Worth Fighting For: Love, Loss, and Moving Forward

by Lisa Niemi Swayze; Lisa Niemi

  In a cold dark room

  I am just a little girl

  a little girl who holds on to herself . . .

  And then I begged life not to take him away from me . . . Then, I finished packing up the apartment.

  Early December 2008, at Rancho Bizarro with Barbara Walters.

  (© Ron Tom/American Broadcasting Companies, Inc.)

  Chapter 12

  DANCING AS FAST AS WE CAN

  JUST BECAUSE PATRICK and I decided to get along in the cockpit of the airplanes we flew didn’t mean we never had any serious “differences of opinion.” I remember once as we were heading to our ranch in New Mexico during the summer months, during which, over Arizona, there tended to be a lot of large, potentially dangerous thunderstorms in the afternoon. On one such trip, we were in our Cessna 414 at the border of California and Arizona looking at a monster cloud that was developing right in our path. This thing looked evil. I was in the left seat flying, and I looked left and right . . . to go around it would take us fifty to one hundred miles out of our way, making us have to stop for more fuel. The thunderstorm was still in its early stages . . .

  Patrick said. “I think we should go up to twenty-seven thousand. I think that’ll put us on top. We’ll go over it.”

  I peered at the building clouds. “Naw, I think we should go under it. That way if things get bad, we can just land and wait it out. It’s still early in the afternoon; if we go high, we’ll get caught on top.”

  “No. We. Won’t. You’re crazy.”

  “You’re crazy.”

  “Noooo . . . ”

  And we were off in heated debate about the best course of action as the clouds loomed closer and closer. I don’t remember what we decided to do. I probably used my trump card of flying left seat to take the plane wherever I damn well pleased while letting him, grudgingly, help me pick my way through. Later, to settle our disagreement, though, we got on the phone with Frank Kratzer, our longtime flying instructor and beloved mentor. We made our respective cases for “going under” or “going over” as clearly and convincingly as each of us could.

  And then Captain Frank spoke. “You’re both wrong.”

  We looked at each other with surprise.

  “You don’t go over it and you don’t go under it. You go through it,” Frank said, “You guys! This is what you train for. This is why you have your instruments and weather equipment! Trust your instruments. And stay on your altitude.”

  The next flight that we had a monster cloud in front of us, Patrick and I looked at each other and smiled, took a breath . . . and entered the cloud. Relying on our instruments and training, we threaded our way through. Never even hitting a bump. We exited the area of bad weather, and it was as if it was just another day in the airplane and we were focused on the approach into our destination. But we knew what had just happened and had a sense of personal satisfaction, elation, and pride.

  Yes. And that’s how you get it done. You go through it.

  —

  SOMETIMES WHEN things got really hard and it was getting too much, I would feel a part of myself go a bit numb. I joked that somehow, somewhere, I lost some brain cells along the way. Areas that I was sharp in before, I now seemed to be fairly hopeless in. Information that didn’t have to do with Patrick’s illness (or shooting a TV episode) I had trouble retaining. Since the beginning of his illness, I had been unable to read anything that took too much concentration, like a book. I would start to read a page . . . and then I would have to read the same page again . . . and again. After five tries I’d put it down and quit trying. Honestly. I had labeled this as having some kind of imperfect mind filter. While some of the bad stuff that was happening was getting filtered out, what I had for breakfast and figuring out a dinner tip got filtered out also. I was told later on that these lapses and being dazed is, in fact, a coping mechanism. It’s your brain saying this is too much and I’ve got to shut this down. It’s a way that your mind protects you, so you can be there for the things that are important and meaningful. It’s just, you have to endure some temporary stupidity while some of the more unnecessary things get crossed off the daily list.

  Of course there are things that snap you back into reality. Things that change everything and jolt you fully awake and sharp as a tack . . .

  —

  “FORTY THOUSAND dollars! It cost what?”

  I was in the treatment room at Stanford asking our wonderful patient relations guy, Michael, to confirm what he had just said as he organized the new paperwork for Patrick’s first Oxaliplatin treatment.

