Worth Fighting For: Love, Loss, and Moving Forward

by Lisa Niemi Swayze; Lisa Niemi

  I needed to hang in there. The prospects were so dim, I instinctively felt that I shouldn’t just give over his care completely to the doctors, nurses, and hospitals, or to anybody else. Patrick wasn’t the only one they were treating. They couldn’t devote the kind of energy I was prepared to contribute to his health. They’re also human beings, they can make mistakes, they can get overloaded with work themselves . . . I didn’t want to take that big a chance. In other areas of my life, I could feel paralyzed, but not here. Not if I wanted to help him.

  When I felt fear, I tried to do the same thing I did in an airplane—I nicely but firmly told it to sit in the seat behind me while I figure something out or addressed the task at hand. I was asking it to do that now. Yes, I know you’re there . . . but you’re going to have to sit there until this is done. Then you can go crazy, but not now. I had also trained and competed in aerobatics. You know, where you turn the airplane upside down and do loops and stuff? I felt that made me a better and safer pilot, because if something happened to the plane, I wasn’t going to freak out. And if the worst happened, if I was going down, I was going to be flying, and I was going to keep a cool head while I didn’t give up trying to save that plane right through to the end.

  It’s not often you get asked to face something so difficult, emotional, and potentially devastating as a life-threatening illness. And every day I wished it were different. But you do your best, whatever that might be. Whatever that might be . . . So much of the time everything can feel like it’s beyond human endurance. But you do it anyway. Why? Because it means life and death. You do it. And you keep your eye on the prize.

  —

  AS WE approached the end of Patrick’s first cycle of four weeks of chemotherapy, we sat in the treatment room at Stanford and they took more blood to run a CA19-9 test. We had been on pins and needles to hear some kind of results. Anything. This would be a preliminary test, a teaser to the scans that would be taken in another month. That was the deal—Patrick needed to have at least two cycles before he had another set of scans done. “Give the treatment a chance to work,” Dr. Fisher said. It was hard to be patient, but patient is what we had to be.

  That day, Patrick looked at Dr. Fisher and marveled cautiously, “I feel . . . pretty good. It’s the best I’ve felt since before I was diagnosed.” We were all cautious, but couldn’t help but feel that this was a good sign, that this might be a good indication that the treatment was having a positive effect. But new labs on his blood might say something different.

  —

  THERE’S ONE thing about facing possible death. There’s no time like the present to be who you want to be. No holds barred, let’s pull out all the stops, no reservations. I don’t know what Patrick saw when he looked at me, but I know I admired how he was facing his illness. I’d been with him for over three decades and seen the worst and the best of who he could be. And now, faced with the worst that could happen, I saw a true hero emerge from him. Not like one of those in the movies, playing a part that everyone expected of him, no . . . this was better. It was a hero who was humble, brave, loving, kind, wise, and tough. It was as if he had also dropped his cloak and revealed his true self. And he was a hero. And if there was one thing I wanted to show Patrick, other than that I loved him, it was that if Death was going to come take him, Death would have to pry him out of my cold, clamped-on fingers. I was not going to let him go easily.

  There was also no better time for us to be presented with a . . .

  Unique . . .

  Precious . . .

  Opportunity.

  We got to live now. We got to know what was important. Our souls embraced what was before us.

  Fear can isolate you from each other. Everyone’s worried about what the other person is feeling, what they themselves are feeling, what’s the right thing to do, and in some cases, I’m sure many people even wonder what the heck does anything matter anyway at this point and give up. Facing possible death is a fearsome thing. Not only for the one who’s intimately involved, but for everyone around that person. Cancer doesn’t discriminate. It sets out to wipe out everyone in its path. Everyone. And this fear can draw a dividing line, not only within yourself, but with each other.

  When I started flying aerobatics, it was interesting what the recovery procedure was for a spin. For decades, if you entered a spin, you died. There was no recovery. Until one person did the unthinkable . . . he survived. Even better, he had the presence of mind to remember what he did . . .

  POWER OFF.

  HANDS OFF.

  Then, and only then . . . STEP LEFT, STEP RIGHT.

  Isn’t it interesting, the only way to gain control of the airplane was to let go . . . Power Off . . . Hands Off . . . It’s like, you give up the airplane to itself and take yourself out of the equation. Could you imagine how hard it would be to do this, to relinquish control when you were in a life and death situation and just go with it?

  In a way, this is what Patrick and I did with each other. We could have let fear and our struggles rule us. But we threw caution to the wind. We let go. We risked. We trusted. And we went on a ride into unknown, uncharted territories. Together.

  The mere act of being with each other righted our course beyond anything that we could have imagined. And brought us closer than ever.

  —

  AFTER THE “one month” of chemo, Patrick’s blood results came back.

  When he started treatment, his CA19-9 number was 1,240. And now . . . it was down to 508!

