Worth Fighting For: Love, Loss, and Moving Forward

by Lisa Niemi Swayze; Lisa Niemi

  So we wrapped up the interview with filming some of the horses in the barn, and then Patrick swung Barbara in his arms and dipped her just like he had in his interview twenty years ago. And everyone left. I worried how the whole interview would come out once it was cut together. Both Patrick and I were very vulnerable. There was enough footage to do a lot of things. It’s difficult to reveal yourself in such a raw and unadorned way, and then leave it in someone else’s hands. But it was done now. I just had to trust all would be well. And if we were going to trust in someone, we had picked a good someone.

  —

  AFTER THE interview, Patrick and I headed back into the house to settle in, talking about how everything had gone with the interview, about the fly that zoomed around Dr. Fisher’s head, and what we wanted to do with the rest of the day. I went to the kitchen counter to make a cup of tea, and stopped in puzzlement . . . Where’s the coffeemaker? I looked around, and there was no coffeemaker to be found. And then I remembered hearing Barbara saying loudly, “Is someone making coffee?” and then hearing some scrambling. Turns out that Celinda, upon hearing this, was so horrified that she rushed into the kitchen, yanked the machine’s plug out of the wall and . . . rushed out of the house to silence it. We found our coffee machine the next day in our little guesthouse out back, sitting on a table looking very lonely and left out.

  —

  SINCE PATRICK was no longer in the clinical trial at Stanford and the drug Oxaliplatin was readily available everywhere, we were able to move his second dose of Oxi down to Dr. Hoffman’s in Los Angeles. This would be much more convenient than traveling up to Stanford every week, and you’d think we’d be celebrating. But no change in treatment comes without some hesitation and fear.

  We had wrung every drop of good we could out of the PTK study and it had kept him alive for months. But the cancer had finally gotten wise and become resistant, and we were now forced to move on. The new drugs, Oxaliplatin accompanied by Xeloda, were an unknown to us, and there was always the possibility that Patrick would not respond to them. We were starting to tick off the few choices that were available to him, and even the choice to “go” with the Oxi and Xeloda seemed a bit arbitrary and unscientific for my liking. It was like pin the tail on the donkey. The choices were the Oxi and Xeloda, Abraxane, Tarceva, and then FOLFOX. FOLFOX is a combination of folinic acid, 5-FU, the intravenous form of Xeloda, and Oxaliplatin. Beyond that were drugs that, for the most part, hadn’t worked very well at treating pancreatic cancer. And the list we did have was questionable as to whether they were aggressive enough to target his disease. We went with the Oxaliplatin and were warned of the side effects—extreme cold sensitivity. On the Oxi, even the cool night air can make you feel like it’s freezing your throat and lungs, and you do not reach into the refrigerator for something without putting on gloves first. But this was more acceptable than the other drugs, which would cause him to either 1) lose all his hair, or, 2) break out in a severe, acne-type rash. Since he was planning to promote his series next month, we figured the cold sensitivity was the way to go. And that’s how we arrived at that decision.

  I didn’t like moving on to another drug. I wanted Patrick to be around a long time and had no interest in exhausting our options, and moving to step two was a step in that direction.

  But we were to take a little detour first . . .

  “I’m feeling all this pressure in my stomach,” Patrick reported to Dr. Hoffman, “like I’m getting topped off again. And I have to sleep practically sitting straight because I’m so nauseated.”

  Dr. Hoffman immediately sent him over to Cedars-Sinai to get an upper GI series done. Patrick swallowed some X-ray dye and the radiologist took X-rays of his stomach and small intestine to see how fast the dye was moving through his gut and whether there were obstructions along the way. They found that the stent at the exit of his stomach had narrowed by 80 percent. Of course this was causing a delay in everything emptying out.

  The doctors were always amazed that Patrick was so tuned in to his body. And they attributed it to his being a dancer and keenly aware of changes in his body. I, however, was also able to confirm his condition before he got the X-ray, because when he burped it had that “garbage disposal” smell!