  “Forty thousand.” Michael nodded. “Insurance may cover it, but you have to sign the paper acknowledging that you are responsible in case it doesn’t. Sometimes they don’t cover it if they consider it experimental.”

  “It costs . . . forty thousand dollars?” I was still flabbergasted. I quickly glanced at Patrick and went back to Michael and homed in. “Is that for several treatments, or for a full cycle, or . . .”

  “It’s for one treatment,” Michael confirmed.

  “Wow,” Patrick said, sitting on the bed with his feet up. He was impressed but seemed to be calm. Like it was all going to work out so he wasn’t going to worry too much about it.

  “Forty thousand for one treatment?” As you can see, I was still in shock.

  Michael explained good-naturedly, “Believe it, or not, there are some treatments that go up to a hundred and fifty, sometimes two hundred thousand dollars a pop. We have some people from other countries who come in carrying up to two hundred thousand in cash. They pay in cash. It’s pretty wild.”

  “I had no idea . . .”

  Michael looked at me. “I have a friend I can call who would be able to tell me pretty quickly if it’s covered under your insurance plan. Would you like me to do that?”

  I smiled at him. “Yes. That would be great.”

  He was gone about ten minutes.

  In the time he was gone, my mind was whirling with the possible ramifications if our insurance didn’t cover it. It was scary, and it scared me for other people facing the same situation. I saw that this is how people lose their houses, and quickly put themselves into a debt that they, and their families, can never recover from.

  I remembered a woman who, soon after Patrick was diagnosed, was using Patrick’s name on a website to try to get some drug company in North Carolina to give her their new drug to treat her pancreatic cancer. The site made it look like Patrick was involved and supporting her cause, and if you helped that lady, all Patrick’s fans would be helping him as well. It was wrong that she was using his name, but although it was wrong, I was beginning to be less critical of her actions and to understand her predicament. She had wanted to get into this drug company’s clinical study program because it’s free. She had been refused by the program because she was not qualified—just like Patrick was before we discovered his bilirubin levels were right. So there were two good reasons she wanted to get this experimental drug: because 1) the current drugs out there are just not effective enough in the fight against pancreatic cancer, 2) the clinical trials are free of charge.

  I had been so focused on fighting this cancer with Patrick that I never thought about the money. That’s what we had insurance for, right? And now I remembered Doctor Fisher and Doctor Cabebe intoning when we first signed up at Stanford, “And because it’s a clinical trial, it’s free!”

  We were so lucky to have insurance. And we were so lucky to have been in a clinical trial that had helped Patrick survive for the past ten months. Treatment is phenomenally expensive and so are hospitals. And we hadn’t seen the end of them yet.

  Michael came back in after checking on the insurance. I held my breath. Yes, he confirmed, the Oxi would be covered by our insurance. I breathed easier and signed the paper of acceptance.

  And once again, I was happy we had insurance.

  Actually, a month earlier in Chicago, we almost lost our insurance. I got a letter in the mail from the Screen Actors
Guild Health Plan saying that Patrick’s insurance would be expiring within thirty days. It said that he had not met eligibility requirements. This I couldn’t believe! Patrick had been a working actor in the Screen Actors Guild for almost thirty years! And even on past projects, he still had money coming in that would have qualified him for the insurance. I called Melissa Gilbert, who had worked with Patrick two years earlier on a musical project. Melissa was a former Screen Actors Guild president and all-around great lady. She put me in touch with someone who might help me at SAG. But it was true. Patrick’s insurance was being canceled. Turns out that SAG puts a cap on earnings—that is, you can only count up to a certain dollar amount for eligibility and then it no longer counts. How crazy is that? So all the movies he had done no longer counted. Melissa shook her head with sympathetic understanding, “Unfortunately, that’s the way it is,” she said. “Listen, even Patty Duke is not eligible for the Health Plan.” And of course Patty Duke is a legendary actress and a former Screen Actors Guild president. I was disgusted. Luckily though, the series The Beast was going to qualify Patrick for the AFTRA Health Plan (American Federation of Television and Radio Artists). We just needed to bridge the gap over a month or so until it kicked in. Jeez.

