Worth Fighting For: Love, Loss, and Moving Forward

by Lisa Niemi Swayze; Lisa Niemi

  And I am still cynical about some people out there. I’ve learned to be wary and try to protect myself from the ones who don’t believe that goodness really exists, the ones who don’t even feel it in themselves. And they are out there. Not everyone around us during Patrick’s illness always acted in a caring way. Some greed surfaced, and some people were more concerned about what Patrick’s illness was doing for them. But they weren’t the majority, and I don’t think they are the greater part of what’s out there in the rest of the world either. I just think that when they go around destroying things and hurting people they make a loud noise. I think the majority of people are good, decent, caring people. What a gift. To realize you live in a world with these kinds of people . . .

  Patrick and I felt empowered by these people who lent their support. And if prayer and intention could bend the universe, they all could. We could. And when we needed it most, their support gave us a kind of . . .

  Magic.

  And it was what we so needed. We needed magic to happen.

  Patrick was about to get his first set of scans since he started treatment. The results meant everything.

  Chapter 7

  IN GOD WE TRUST, ALL OTHERS BRING DATA

  Patrick at age thirteen or fourteen.

  ON APRIL 2, 2008, we flew up to Stanford for his first set of PET/CT scans since he started treatment two months before. We were escorted to various places on the Stanford campus, ending up in kind of a trailer arrangement on a circular drive outside one of the hospital doors for the scan. A PET (positron emission tomography) scan is not all that comfortable a procedure. They have to inject a radioactive material into your vein before they scan. That bothers some people more than others. For Patrick it felt awful. It burned. The first time he had one done back at Cedars-Sinai, he told me that he came very close to panicking; he thought he might be dying. Not a very pleasant experience for him. But he was going to do it again now and not complain. Are you kidding? We had spent the last two months in high anticipation of what these scans would tell us.

  After the scans were completed, Patrick emerged from the trailer, and Patient Relations escorted us to an out-of-the-way sitting room of theirs off a quiet hall. It was small but very comfortable. There was a TV there. I turned it on, changed one channel . . . turned it off . . .

  And we waited . . .

  After a long, long while, Dr. Fisher came in. He was nodding.

  And it was good.

  Yes . . .

  Dr. Fisher logged into the computer in the room and pulled up the scans. They showed that the lesions, or spots, on his liver had not grown and they were actually less active. The tumor on the head of the pancreas also did not show any new growth. With no more new lesions, no growth of existing lesions, and the PET scan showing an improvement in the liver, this was confirmation that the chemo was actually working well at controlling the disease. Controlling the disease. As far as pancreatic cancer is concerned, that spells SUCCESS.

  Patrick and I smiled and nodded, albeit briefly, as we received this news and we remained focused as Dr. Fisher showed and explained the scans. But inside we were jumping around with joy! When we were able to privately catch each other’s eye, it was hard not to be flooded with sparkling emotion. And in his eyes I could see him distinctly say, as if he had said it out loud, “Looks like I’m going to be around for a little while longer!”

  I was overflowing with happiness.

  This was all we needed to hear. We were still in the game. We just had to deal with the next problem that came up. But that seemed minuscule in comparison to the big picture.

  —

  DR. FISHER scrolled to another part of the scan. The good news was that the scans around the pancreas and liver were good, and . . .

  “Take a look at this,” Dr. Fisher maneuvered the image on the screen, “Here’s your spine, and this is your stomach . . .”

  He started scrolling down through the image, and farther down, and farther down. The bad news was that Patrick’s stomach was extremely dilated, enlarged. The tumor was obstructing the exit where the stomach empties out into the small intestine, and everything was backing up and stretching out his stomach. Patrick had been complaining for the last couple of months about the terrible indigestion he was experiencing, “I feel like I’m topped off!” he kept saying. This would start at the beginning of the day and get worse as the day wore on. He had started sleeping almost sitting straight up, otherwise he’d feel nauseated.

