Worth Fighting For: Love, Loss, and Moving Forward

by Lisa Niemi Swayze; Lisa Niemi

  I had the greatest hopes for our fight against this cancer. But, as we were told, this diagnosis brought with it a probable death sentence. In my personal, private time, I had to deal with my own suffering. While we were determined to be realistic about it and not cover our heads in fear or denial, we held out the hope that things would be different for Patrick. Still, with this kind of disease, you can’t help but be thrown into a kind of grieving process. Starting from day one I couldn’t stop this feeling, this terrible sense of the loss I was facing, the loss that everyone said was coming. And every day I agonized in private. I’m amazed how strong and positive and “on point” I seemed to be in dealing with the daily ins and outs of his treatment and living our lives to the best of our ability. And I truly believed in the power of being positive. But in my personal moments, I felt like I was living in a nightmare that I couldn’t wake up from. I marveled that I had enough focus to drive a car, because I felt so numb and so in pain.

  What did I do to try to deal with this? Just tried to remember to breathe, and to get through each twenty-four hours. Sometimes . . . just the next hour.

  There was a big learning curve that came along with all of this. And coupled with the emotional stress, sometimes the strain of learning so much new information so quickly made me feel like my brain was at the snapping point, like it was ready to explode. I remember going to sleep and repeating the name of one of Patrick’s nausea medications over and over and over. I repeated in my mind the right way to say it, “O-dan-se-tron” and the wrong way to say it, “O-de-nes-tron.” “O-dan-se-tron.” “O-de-nes-tron.” Over and over, as if Patrick’s life depended on my pronunciation of this word! Aaarrgh! It was like I had a glitch in my circuitry. Like the black cat in the movie The Matrix that keeps repeating over and over. Fortunately, though, this particular medication was the first of three nausea medications he could take, so we ended up calling it simply “Number One.” That worked for me!

  Needless to say, I had copious lists. I had my yellow legal pad with notes from every conversation concerning his illness and the list of possible alternative directions. I also made and printed out a detailed graph of his medications so I could fill in and track what he had taken and when. This last item was very valuable. The medications were complicated, important, and could be difficult to remember, as there were up to twelve items on his daily list and the dosage varied from once to four times a day. I was secretly pleased when the folks at Stanford saw my spreadsheet and were impressed. Every week they happily asked to copy it for their files. I felt like kid showing off a good report card, like I deserved an apple or a gold star.

  —

  I WAS frustrated with the lack of nutritional advice other than the normal mainstay regimens. Patrick had already dropped weight, and it was his job to put on and keep on weight for the fight ahead. The problem was that his stomach was still feeling full, he had absolutely no appetite, and he had to be careful about certain foods (leafy vegetables, sticky, elastic foods) that could clog the stent that was working within him. I kept wanting to find the magic answer, when in reality, I needed to reinvent the wheel for his personal nutrition. It made me laugh, because everyone was thinking he was on some kind of macrobiotic or high antioxidant diet when in reality, I was happy that he ate anything. Anything at all! Ice cream, great! Calories, calories, was the word of the moment, with protein coming in a close second. We had to make every bite count! It’s weird when you’ve spent years looking at the calorie, fat, and carb totals on packages in the supermarket and suddenly find yourself putting foods back on the shelf because they don’t have enough calories for your liking. I also experimented, blending everything into a puree. Even blending yellowtail sushi for him, and guess what it tasted like—yellowtail sushi. The chicken pot pie was not as successful, and I would not recommend it!

  We also had to be careful not to go off on extreme diets that would interfere with his digestive system, or deluge his system with vitamins. It’s a catch 22—your body loves to consume healthy vitamins, but the cancer does, too. You may think you’re making your body able to fight the cancer, but in reality, you’re just feeding the cancer. And sugar—cutting him off from sugar entirely wasn’t good either. The body needs sugar to function. If we severely limited his sugar intake, his body would eventually take proteins from his body to produce sugar on its own. And he needed those proteins! He had already lost some muscle mass and was struggling to keep what he had. He didn’t need to lose more! I had to appreciate the merciless, insidious nature of cancer—it destroys your appetite while it’s feeding off the nutrients in your body. It’s no wonder that many people “go” so fast. Patrick knew this. He forced himself to nourish himself, even if it was the last thing he wanted to do. I’m so glad he made the effort, I would have been pretty upset otherwise.