  It was a good thing we had an alternative. This was not the time we wanted Patrick to be without health insurance! I was thankful he was covered. And I knew how hard it must be for those that weren’t, the hoops that they had to jump through, the limitations on forward-thinking treatments, the long waits and worry. I know I would have given anything for Patrick to be better. I could surely imagine that others felt the same about their loved ones.

  —

  USUALLY AFTER we finish a job, we have a little time off to recuperate. Unfortunately, though, cancer doesn’t go on vacation. And besides, we had some other cookies in the oven. So, three days after we landed back in Los Angeles, Patrick had that first treatment of Oxaliplatin at Stanford, and then three days later we were sitting down for an interview with Barbara Walters at our Rancho Bizarro home in LA.

  This was the first interview Patrick would do since he was diagnosed, so it was particularly sensitive for him. He had done the Stand Up to Cancer program, and had shot the television series. Now it was time for him to speak publicly and personally. It was important to us that we focus on the positive things—that he was living his life, and not just that he had a disease that proves fatal so quickly to so many people. Well . . . that’s what I wanted anyway.

  We chose Barbara to do the interview. Not only because she’s a consummate pro, but also because there was some history there. Over twenty years ago there was a warmth and connection that started with the interview she did with Patrick after Dirty Dancing and the ensuing whirlwind. It was an interview that was remembered for a very long time, mostly because of Patrick’s emotional moment when he spoke about his beloved Dad’s death. And for Barbara, it would show up on the list of her all-time favorite interviews. Coincidentally, I remember (and I’m probably the only one who does) at the end of that first interview, Barbara looked at Patrick and me and mused, “I’d like to come back in twenty years and see how you guys are doing.” At that time I thought, Wow, she’s being pretty optimistic considering that marriages in Hollywood don’t last too long! But here she was going to be—twenty years later with us again, even in the same house as before. Unfortunately, now, it wasn’t any Hollywood statistic that threatened to part us.

  We trusted Barbara to tell Patrick’s current story in a fair manner. At the same time, we knew she could be extremely straightforward and blunt with her questions. But that was okay. It was one thing to pry into personal issues and then sensationalize it to the highest degree, and it’s another to take that same information and report it as best you could. ’Cause let’s face it, we didn’t need to be sensationalized. What was happening in our lives was the stuff that highest drama is made of. But not everyone knows how to tell such a story. Barbara does.

  Some weeks before her showing up, I had been asked if I would take part in the interview. I said no. I was afraid it would be way too emotional for me.

  “They’re asking again. They’d really like you to be a part,” our publicist, Annett, told me.

  I explained some of my concerns. “Look, this could be a hard thing for me to do. And it could come out one of two ways—I could be totally emotional and embarrass myself on national television. Or, I could keep it together so much that people wonder why I’m so cavalier in a situation like this and it’ll look like I don’t care.”

  The way I saw it, it was lose/lose. But . . . as the date loomed closer and they were still asking if I’d sit down for the interview, I capitulated and said I’d do it. I just decided that I would have to trust the situation. And however it came out . . . well, that’s just what it’d have to be.

  There’s always a lot of activity when crews show up at our house to film. And this was no exception. Barbara has been doing this for decades, and the quality she and her crew strive for is very high. I loved it that she and her staff cared so much to make sure everything was done right. Everyone was doing their best, but the day didn’t come without its own small mishaps and delays. It was pretty hilarious also how much everyone jumped to attention when something was wrong. Even our housekeeper, Celinda, and Dr. Fisher, who had come down for the day to be interviewed, had to be on their toes.

  During George’s interview there was a fly circling his head and face. Finally, Barbara stopped the interview and called out, “Can someone please get rid of that fly??” And she complained, frustrated, “Where are these flies coming from anyway?” I had to grin. “It’s a warm day today and this is a horse ranch. There’s gonna be a couple of flies around.” I tried to swat the errant fly. Another person was trying to waylay the culprit also, while yet another scrummaged in his truck and came back with a can of bug spray. He quickly stuck it near George’s face and sprayed all around his head. George held his breath! It was pretty funny that the doctor got bug spray all over his head. But . . . welcome to show business! Whatever it takes!