  He’d also burp frequently, which frankly didn’t smell all that great. I was flying the plane one trip with him next to me in the copilot’s seat and found myself trying to hold my breath. I told Donny later, and he concurred that the smell was not good but said, “I’ll take his bad breath any day. I’m just glad he’s here.” He didn’t intend it this way, but I felt pretty small. I mean, if I couldn’t take a little bad breath, how was I going to get through this thing? A friend of mine whose husband suffered with cancer mentioned how her husband had to endure extreme loss of bowel control, had to rely on diapers. I have a terrible gag reflex when it comes to vomit or warm poop. What if things got really bad and Patrick needed me? Was I going to be one those squeamish people you couldn’t rely on? Did I not love him enough? I chastised myself for being such a weenie and worried that I might not have the stomach for some things.

  The bad-smelling burps should have been a pretty good indication of the problem—it smelled exactly like the kitchen garbage. Yep, all that food and the protein shakes he was being so brave in forcing down to keep his weight up was just sitting there in his stomach, decomposing as it piled up, and blowing it up like a balloon! Of course some food was getting all the way through, but not much, and very, very slowly.

  Patrick was mighty pissed off that no one had figured this out before this. It had been terrible for him, “I can’t believe it. Why didn’t anyone check this earlier? Why?” he complained for days after.

  It certainly explained why he had been so uncomfortable. A stomach enlarging like that can push on other organs as it settles into your pelvis. Of course the whole time he was suffering, he complained little to moderately, and only on occasion. Patrick had a high pain threshold and could buck up when he needed to. For all he knew, this could have been pancreatic cancer pain. But now we entertained the thought that maybe he needed to complain a little more when he was hurting that much!

  In fairness, none of our immediate circle of doctors at Stanford had ever seen this happen in a patient who was responding well to therapy, and who looked as good as Patrick did. Dr. Van Dam called a GI colleague to discuss the situation and the colleague had indeed seen this happen, once before, in over twenty years of practice.

  They felt sorry for Patrick. “Poor guy,” Dr. Fisher said, shaking his head in dismay, “When I saw the scan . . . it’s no wonder he was so uncomfortable.”

  —

  SO THE bad news was that Patrick’s stomach was blocked and enlarged. The good news was, now that we knew what the problem was, we were going to figure out what to do about it. Right now.

  Within an hour or so, Dr. Fisher had organized a think tank of sorts in an out-of-the-way room at Stanford. We had Dr. Fisher, Jacques Van Dam, the surgeon Dr. Norton, and Albert Koong the radiologist all in the room at the same time. Patrick’s scans were up on the screen, and each was giving his opinion of the situation and what to do given Patrick’s current and unusual state. Each made suggestions and played devil’s advocate, bringing in new ideas, shooting holes in existing ones. Treating Patrick was not such a straightforward thing with pancreatic cancer involved. Listening to them, I was impressed and fascinated. I had always had something of an old-fashioned view of doctors—that they all knew what they were talking about, that they had the answers. And here I was listening to these highly respected doctors trying to figure out the best course of action. Trying to figure it out. It made me see how truly creative medicine is. How it’s not a cookie-cutter endeavor. Each person is an individua
l, different, and treatment has to reflect this.

  I also realized how important it is to have good doctors. The good ones know what it takes and are not afraid to think outside the box. They are like scientists with bedside manners. And they are smart, creative, and highly dedicated and responsible. In that room, I also realized that they can be wrong. They may not be remembering one aspect, one piece of the puzzle that could make all the difference. Or, they can be overloaded with work, or . . . they could just be having a bad day. Long-term treatment can get very complicated. It’s not a straight line. And you can find yourself getting into a lot of “chicken or the egg” discussions if you don’t pay attention.

  I realized that day in the room that I, Lisa, was a part of the doctors’ team. I was the one constant out of everyone. I heard everything, I had my big yellow legal pad, and what I knew, saw, and kept track of was invaluable in Patrick’s treatment. I saw later on, as I became more savvy about medical treatments and their associated lingo, that I could catch mistakes before they happened and fill in details that made a difference in the next decisions.