  It was only two weeks since we had gotten home from Chicago before we were back up at Stanford taking a closer look at this new obstruction. Patrick was increasingly nauseated and vomiting and hadn’t eaten in two days. Not good. We knew we were heading into another complication, but stayed calm and focused, like we were gunfighters with steady hands.

  There was another CT to help determine where the obstruction was. And in the scan we got an unexpected good piece of news. We found that the disease was stable again. Yes! Even with only one treatment of Oxaliplatin, it showed it was having some good effect. It was also determined that Patrick needed a gastrointestinal bypass. He was scheduled for major surgery the next morning.

  It’s called an exploratory laparotomy with gastrojejunostomy. But gastric bypass is much easier to say. Patrick’s pancreatic mass had grown to obstruct the first portion of his small intestine (called the duodenum), and this was not allowing food to exit from his stomach. So, what the surgeon would do during the gastric bypass was take the downstream, second portion of the small intestine (the jejunum), and bring it up to the stomach where the surgeon would then create an opening, and attach it to this jejunum so that food could pass directly out of his stomach, thus bypassing the obstructed exit. Basically, it’s like having a stuck door, and the solution being to simply cut a hole and put another, new door in. We were checked into the hospital and careful attention was paid to our privacy and security.

  And once more, I was sleeping on a rollout cot. On a practical note, I was learning how to pack better, getting the right amount of function and comfort. I also brought movies for us to watch on my laptop. I’d climb into bed with him, and we’d snuggle side by side, feet raised and laptop on the tray table. It was comfy! Dr. Fisher came in one evening and saw us in the dimmed room, perched side by side watching a film, and said, “Ah, drive-in movie!”

  Our room was in the cancer wing. It was the first time we were not in the general population. It was a little creepy for me when I ventured outside our room to get something to eat; there were more visitors hanging out in all the patients’ rooms, much more so than in the general areas of the hospital. It just had a different vibe, and I found myself unsettled by it. There were emphatic signs in front of a few closed rooms stating that you MUST DISINFECT HANDS BEFORE ENTERING. I was puzzled that it was so important to clean your hands . . . before you could see what was behind the door. Almost like it could be the Man in the Iron Mask, or some spooky version of Hannibal Lecter that was shut away behind the door. When I walked through this hall, I had a strong urge to take Patrick out of there. And then I realized why. Some of the patients there were dying from cancer. That’s why the increased number of visitors, the decorations that attempted to make their rooms look friendly and homey. Part of me was perturbed. And I had the nonsensical thought, Why did they have to put us here? Don’t they know that he doesn’t belong here? But the other part of me was aware that this feeling I was having was me not wanting him to have cancer, me wanting to stave off death as long as possible. And when I reached our door, we had our own sign taped up. It said, CHECK IN WITH DESK BEFORE ENTERING. But it was for a different reason: We didn’t want everyone knowing who he was and coming in for a quick peep!

  The surgeon who would be performing the bypass was Dr. Norton. His reputation had preceded him and we felt we were in good hands; we loved him, in fact. But any surgery was scary in Patrick’s case. Most frightening of all was that chemotherapy lowers your immune system and makes you more vulnerable to infection. Also because of this, Patrick would have to be off his treatment for six to eight weeks while he healed. Pancreatic cancer is so aggressive, I fretted that it would have a chance to start wreaking havoc in his body in that time. We had been warned that th
is bypass might happen, and we were just now putting together what the ramifications of this surgery might mean to him. But like Patrick said to Barbara Walters, “It’s not the cancer that kills you. It’s all the things around the cancer.” And he couldn’t be left like he was now.

  Patrick came back from surgery, and I helped them transfer him into the bed. All had gone very well, and now it was a matter of healing. And it was the first time since he was diagnosed that I’d seen him really stoned on the pain medication. He was saying some pretty funny stuff, like when the nurse was trying to make sure the equipment at the foot of the bed was working properly. Patrick starting talking out the clear blue, telling her, “You’re not going to get anything done that way. Everything’s got to move. It’s totally blocked.” The nurse and I looked at each other quizzically. Patrick was more emphatic, “You have to move that truck out of the way first. Just move the truck first. It’s blocking everything!”