  Anyway, I digress. As you can see, nutrition was a daily and passionate obsession. I finally found a protein shake supplement that was actually 1,250 calories per serving (although I had to cut it in half because it was too thick at the full portion). I blended it with raw cashews and other nuts and seeds, and he drank it for a while, until like everything else, he couldn’t bear it anymore, and I had to find something new and different! In the end, eating still came down to old-fashioned balance. Counting calories and protein, yes, but eating as balanced a diet as he could.

  —

  DURING ALL this jockeying around and trying to get our bearings, flying up to Stanford for treatment and organizing ourselves here at home, we were able to keep his diagnosis a secret. One thing we knew for sure—we didn’t want everyone knowing and blowing this thing up into huge proportions, which meant that very, very few people could know. At the same time, it was important that some did. I knew that there were some things that Patrick probably didn’t feel free to express to me. Knew he needed someone he could say these things to, someone he could trust. That person was his brother, Donny, and Donny came in with full support. For me, it was my friends, Lynne and Kay. As I already mentioned, Patrick had issues with alcohol over the years, and one of the best things I ever did for myself and for our relationship was join Al-Anon, the twelve-step program that gives support to people who are dealing with a loved one’s or friend’s drinking problem. Both Lynne and Kay had been my sponsors in the program at one time or another, and I knew beyond a shadow of a doubt that I could entrust my feelings and any information to them and it would be consigned to what they called “The Vault.” Kay, herself, had just lost her mother the previous year to Alzheimer’s, and taking care of her and losing her had been very tough for her. She knew a bit of the territory I was treading.

  “I know Al-Anon has all these tools and these guidelines to live your life by.” Kay nodded firmly when I told her what was going on. “But as of now, all the rules are out the window!” She was right, and I felt bolstered by her support.

  Our sister-in-law, Jessica, worked for us and needed to know why all these doctors were calling, along with her husband, and my brother, Paul, who was over at our house practically every day.

  Everyone loved Patrick. And though he liked to push his limits and take chances, he appeared to be indestructible. He could be larger than life and adorable. That this could happen to him was beyond comprehension. It was tough for the few who knew what was going on, and there were tears at times. But they were wonderful enough to not burden Patrick with their tears, they were there to help and support him in any way they could. They knew our energies were going toward finding a solution, if one could be found.

  And then there were the few people in our professional lives: our lawyer, agent, and manager . . . all people we’ve known for over twenty-five years and call our friends. And when Patrick started treatment, we all determined that the network, A&E, and Sony Studio had to be told. Just a little over a month before, in Chicago, Patrick had shot a pilot for a television series named The Beast, in which he plays a darkly unorthodox but brilliant FBI agent. A&E and Sony were in the midst of deciding whether to
go ahead with a full season of The Beast. This little piece of news just might have some bearing on their decision. So Patrick and I invited the show’s producers and writers over to the ranch for a meeting.

  We sat in the living room, fireplace lit and warming the room, and after our hellos and how are yous were done, Patrick announced that he had pancreatic cancer. It was like a silent bomb had just been dropped. He went on to explain his diagnosis, what the protocol was . . . his chances . . .

  We moved outside into the fresh air and sat on the patio. Everyone kept their spirits up and did their best to be positive, although this news had clearly shaken everyone. One of the producer/writers had to take a walk by our pool for a moment, his tough exterior dissolving privately into tears. There was sensitivity to the situation as we brainstormed on how to proceed with all of this, what everybody felt . . . what we wanted . . . what they wanted . . . and where we go from here. When all had been talked about, Patrick stood up,

  “Well, let’s call Sony and A&E,” and he clapped his hands together like a coach.

  “Now?” they were a little taken aback.

  “Yeah.”

  “Why not?” I said. This was not exactly something we wanted to hang on to into the next week. Time in every way for us was at a premium. And there was no time like the present.