  At Stanford, in that “think tank” room, I was just getting the idea of how important my role could become. That it could be even more than administering and keeping track of medications and calories. I was being let into the circle. And I was there to be of service to our team and to play as important a part as anyone else.

  —

  VAN DAM placed a stent to open up the blocked connection between the stomach and the intestine, and we kept our fingers crossed. There was always the possibility of complication, such as the stomach returning to its natural contractions and motility. And in addition to medication to help the process and give Patrick more immediate relief, Dr. Van Dam put in a PEG tube or G-tube, basically punching a hole through the left middle abdomen into the top of the stomach and then placing a tube there. Through this tube Patrick could drain off excess material in the stomach instead of waiting for it to pass through his newly improved, now unblocked exit. The tube coming out is fairly smallish, and you tape it up when you’re not using it. Later, you can get it cut down and have a button put on so it’s not dangling. It’s not as bad as you think. Really. And it’s a very simple procedure. That is . . . unless you’re Patrick.

  “I feel like I’ve been shot!” Patrick groaned, “Literally shot!”

  “He’s got a lot of muscle,” Van Dam said with wide eyes, “I had to go through a very thick layer of muscle.” It was like he just discovered that Patrick was maybe superhuman after all. Just like you’d think a movie star would be. Bigger than life with superpowers, not just a normal, fragile person! But I guess superpowers come with a downside. Because Jacques had to punch through this wall of muscle, it made the procedure site very painful for Patrick.

  It may sound funny, but it was truly miserable for Patrick. I’d never seen him in this much constant pain. Unfortunately we made the mistake of not going home right away. A mistake because if he was hurting this much on the first day, the second was going to be even worse once the anesthesia wore off.

  We had to laugh about what it’s like when people get shot in the movies. “Yeah,” Patrick said, grimacing through his smile, “Someone gets shot in the abdomen in a movie and then, by the next day, they’re up and running around. I don’t think so. If you’re shot in the stomach, you ain’t going nowhere!”

  But we gathered him up and we bravely set off for home. Every little movement, every little jerk of the car driving him back to the airport was agony for him. It was very rare to see him as uncomfortable as this. And it took almost two weeks for it to feel better.

  But he loved that PEG tube.

  I knew he would. He figured out how to use that thing to its optimum and became a master at it. He’d even adopt a dance pose, an arabesque into an elongated penché, in which you raise one leg behind you and lean your torso over forward as your leg goes higher. He’d do this when he wanted to get every last drop he could out of his stomach.

  —

  PATRICK HAD the curious ability to look at his body in an objective manner. For instance, if he was going to dive off a cliff into a lake, like he did on our honeymoon as we camped out on Lake Travis in Texas, he’d look at the height, figure out his rotation, gauge his trajectory over the rocks below, review how he wanted to hit the water—and then execute a beautiful swan dive. Of course it was beautiful. He had total confidence in his calculations. He knew his body could do what he asked of it. And of course it was going to work.

  Many times he put himself in what looked like peril to other people. He would just scoff when people expressed concern. Many times I begged him to back off of doing something. But it wasn’t because I didn’t think he could do it, it was because if something did go wrong, or his or someone else’s timing was off, the physical ramifications would be severe. But he was never thinking about failing; that notion did not exist for him. Not until many, many years later when he came off his horse when he was filming Letters From a Killer. He was galloping on the horse bareback, the horse zigged, he zagged, and there was an oak tree in the way . . . he broke his femur in what could have easily been a fatal accident.

