was going to do it, I wanted to be the best. No, that’s not true. I just never wanted to hurt him, and I had to be the best so I wouldn’t.

  —

  A WRITER-DIRECTOR friend was visiting one evening. I asked him how his new script was coming along. “Great,” he said, “Although I came out with two different versions in one part of the story.”

  It had obviously put him in a dilemma. “So, what did you do?” I chuckled.

  “I finally had to go back to my original notes,” he said, “to see what I intended this whole movie to be when I started out.”

  I had found myself wanting to go back, too. Everything had been turned on its side. I wanted to go back and refer to my notes when I started out on this life. The notes on how I wanted it to be, what I wanted it to mean . . .

  And then there was my time with Patrick.

  He and I had spent most of our lives together and I felt myself wanting to go back again, but in a different way. I wanted to go back with him. We were now nearing the end of his second cycle of chemotherapy. I had written this two months previously, the day after Patrick started his treatment at Stanford and we had such high hopes:

  —

  Forever

  ’Cause I wanna go back

  To the beginning

  I wanna start all over again

  I wanna try and fix the places where we went wrong

  I wanna go grow wise

  And sing a heart that’s true

  I wanna laugh loud and long

  At the terribleness we avoided

  I wanna touch you

  Forever and ever my love

  And know the joy that

  That has always brought me

  I wanna hear my voice when it caught in my throat, my mouth

  ’Cause I can’t say enough

  Of how much I love you

  I wanna go back and drive that car again

  I wanna pick you up and feel the freshness of together again

  I wanna go back and do it all over again

  So that I can have more time with you

  Double the time with you

  Triple the time with you.

  Until the end of time.

  June 2008, at a roundup in New Mexico.

  Chapter 8

  RUSSIAN ROULETTE

  GOOD-LOOKING PEOPLE TURN Me Off, Myself Included.”

  “The Idea of a Promiscuous Poke Never Turned Me On.”

  “All I’ve Got Is My Integrity ’Cause, to This Day, I Ain’t Never Seen a Hearse Pulling a U-Haul.”

  These are a few of Patrick’s quotations that appeared in various magazines. You never knew what Patrick was going to say next sometimes. It could be surprising. I don’t know where he was getting these ideas, it was almost like he just opened himself up and channeled them from some alternate universe. “A Promiscuous Poke Never Turned Me On.” If he was going to say something that showed his fidelity to me, I might have preferred something like, “I love Lisa so much I could never, ever, not in a million years imagine being with another woman.” Instead I got “A Promiscuous Poke Never Turned Me On.” Okay, I’ll take it!

  Sometimes he told the press a lot more than he should have because he figured, “If I tell them everything then they can’t hold anything against me.” Hmmm. I had to think about that one for a while. Here and there, I had to remind him to not share my deepest, darkest secrets with national and international press, as I tend to be a more private person. And he did his best to try to remember that.

  There was another quotation of Patrick’s that was embroidered in a brown, cream, and rust pillow that we kept in our house for many years. TV icon and journalist Barbara Walters had this cushion made and sent to us after her interview with Patrick after Dirty Dancing in 1988. The embroidery said: “Our Fights Are Huge But Our Love Is Huge.”

  Twelve years later, I looked at this pillow, shook my head, and said to Patrick, “We’ve got to burn this pillow.” We had come to a place in our relationship where we needed a little cool water poured on our brow and knew how long a way a little tenderness would go. This pillow, with this quotation, celebrated the tempestuous, argumentative parts of our relationship. We had grown older, and wiser, and knew this was not what we were striving for. We were striving for passion and loving actions. Not passion and throwing household items. It was hard to let go of that pillow—but we burned it in a little ceremony and vowed to elevate ourselves to higher level. If there is such a thing.

  Does this mean we didn’t argue?

  —

  WE DON’T always get asked to step up to the plate, and we wonder what we would do if faced with a terrible terminal illness. We imagine that our reaction would be like the movies, or at least a TV movie of the week. And of course, if we have a lick of sense, we know that it may not be as pat and perfect as a Hallmark card platitude. Judy Kaufman, a wonderful lady in Patient Services at Stanford Hospital, said to me, “We learn never to judge anyone. Whether it’s the patient, or the family, everyone handles illness in a different way. It doesn’t mean it’s good or bad. It’s just . . . different.”

  Never judge . . .

  She was saying this as I tapped my foot, waiting for Patrick to get off our airplane. We had flown into the Palo Alto airport, and he was rustling inside for God knows what. I had long disembarked, checked to make sure we had everything, had secured the plane, and had paid the ramp fee. I sighed and turned to her and wanted to say, “But he’s always done this.” And it was true. Patrick was chronically, historically late. I was always waiting for him. But even so, I had to entertain the possibility that this time, yeah, he was probably nervous about going in for chemotherapy treatment and that could well be the cause for his procrastination. Could be. This time. So, instead of yelling out that he needed to hurry it up, I made a decision that I was happy as long as he got to the center and got his treatment before everyone went home for the evening. Not such an easy thing for me.