  I got a speakerphone and pulled it outside, and once everyone was on the phone, Patrick stood, pacing back and forth with positive energy, and he told them the news. Bob DeBitetto at A&E in New York remarked later about the trepidation he felt going into the call, “When it’s eight o’clock at night and ten to twelve people want to get on the phone with you, you know something big is happening. But I had no idea . . . no idea that this was what it was going to be.” They were shocked. Needless to say, Patrick’s health scare made for many future phone calls between all. And I have to say, Sony TV and A&E’s reaction was amazing. They reacted like human beings instead of businesspeople, and they decided to hang in there with Patrick. They were going to wait and not make any decisions until we saw how he responded to treatment.

  Patrick still wanted to do the series.

  Do you know how crazy that might have sounded to people who knew even the least bit about pancreatic cancer? But he was not about to plan a future that was dictated by cancer, a future in which he had already given up. He was determined that he was going to go on and live his life, and cancer was not going to tell him how to do it.

  It’s a fearful thing, facing cancer, but Patrick entered this fight with dignity, courage, and strength. Donny remembers witnessing a phone conversation that happened that first week we were out of the hospital. As a formality, the doctor called us to confirm that the biopsy taken from his tumor during the ERCP was indeed pancreatic cancer. Of course we still held that little bit of hope that it would come back negative, even though we had been told not to hope. How could we not?

  We were gathered around the speakerphone in our kitchen to hear this news. Donny watched Patrick closely when he heard the results . . .

  “There wasn’t even a flicker of fear that crossed his face,” Donny said with awe, “He just straightened and said, ‘Well, I guess we move on to the next step.’”

  And when the doctors were describing treatments and procedures that would have scared other people witless, Patrick’s reaction was more one of lively curiosity, “Wow, that’s interesting. Let’s see what that does. What do you think, Lisa?” It was like he could step outside his body and look at it like an objective observer. He was interested in this fight. And I was equally engaged.

  —

  IT WAS tricky and difficult gearing our whole lives toward fighting this life-threatening disease. Functioning with this huge . . . thing . . . weighing on you at every moment of every day, and keeping it secret. Trying to act like everything was normal. It was cause for some additional pressure, and some great acting work from both of us. It was true that the fewer people who knew the better, but the effort of covering up something this enormous couldn’t help but take its toll. It was a good thing that, in general, Patrick and I loved to stay at home on our ranch, to ourselves. We couldn’t have done many public appearances, dinners with friends, and so on. It would have been asking too much of ourselves.

  It was only four weeks after Patrick was diagnosed that I was scheduled to fly a charter to Las Vegas overnight. I could have canceled, but no, if we were going to “act normal,” I needed to do it. I also would have left the charter company in the lurch if I had backed out at the last second.

  In the last six months I had gotten my commercial flying license and trained to be a first officer at Sun Quest, the charter company we kept our plane with. I was very flattered that I was considered a “good stick” (as they say), and I wanted to fly professionally, not as a career, but because I thought I might learn more, have more opportunity to fly with and learn from other pilots and, who knows, maybe I’d fly a jet someday, which was a dream of mine. Okay . . . I loved to fly. So I flew the trip with our friend Yann, whom we’ve flown with many times. When we landed in Vegas, Yann suggested we stay by the airport.

  “No, no,” I said, “Let me call some friends . . .”

  And soon we were checked into Planet Hollywood Hotel and Casino and I was looking out the enormous windows of the same suite that Patrick and I had stayed in just months before when we attended the opening of that same hotel and casino. My whole being felt like one, big, giant ache. I wondered what the heck I was doing there. What was I doing there without him? The view was fantastic, the suite was fabulous, and so silent. All I wanted to do was cry. I hadn’t really gotten the chance to cry yet . . . but I couldn’t. Yann’s room was next door, and if he heard me, he’d wonder what was so terrible that I would be uttering these awful sobs. What could be so terrible? I had miscalculated. Why in the world would I want to be away from Patrick’s side, even for one night? I couldn’t wait to get home. And I never booked another overnight charter again.