  Okay. If I can bore you for a second (trust me, these things aren’t boring if they’re happening to you!), the CA19-9 blood test measures molecules that contain a bevy of protein and carbohydrates. These are molecules that have fallen/shed off the surface of tumors and into the bloodstream, where they can be picked up by the CA19-9 test. The amount of these molecules roughly indicates the rate of tumor activity. It’s not so accurate that you would stake a diagnosis on it, but it gives a very good indication of the trend of the disease—that is, is it getting worse or better? Patrick’s CA19-9 dropping from 1,240 to 508 was significant, and according to the doctor, was . . .

  “Almost always associated with favorable response to chemo.” Dr. Fisher nodded.

  It was precious, good news. These results so far, his feeling good, the lowered CA19-9, heartened us.

  We still had another cycle to do before Patrick had new scans done, though, and we geared up for this second round, which would take place over the next month. And, although we never thought it was going to be easy, we had already been rewarded with victory. More than once! Which made what was going to happen next all the more ironic. Our lives were going to get harder to deal with. And soon.

  Can you see what’s here? If you can’t, that’s good.

  It’s the screen material I put on our fence to keep photographers

  from taking pictures of us at home.

  Chapter 5

  EVERYBODY

  FINDS OUT

  IT WAS ON a typical, sunny, Southern California Wednesday morning, March 5, 2008, that Patrick’s mother, Patsy, now eighty years old, got up to answer the doorbell in her Simi Valley home. She was there that morning to answer the door because she had just retired the previous year after successfully teaching dance for over sixty years, and she was sitting at home now, wondering what to do with the rest of her life. It was a tough adjustment after being so busy and independent and always carrying such a heavy workload, and she was bored to death. But she did her best to bear it with the grace of someone who’s spent her whole life demonstrating to thousands how to point their feet and hold their arms and shoulders with a dancer’s elegance.

  Her bones creaked a bit as she started to move, but then she bounced up with a sprite’s agility as she always did, and made her way to the door. She opened it to find a man she didn’t know standing there. A man from the tabloids.

  “Mrs. Swayze?” he spoke.

  “Yes?” Patsy queried.

  “Mrs. Swayze, how
do you feel about your son, Patrick, having pancreatic cancer?”

  “Whaaat?”

  Patsy was shocked; she sputtered that she didn’t know anything about it. Stunned, she closed the door, made her way to the phone, and dialed Donny, panicking at the horrible fear rising inside her. “Donny?” she gasped, tears threatening to overtake her as he picked up the phone, “Donny? There was a man at the door . . . please tell me it isn’t true . . .”

  And that’s how his mom found out.

  Patsy was one of the people we had not told, and for a good reason. When she answered the door, she had adjusted the dark glasses she was wearing to make sure they stayed on properly. She was wearing dark glasses because she had just had eye surgery to help correct the terrible vision problems she was having. She needed to protect her eyes for at least a month. She had to avoid wind, dust, light, and she had to not cry. And of course, now she was doing everything we were trying to avoid—getting upset and crying. How was she going to not cry knowing her son had pancreatic cancer?

  —

  PATRICK SWAYZE HAS 5 WEEKS TO LIVE!

  That’s what the headline read on the National Enquirer that hit the stands that morning. Inside the article, it reported that Patrick’s response to treatment had been “less than his doctors hoped for” and that he should “prepare for the end.”

  Wow. Pretty brutal. Inaccurate, yes. And brutal.

  And unfortunately, it was no longer our private battle. The news was everywhere. Our phone was ringing with upset people, Patsy was crying, and we were deluged with well-wishers and emotion from friends and family, along with both tabloid and legitimate news entities wanting more information. We had known that if word got out it could blow up into something big. But this was assuming epic proportions. The news was everywhere, and a friend remarked that the kind of coverage that Patrick was getting was usually reserved for heads of state.

  Within twenty-four hours of the word getting out, I put together an email to send out to worried friends, acquaintances, and family. I knew they’d be shocked and would want to know what was going on. Patrick and I wanted them to know we were thinking of them also:

  Dear Friends,

  Many of you may have read or heard the terrible reports that Patrick has cancer and has weeks to live. It’s unfortunate that this private matter has been released in this insensitive way, and we’re sorry for how upsetting this might have been for many of you.

  The facts of the matter are:

  YES. Patrick has been diagnosed with pancreatic cancer.

  NO. There is no prognosis that he only has five weeks to live, or that doctors hold little hope.

  And then I included the press release we had quickly put together with Annett and Dr. Fisher. Annett, our publicist, was being deluged, and we had to say something to the press. Here is what we said:

  Actor Patrick Swayze has been diagnosed with Pancreatic Cancer and is currently undergoing treatment. Patrick’s physician, Dr. George Fisher, states, “Patrick has a very limited amount of disease and he appears to be responding well to treatment thus far. All of the reports stating the timeframe of his prognosis and his physical side effects are absolutely untrue. We are considerably more optimistic.” Patrick is continuing his normal schedule during this time, which includes working on upcoming projects. The outpouring of support and concern he has already received from the public is deeply appreciated by Patrick and his family.

  I also included an update on how we were addressing the disease:

  You will be pleased to know that he is receiving the best, most cutting edge treatment and has an incredible support team of physicians. He is in absolutely the best possible hands. And besides, you know Patrick . . . if there’s a way he will, and his will usually finds a way!