  The last time I’d seen him that stoned was way back in New York City when he was probably around twenty-four years old. He had had oral surgery, and someone needed to pick him up.

  “I can get home by myself. I’ll take the subway at Columbus Circle,” he told me.

  “No, I’ll pick you up. It’s no problem,” I said.

  I showed up on the curb on our Honda 750 motorcycle we had named “Buford” and waited outside the building. I was glad I was there to get him. In all the hustle and bustle of people walking on the sidewalk, I spotted Patrick, just kind of slowly, aimlessly wandering, looking up at the buildings, at the people, with a silly grin on his face. I waved him over, and he grinned at me and ambled over, taking about five minutes to put his helmet on. I stuck him on the back of the motorcycle and drove off. How he didn’t fall off, I don’t know. But we made it home safely.

  And now in the hospital room at Stanford, he was giving instructions in a perfectly normal voice and talking about all sorts of things, none of which made any sense at all. I started to laugh, and it felt so good. And the nurse stifled a chuckle. Patrick looked at us, and our giggling only made him more insistent that we listen to him. He was so funny, but he was starting to get mad, feeling he was being made fun of. So, with great effort, I managed to start nodding and pretending I was listening seriously to what he said. It’s all he wanted. But I was still smiling on the inside. He stopped talking and closed his eyes to rest.

  After a few days, when all was going according to plan and he was healing well, I packed us up to fly back home. The whole ordeal turned out to be a blessing in disguise. While Dr. Norton was “in there,” he confirmed that Patrick had a large abscess attached to the outside of his stomach. He was able to drain it, and Patrick was put on antibiotics. I was curious about this abscess but didn’t think much of it until Dr. Fisher told me how lucky we had been to find it.

  “If the abscess had gone a few more days, Patrick would have been a very, very sick man. Dangerously so,” he told me. “It’s really amazing that he wasn’t already ill.”

  Once again Patrick had dodged a bullet. Angels were definitely watching over him. And guiding all of us.

  Snowed in at Rancho de Dias Alegres in New Mexico.

  Chapter 13

  DARK NIGHTS, GRACED WITH SNOW

  WE WERE JUST a few days away from Christmas when we got home from surgery at Stanford, and I made impromptu plans to have my family over to our house on Christmas Eve, and Patrick’s family on Christmas Day, like we always celebrated it. It was harder to organize because, up to this point, I had been able to run out and do errands, or whatever, for a few hours, leaving Patrick on his own. Donny was initially surprised that I could do anything. I supposed it was imagined that Patrick was something of an invalid. But he was active, completely capable, and thinking clearly. Well enough to shoot an entire TV series! And if something came up, he could always pick up the phone. But that was changing now. Postsurgery he was feeling quite weak, and it was hard for him to get around. He was also managing his pain much more with medication, and it made him cloudy.

  We were learning a whole new way of dealing with pain medication. Pretty much his whole life, Patrick didn’t like taking any kind of painkillers. I always thought it was a little ironic that he could drink himself into oblivion on occasion, but refuse to take half a Vicodin when his knee swelled up like a Zeppelin. But, like he said in another one of his famous magazine quotations, “I’m a contradiction, and it’s okay!”

  As I mentioned previously, he didn’t take any pain medication at all while he was on the set of the series. And when he did, it was on an as-needed basis. That was wrong, we were now told. When managing this kind of pain and discomfort, you need to stay on the medication. You don’t want the pain to get out of control before trying to bring it back to something more tolerable. It’s much more effective to nip it in the bud before it gets going. This was completely against how we had approached it in the past, and it was a difficult transition for Patrick because, like I said, he didn’t like to feel he was relying on anything. He wanted to be able to take it or leave it, and staying on medication religiously made him feel a little like a victim and nicked his pride a bit. But we listened to this advice, and once Patrick decided he wanted the relief, we adapted to this whole new approach.