  That Letters From a Killer injury hurt his confidence for some time. He hated it. He believed as his character Bodhi believed in Point Break, “Fear causes hesitation and hesitation causes your worst fears to come true.” And suddenly he was feeling fear. He proved that he could overcome it later on by jumping on one of our spirited Arabian horses in an open field in New Mexico and running off on her—no saddle or bridle, nothing. Just free and galloping in the middle of four other running horses. Now, was that showing the best judgment in the world? Probably not. But if there was a flaw in his thinking, it wasn’t about his ability, talent, or timing. It’s just that sometimes he forgot to use his full wisdom. Ya know? But still . . . still . . . I can’t help but admire someone who just wouldn’t be squashed. He was going to go “full out” no matter what anyone ever had to say about it. And wouldn’t let anything stop him, let alone a little fear.

  Also, being a dancer enhanced this ability of his to meet challenges. In so much of dance, if there wasn’t some kind of “mind over matter” attitude, there would be no way your body could do some of the things you asked of it. There are things that your body simply was not made to naturally do. And how do you do it? You visualize, you “feel” it, and you jump in and do it. Patrick danced, and he did athletics and stunts his whole life with a high-school football knee injury that plagued him at every turn. But it never stopped him. There are other dancers who do the same. I’ve seen delicate-looking girls with abscesses on their feet put on pointe shoes and go dance onstage—and smile while they’re doing it. You learn to ignore discomfort, even pain. You learn how to let your adrenaline kick in and help you through it, and know that on the other side, eventually, hopefully, it will be better. But you don’t let it stop you.

  I think my background in dance helped me also because, although I might feel squeamish in some areas, I had a perspective on pain and discomfort similar to Patrick’s. I didn’t panic. I already had a good idea of his pain tolerance and knew not to baby him, until it was time to baby him. There’s a kind of clinical way dancers have of looking at our bodies. We deal with physical problems calmly and professionally. And we think it through.

  Patrick brought this calm determination and this “mind over matter” attitude to battling his disease. And he approached his whole treatment and every procedure as if it were an adventure. It was like his body was his, and my, personal science project; it’s just that the stakes were very, very high. Higher than they’d ever been before. Which only made us work and concentrate even harder.

  —

  AS WE were pushing through this new territory, the inexorable drive to keep breaking my own barriers and keep learning continued. I got to redeem myself after the bad breath comment. We had been instructed to keep an eye out for swollen legs and shortness of breath, which may indicate a blood cl
ot forming. Pancreatic cancer loves to make blood clots. And a week later, there it was—swelling in his left leg. A visit to Mark Taper Imaging and one ultrasound later confirmed the existence of a clot, or DVT (deep vein thrombosis). Patrick was put on the blood thinner Lovenox. This is given in a subcutaneous shot (just under the skin, usually in the abdomen) twice a day.

  Okay, now . . . I have a real “thing” about needles. Needles freak me out! And suddenly I’m being asked to give Patrick shots twice a day? Our main nurse in LA, Jose, was going to teach me how to do it. Even gave me a little rubber pad and a syringe and needle to practice with. And I practiced over and over and over, along with watching the instructional DVD that came with the Lovenox package. When it came to real human flesh, it was a different story. The first time, I poked Patrick, “Ow!” I immediately pulled the needle out.

  Patrick exclaimed, “What are you doing? You pulled it out!” He was looking at me like I was a fool.

  Jose shook his head, “Naw, that’s not good. You’ve got to throw it away and start with a fresh one.”

  “I’ve got to throw it away?” I asked with dismay.

  Jose and others had been filling me in on the fine points of keeping things sanitary, something that’s crucial when dealing with someone who was as vulnerable to infection as Patrick was. My mom had been an excellent nurse, and many of her cleanliness habits transferred to the home, so I already had a head start. Jose instructed me that I couldn’t set the shot down after I’d unsheathed it, couldn’t touch it to anything, and . . . couldn’t stick it in and pull it out and stick it back in again. Okay! I threw the shot away, which probably cost fifty dollars, and coming as I did from a family of six kids with two working parents and having starved in New York as a young dancer, throwing away a fifty-dollar syringe . . . hurt. I was determined to do it right the next time.