  Your love and support mean a lot to both of us. We strongly believe in the power of positive energy and intention and appreciate any and all contributions of positive attitude, in whatever form that may take.

  —

  LETTERS AND emails started to pour in. To us, to our agent, our publicist. There were messages of wonderful support, but also, suddenly, there were people trying to use Patrick’s name and health circumstance for their own gain—whether to raise money, or to lean on a drug company to get their own treatment, or to gain publicity for a movie. Representatives of one such film said Patrick backed out because of his illness, when in fact Patrick never even read the script and turned down the offer long before he was diagnosed. Unscrupulous reporters managed to get phone numbers, both listed and unlisted, for Maria, Ed and Donny, among other people, and the more unscrupulous of those lied about who they were, saying they worked for the LA Times or some other reputable entity, or that we were sanctioning the article, or even that it was to benefit pancreatic cancer research.

  Of course the day the news broke . . . I was scheduled to fly a charter.

  Crazy.

  It was just a day trip, no more overnights, and I’d be back before dark. I already knew about Patrick’s illness and had for some time, right? But the lid had just blown off the world as I knew it. I showed up at Sun Quest to fly the trip like it was any normal day. But it wasn’t. On occasion I’ve had the ability to downplay the most incredible things that were happening in our lives, but this turned out to be a little much! The news about Patrick’s health was all over the world, and I was going to fly a trip like I was any old first officer. It felt so strange, so strange to insist on acting normal when everyone around me was not normal. But what else was I going to do? Go home and hide my head? And for how long? Everyone at Sun Quest had heard the news and appreciated that somehow I still managed to show up. I felt a little sheepish, I mean, I had kept the reason for our trips to Stanford secret from them also. But they didn’t feel the need to ask any questions, not one. They just let me know they were there if we needed them and that we had the use of their other planes to get to treatment in case ours had any down time, and we gratefully ended up taking them up on that offer on a few occasions.

  Speaking of our airplane, 400KW. We were perplexed how photographers knew where we were. They were lurking in the bushes like guerilla soldiers when we took off at the airports, shooting over fences with a super-long lens, or even pretending to pose for a group photo outside another aircraft far, far away, when they were, in fact, shooting us. And of course they were taking less-than-flattering photos of Patrick. But then we discovered that online programs designed to track aircraft were following the flights of our airplane. All you do is enter the plane’s tail number (the letters and numbers you see on the tail of the aircraft) and you can get information on when and where the plane is scheduled to depart, if the plane is in the air now, and its exact location, and when and where it’s going to land. You can even get the plane’s entire history for the past year. This is why we had photographers waiting at every airport where we landed. To remedy this, I had to file a request with the NBAA to block our tail number from these sites, then set up our own tracking account so that Sun Quest could still follow the movements of our plane. It took me about three weeks to put all this into action. But it got done.

  There was also the issue of who leaked the news about Patrick’s health. I don’t know about Cedars-Sinai, but Stanford Hospital took it very seriously and launched a full and comprehensive investigation. So few people in our personal life knew about Patrick’s cancer, and even the ones who did knew little of the specific details. The leak of information had to come from someone in the medical profession. Are you aware that if you work in the medical profession and you give out personal medical information it is a felony? A felony. There are reasons these laws exist. And it’s not only to protect the patient’s privacy. To divulge medical information can have a huge impact on someone’s life and on those around him—it can cause job and financial ruin, bring down companies, devastate families, affect insurance issues . . . it can destroy, unnecessarily, patients’ lives, and those of others. And for what? In our case, so someone could line his pockets
with a little money.

  The tabloids endlessly followed us, taking photos, reporting that Patrick’s hair was thinning (not true), that he was smoking cigarettes (unfortunately true). They reported that he had lost more than twenty pounds and now his weight was 140. Okay now . . . let’s get real . . . I had been struggling with my weight since I quit smoking three years previously and was hovering right around 140. I dieted, I exercised, I commiserated with my other friends in the same predicament, and no matter what I did, I couldn’t shake this weight off. And all I can say is—Patrick was never down to 140 pounds, because if he ever was, if he was ever lighter than me without even trying, the disease wouldn’t kill him, I would. (Did anyone laugh? I joked about this a few times to various people and I never got a laugh. I thought it was pretty funny. No . . . ?)

  One thing we always tried to do was find some humor in the situations we were in, even if it was some pretty bad humor. Pancreatic cancer isn’t exactly a hilarious subject, but leave it to Patrick to find something amusing. He was the self-proclaimed “King of Irreverence” and prided himself that “nothing is sacred or off-limits for me.” And he had no problem with calling it in on himself, even in this situation, albeit with gallows humor. He and Donny got a great laugh over, “Nobody puts Patrick’s pancreas in a corner,” which played on the famous Dirty Dancing line. And though there is no doubt how incredibly sensitive Patrick was to people’s suffering, we did chuckle that if he kept losing weight, his next job would be Holocaust—The Musical. That is of course, if I didn’t get to him first.