  As if the fly disrupting shooting wasn’t enough, five minutes later, the coffeemaker in the kitchen started to gurgle. I guess Celinda had started a fresh pot of coffee for everyone and the water had just heated up.

  “Is someone making coffee?” Barbara stopped again and exclaimed in disbelief.

  I wasn’t in the kitchen, but I could hear people scurrying around in there, and in a few moments, it was quiet again. Barbara went on to finish her interview with Dr. Fisher without further interruption.

  For Patrick and myself, the interview was tough. Before we even started, I had to go into our bedroom and give Patrick some moral support before he came out to meet everyone. And then, he surprised me by being what seemed to me angry and a bit bitter during the interview. He had been so unfailingly positive before and suddenly he was letting some of the “dark side” spew. And of course, the “dark side” is something that exists, but I hated that he was focusing on this to the exclusion of everything else.

  There was a lot of pressure on him, since this was his first interview since becoming ill. And it’s a difficult story to tell. It’s like, okay, this is your chance to tell what it’s really like. Do you focus on the bad stuff, or the good? Ideally, you do both, but he tended to focus solely on the bad. I was running through my mind, why he would be doing this . . . He had felt really crappy in the last few weeks. Did he feel so bad that he forgot how great he was feeling just two months before? Am I in denial about how bad he feels? He just had new chemo, maybe it’s that? During a break in the interview, I stood off to the side with him and reminded him that he needed to tell the whole journey, not just the negative parts. He had been so strong and positive for the last eleven months. I wondered how could he have so soon forgotten. He even said that chemo was “hell on wheels.” And while chemotherapy can be tough, he seemed to have forgotten the many good days it had afforded him, in addition to its contribution in keeping him al
ive for the last eleven months!

  Do I sound unnecessarily petty about this? Okay, I was a little mad at him. Under this anger, though, what was happening brought forward an awful question. Have I been totally wrong about what I’ve been seeing? How incredibly terrible would that be? And then I remembered . . .

  He just got finished playing a role.

  Patrick tended to be one of those actors who had a hard time dropping his roles after work. I had always said, “Please don’t let Patrick play an axe murderer, ’cause I don’t want that coming home at night!”

  Did I mention that he could be complicated?

  And I’m not belittling cancer, but . . . He had just gotten through playing “Barker” for the last five months, a character who focused on the negative, was angry, and had a kind of smart, sharp bitterness. If you look at how he talks with Barbara and then look at the film clips they show of him as “Barker,” you’ll see what I mean! He just hadn’t completely dropped “Barker” yet.

  And by the way, I thought he was incredible as “Barker.” I thought it was some of the best work he’d done. It may have been because of the illness, and it may have been the role, but definitely it was because of his talent. He immersed himself in this part in the best way possible. “Patrick” disappeared, and there was only “Barker.” And he was stunning. I was so proud. There are things in his work on The Beast that no one could have done like he did. No one. He was just dazzling.

  So Patrick seemed to be taking the opportunity to say every negative thing he could think of in the interview. Me? I was emotional.

  When I saw myself later (I had to force myself to watch), I could tell the emotional stress I was under. My jaw clenched and barely moved along with other parts of my face and body, and I smiled a lot. Smiling is what us Southern girls do. We smile when we’re angry and we smile when we don’t want to cry. As with many women, it can be pretty much an automatic reaction to any intense feeling. Unfortunately, this happens because many of us are taught that if you express anger you are a bitch, and tears make you ugly or a pain in the ass. I teared up during the interview, but I was ultimately pleased that I didn’t break down into uncontrollable sobs, which was one of the things I was afraid of. With the exception of a few occasions, I had kept it pretty well together in the past year. And if I was going to finally let it all out . . . let the entire deep, dark crevice of pain out . . . I wasn’t going to do it on national television. Of course Barbara was going to ask questions like, “Have you faced the prospect of life without Patrick?” and there were people who thought that was unfair of her to ask. But I knew it was a question that had to be asked and I did my best to answer (and still keep it together), because I had thought of it. And what I came to was . . . I didn’t know what I was going to do . . . I would just have to figure that out when I got there.