  In all fairness, though, there were times I did yell at him. Really yelled and berated him to get him out the door, otherwise he would have missed his appointment. I’d make an ugly fuss and put on a big unhappy show as I pushed and prodded him. I remember once, when he was out of earshot, turning to our housekeeper, Celinda, who was just trying to mind her own business, to whisper secretly, “I’m not really mad. I just need to get him out of the door.” Even so, I always regretted raising my voice. As soon as we were on our way, I’d reached out to hold his hand to let him know that I loved him so fiercely that I wouldn’t let even him get in the way of his treatment and the possibility of getting better. He would always squeeze my hand back and all harsh words were gone instantly. As if they never existed.

  Our journey through this illness was not without bumps, arguments, impatience, sadness, and fear. But never, never in doubt was the love we had for each other. And yes, it could be exhausting, and the stress we experienced gave new meaning to the word. And as much as we were moving through amazing feelings and places together, here and there, tried and true problems would raise their ugly head. For example, I found that cancer could be used to excuse all sorts of things! I have a girlfriend who, at the same time Patrick was being treated for his illness, was taking her longtime boyfriend for treatment for head and neck cancer. A curable disease, but the treat
ment is awfully brutal. He and she got into a big argument and he threw up the “C” word to her, to which she sneered as best she could, “Thaaat’s riiight! I should leave you alone because yooooou have caaaan-cerrrr!” I cracked up laughing when she told me about this. It was so . . .

  Classic.

  I wrote the below when I was feeling sorry for myself and woefully unappreciated as I struggled with the stress of the responsibilities I had taken on:

  I got so pissed off yesterday and it’s still lingering today. What about? Well . . . Seems, yeah, Buddy’s sick, but . . . he’s still doing his same old behavior, i.e. staying up late, disappearing in his studio, no help, being late, late, late, unmotivated to be pro-active in his life . . . It’s just he has a better excuse for all of this behavior now. Cancer.

  And here I am, busting my ass. Doing the shopping, giving his medications, fixing him shakes, food, making sure he eats, driving him to his appointments, lifting anything heavy, calling people, making the appointments, waking him up, organizing his life, his career, his press, his world . . . And let’s face it, he’s well enough to hang out outside, drinking coffee, picking up emails, and smoking cigarettes! Now . . . is this his fault that he hardly lifts a finger to help himself? Or, is it mine? Is this really having to do with his behavior sans sickness, or . . . ?

  Let it go, let it go, let it go.

  March 29, 2008

  Hah! That last line is set to the tune of the Christmas carol “Let It Snow.” Let it go, let it go, let it go, instead of, Let it snow, let it snow, let it snow. A little in-house joke we used to sing out when someone infuriated us and there was nothing that could be done about it except to just move on.

  It wasn’t the last time I was going to have a moment when I felt like I was a plowhorse pulling the whole load with little help. But clearly, I had unequivocally chosen that path. And when you came down to it, I was grateful for it and for whatever I could do for him. So I got over feeling underappreciated pretty quickly. Particularly when it was clear that Patrick did appreciate everything I did. But often I felt like one of those one-man-band things, you know . . . where the guy is honking on a horn with one hand while the other hand clangs the tympani, and his foot beats the bass drum and his mouth blows on a kazoo.

  In my role with Patrick I did a number of things and played a variety of parts. I knew I wanted to empower Patrick to have the best attitude he could about his illness, and this was not always a one-note approach. I tried to be wise about what he needed at any given moment. We had been together so long, I knew where his “buttons” were, when he needed prodding, and when he needed me to hold his hand or just be plain left alone. Some years ago, we took a rafting trip on the Colorado River in the Grand Canyon. One of the guests was the great basketball coach Pat Riley and his wife, Christine. Pat had his book The Winner Within coming out, and I was asking him about what it was like to coach, really coach people. Even then I was heading toward directing and learning what I could about getting the best from people.

  “Everyone’s different,” he said. “To get the best out of a player sometimes demands very different approaches. There are some players that do their best when you use encouragement and validation. And then there are the ones that need you to get on them, yell at them and push them.”

  Sometimes I felt like a coach with Patrick, and I was always changing my game plan. In addition to being a coach, I was also nurse, administrator, wife, friend, and lover! A one-man band.

  —

  PATRICK CLEARLY knew that we were in this together. Once he complained when someone said, “We’re going to get treatment next Friday.”

  Patrick was peeved. “It’s not we. There’s no we about it,” he said to me in private, “I’m the one who’s getting treatment!”

  I winced, “Then I’m guilty of the same thing,” I confessed, “I’m always saying we this and we that.”

  “That’s different,” he said. “You’re allowed.”

  There was only one time when Patrick said in anger . . . like my girlfriend’s boyfriend did . . . that he was the one who had cancer.