  —

  OUR AIRCRAFT was a Beech King Air 200, and we loved it. And even though Patrick was fighting pancreatic cancer, he still wanted to fly and did so when he felt good and sharp enough to sit in the left seat (the pilot’s seat). In order to do so, he’d carefully forgo any pain medication the whole night before we went up to Stanford. He’d fly up, and then I’d fly back because by that time he’d had quite a dose of drowsy-making nausea medication along with his chemotherapy. (It could be pretty interesting when he talked on the radio after all that medication! His responses were very, very slow.) I was afraid that it might be that some of the drugs Patrick was taking would disqualify him from flying entirely. But I couldn’t find it in my heart to bring up this possibility and risk having his flying privileges taken away. Patrick was a man with a lot of pride.

  I talked to another pilot friend about my dilemma. “How in the world could I ask him not to fly?” I asked. He looked at me and shook his head, understanding only as a guy can, “You can’t.”

  When Patrick flew, he was a safe pilot. And that was the important thing. I also was always there with him in the cockpit. Later on, he would be the first to decline piloting the plane when he wasn’t feeling well enough. And this was going to happen more and more . . . but for that time, we worked together like a great team. And flying was infinitely more comfortable for Patrick than driving in a car and being jostled around. The jostling and bumps hurt him. So being able to fly up to Stanford and land at the Palo Alto Airport, passing the handsome California mountains and Pacific Ocean on our left, the snowcapped Sierras on our right, with the beautiful San Francisco Bay sparkling ahead, was an incredible convenience and luxury for us. And it was a bonus to be doing something that we loved together.

  We weren’t always so amiable and tolerant in the cockpit during our flying careers. We could both be strong-willed, and perfectionists at times. When we were first flying, we’d get into huge arguments! Oh, my God! People had mentioned the problems that husband and wife might have flying to
gether but . . . give me a break! I remember when I had been flying for two to three years, still fairly fresh as a pilot and doing quite well. I was flying in the left seat (captain) of our twin-engine Cessna 414, and Patrick was in the right seat (copilot). We were approximately three thousand feet in the air over the coast of Ventura, California, when an argument broke out. He was telling me what to do, I was telling him, no. And it escalated to where I pushed the yoke of the airplane away from me and said, “Okay! You fly the airplane!” He pushed the yoke away also, “No! You fly the airplane!” Me, “No, you fly . . .” You get the picture. I finally got sense enough to realize that no one was flying the airplane and that someone better calm down and take the wheel.

  A couple of days later, when we were calmer, we sat down together and I said, “You know . . . this arguing in the cockpit is terrible. We can’t keep doing this. It ruins everything. It makes me not want to fly anymore.”

  “I hate it, too.” Patrick nodded solemnly in agreement.

  And then I had an idea, the only one I could think of. “Hey! How about this? I love flying. You love flying. Why don’t we just enjoy ourselves . . . in spite of ourselves?”

  Patrick had just the glimmer of a smile as he considered that thought.

  And that’s what we did. For years and years after. Not that we didn’t sometimes have disagreements. But they were disagreements, not full-blown arguments.

  —

  “Airplanes can take a lot of turbulence. Usually the pilot falls apart long before the airplane does. Just hang in there and fly the plane.”

  —Captain Frank Kratzer

  When you’re flying an airplane, situations like heavy turbulence, thunderstorms, or emergencies can be frightening. One thing that I like and find demanding about flying is that there’s no place for fear in the cockpit. An airplane isn’t like a car. You can’t just pull it over to the side of the road while you figure things out. When you’re in an airplane, you need to think. And fear can paralyze you, much as it can in a situation like we were in now with Patrick’s illness—one that made us confront life and death on a day-to-day, sometimes moment-to-moment basis. On top of that, you’re getting so much new information. You’re learning how things work in the body, how the treatments work, why other treatments don’t work, and getting a handle on the doctors’ and nurses’ everyday lingo. It’s undoubtedly overwhelming for anyone. It’d be easy to freeze, it’d be easy to run away, to turn it over to someone else, or simply to fold.