  Between the meds and his feeling frail, I didn’t feel comfortable leaving him now unless someone was nearby to watch him. What if he started feeling bad? Needed something? What if he got dizzy and fell? This amped-up concern made things more difficult and more draining. Not having the freedom to just run out to the grocery store brought an additional pressure. I started having to plan when I could take trips to run errands and take care of other crucial items. And when I had an extra body there to watch Patrick, I made the best use of that time to get things done.

  —

  AT TIMES, late at night on his own, Patrick couldn’t help but have some “dark thoughts,” as he called them. Privately, back in LA at Rancho Bizarro, he had pulled Donny aside . . .

  “You know I’m not going to beat this thing, don’t you?” he whispered in a low and confidential voice.

  Donny did his best not to be flustered and to react in a positive but honest manner. But his brother had just acknowledged what was probably the inevitable. And after a few quiet moments, they changed the subject.

  “And I could get hit by a car crossing the street tomorrow,” I’d say when the subject of dying came up with him (or anyone else). We’re all going to die. The problem was—when. My comment about crossing the street was an attempt to lighten the heavy weight of the subject. I knew I wasn’t going to get hit by a car tomorrow, I probably wouldn’t even be near a street tomorrow . . . but I knew Patrick had pancreatic cancer, and his life was in jeopardy.

  Patrick and I called ourselves “optimistic realists.” We weren’t going to give up hope that he could be the first to turn this thing around and thrive. At the same time, we knew the odds were highly in favor of the disease winning and taking him. “I do have this tiny bit of hope that I can really beat this thing,” he shared with me. And always when he said it, his face couldn’t help but be fill with emotion. This meant everything. It meant his life, and he didn’t want to lose it.

  He rarely talked about his “dark thoughts,” though. I wondered if that was because he didn’t want to upset me. Then again, we were so busy being positive that maybe we didn’t want negative thoughts to get too much of a foothold in our lives and start to tear it down. The tabloids were already negative enough, and they were killing him off every other week. We didn’t need more.

  I know Patrick fought to stay positive, and he did an amazing job of doing so. Along with pancreatic cancer can come depression. Who wouldn’t be depressed with a diagnosis that says your mortality card might be coming up? But pancreatic cancer can cause depression on a physiological level. But if he was suffering from depression, he was putting up a good show. And though it might have hit him in private moments and in some long dark nights, he would never let it
get the best of him. But I know it could be challenging for him.

  “How do you nurture a positive attitude when all the statistics say you’re a dead man?” he asked, as if challenging you for an answer.

  It’s a good question. And along with that question brought a hope, a fear and uncertainty that’s the hardest kind to face. And he navigated through all of those things with a tough realism, tremendous courage, and a fearless wisdom that I had never seen in him before.

  On the rare occasions that he did say something about his feelings, what was on his mind was so profound that to stand there and discuss it beyond his initial statement would be . . . anticlimactic. “Where am I going to go if and when I die?” “What’s going to happen to me?” When he said those thoughts out loud, it was like they filled the air with a weight that allowed nothing else in.

  My heart would just jump out to him as I listened to these uncertainties. But I didn’t know the answers either. I wished I did. Part of me felt that I should just go with some of the clichéd, tried and true answers that people give and seem to be very sure of, like, “You’ll be in heaven,” “Your body can’t contain the energy that’s you,” “It will take another form and you’ll be in this world again when you’re ready.” But I couldn’t find myself saying that stuff to him. I’d be, not lying, but making something up. I wanted to comfort him. I knew what I wanted to believe, but there was no way I could be one hundred percent sure. And I didn’t know how to say something that I didn’t believe totally without sounding insincere. I was very much like him in this regard. I’ll know when I get there. Otherwise I’m just guessing until then. I had to stay with what I knew was true. And what was true was that I understood his fear.