  To which I replied with upset and anger, “This is happening to me, too!”

  I’ll never forget the look on his face. He can be so stubborn and willful, but his look showed such a deep, empathetic anguish for me. I knew he felt sorry he was pulling me into this, and it pained him that it hurt me. He never, ever, said that again.

  —

  WE HAD been so lucky thus far in the progress of his disease. And we lived in fear of getting a bad result in any one of his tests.

  But what about how hard it is to receive good news when the one you love is so sick? There’s an incredible irony to this situation. Nobody told me about that.

  Monday, June 9, 2008, I was sitting in the treatment room at Stanford. Patrick was lying on bed after being doted on by the nurses, and was waiting for the results of his next scans to come back. I would smile at him, take inventory of how good he was looking, so, surely, I thought, the scans would come back with a good indication. Surely . . .

  While we waited, we talked about who called us that day, what was on our agenda; turned on the TV in the room to see if anything was on; arranged the furniture so I had a makeshift desk I could put my computer on; picked up emails; filed the flight plan for the trip home; ate lunch . . . talked about whatever, and waited. The scans would show if the treatment was working or not. It would determine whether he continued on the course he was on, or that the well had gone dry and it was already time to try another of the precious few alternatives.

  Waiting for the scan results with a deadly cancer like this was like playing Russian roulette. It was like coolly waiting to find out if there’s a bullet in the chamber or not. What do you talk about while you’re waiting for the trigger to be pulled?

  Of course we didn’t talk about the what-ifs of the scans. Wow, what if this time you’re really dead? Didn’t try to predict. Gee, this could go one of two ways! We ignored it, as if this all-important moment was minuscule in the grand scheme of things. Because if the scans came back bad, part of us was prepared to not take that news as something that would seriously affect his longevity. If they were bad, it meant there would be a bump in the road. Just one more difficulty to deal with. That’s what we would bravely think to ourselves. I know that’s what he was thinking and he knew it was what I was thinking. We’d chat pleasantly and be upbeat to the nurses as they came in and out. We’d make them laugh . . .

  But your soul knows what a bad scan means. And you just can’t go there. But what if . . . what if . . . the results are positive? What if that hammer clicks on an empty chamber, no bullet? What if all your hard work and diligence in treating this terrible disease pays off? What if you’re just freakin’ lucky? The victory is so sweet you savor it like it’s the most delectable morsel ever. At the same time, it’s still painful . . . because there was the fear, and you know without a doubt just how much, how desperately you hoped for this positive result. You are aware of the consequences. And good news means a reprise. It means that, once again, you will know hope. And hope lays you open and vulnerable, and it’s harder to build your courage back up to the next time that the chamber gets spun and you put the gun back to your head for the next set of scans.

  Crazy, huh?

  Crazier still was going through all that and then having the trash tabloids killing him off every other week. It’s hard enough to face a life-and-death situation without having national and international tabloids taunting that you’re a dead man. Patrick always said that the worst of what that reporting did was that it destroyed hope. And hope is one of the few precious weapons you have against an illness like this. And hope is not just a wonderful, float-y, smile-y feeling. Hope takes courage beyond courage. This hope is earned in a way few people have to earn it. By going through hell and back again.

  But enough of that now. I’d like to go on a tabloid tirade, to tell you all the ways they tried to kill him off. You wouldn’t
believe it. But not now. Later . . .

  Because now, Dr. Fisher walks in and beckons us out into the empty hallway. He wakes up a waiting computer . . . and we look at the results of Patrick’s second scans.

  And they are good.

  They are good . . .

  So we start getting ready. We have about forty-five days. We’re going to Chicago to shoot a TV series.

  Chapter 9

  EMBRACING THE ALLIGATOR

  Happy day. July 13, 2008—Patrick, me, and Kuhaylan Roh,

  with Lucas lying nearby. (Photo by Brian Braff)

  IT’S HARD IN a situation like this not to agonize about the future. There were times when fear came and bit me hard. But it wouldn’t last too long . . . it separated me from what I loved. I didn’t want to waste any time worrying about the future, not when I had the chance to be with Patrick now.

  I had a dream several years ago that I’ve always tried to remember. In that dream, there was a monstrous, prehistoric alligator-type demon that was tearing down Foothill Blvd. in our neighborhood, causing mayhem and brutally eating anyone unfortunate enough to be in his way. Everyone was doing their best to escape the line of death and destruction the big reptile was making. And then I realized, the monster was coming straight toward me! I was quickly looking for whether I should jump off to the left or right to escape when suddenly—my instinct told me to stay . . . and I did. I stayed right there in his path and as he approached fiercely. I opened my arms to him. He slowed as he came upon me . . . and then laid his big, craggy head softly in my arms. He looked at me, his eyes full of hurt and gentleness. And I realized that all the monster wanted was to be understood. And that’s what I had just done.