Worth Fighting For: Love, Loss, and Moving Forward

by Lisa Niemi Swayze; Lisa Niemi

  Patrick was very sick, and there was a very good reason why he was in ICU. I’d learned to be cool-headed, and I had faith that this infection would turn around like it had before. But I tell you . . . We had been warned from the beginning about how dangerous an infection could be to Patrick, and unlike how unimpressed I was last year, I’d come to respect infection as a formidable enemy. We did not want to mess around with these!

  One evening, a couple of days later, I stepped outside his ICU room into the bright, empty hall to call and check in with Dr. Fisher at Stanford. It was hard to find a place to have a private phone conversation. I didn’t want to do it in the room with Patrick and stress him when he should be resting, the waiting areas tended to have sad-eyed people waiting for God knows what, and it was a long way out of the ICU building to the outside, and even harder to get back in because of front desk security. I liked that security, though. It gave me confidence that no one was going to sneak in to find Patrick. So, the options for a phone call left me pacing the empty, booming hallway, trying to talk in a voice soft enough so as not to echo down the corridor.

  I asked Dr. Fisher what the future might hold, reviewing Patrick’s options, not only if he had a hard time shaking this bug he had right now, but if he did and became stable enough to resume treatment. I just wanted to be prepared. I wanted to be thinking ahead. And I think that, in a way, it was important to me that I was visualizing a future rather than being carried along into some unknown darkness.

  George restated the importance of not giving chemotherapy until all of the infection was gone. To resume chemo too early could, and would, fatally compromise his immune system. “It’d be like putting the nail into the coffin,” Dr. Fisher said. I assured him that I understood. (I was bold, but I was not trigger-happy.) And as we were wrapping up our update, he encouraged me to hang in there through this tough spot, and then he paused, before saying, “You know I really regret ever suggesting that Patrick might not make it when we first met,” he said sincerely.

  “You were being realistic,” I said, “and you’re not the only doctor that was being very blunt and honest about the situation.”

  “Well, I wish I never said it, I truly do,” he said.

  “It’s amazing how Patrick has really hung in there.” I nodded. “Amazing.”

  “Well.” Dr. Fisher’s tone started to brighten, “All I can say is . . . if I’d bet a six-pack of beer every time I thought Patrick was not going to make it, I’d be a very poor man by now,” and he added, “I just wish we had met at another time, we could have been really good ‘White Trash Buddies.’”

  It was funny, and I laughed. He said this because he shared a story with Patrick about a car he had that flooded when it rained, so he drilled big holes in the floorboard to let the water drain out. To which Patrick shared his story of how he had a DeLorean on blocks sitting in his driveway for two years, and that made us “Uptown White Trash.”

  And then Dr. Fisher said something that I’ll always remember. And I don’t believe I get this much credit, but . . . but it meant a lot to me . . .

  “And I just have to tell you, Patrick wouldn’t be alive if it weren’t for you. He would have never survived this long,” he said.

  —

  I REALLY appreciated hearing that. And if it really was true, I don’t think it would have been wholly because of the attention I gave him and his medical treatment. Partly, it would have been because he didn’t want to leave me. And I’m not saying that he couldn’t possibly bear to be away from me, and then again, that, too, may be true. What I mean is—sometimes I thought he might be staying for me. That he was fighting so hard so that he could do his best to “take care” of me . . . He knew that I crazy-beyond-anything didn’t want him to leave me, and I tried not to think about this too much—because I felt guilty that he might feel pressure, or feel emotionally blackmailed that he had to hang in there because it would hurt me too much for him to go. I didn’t want to see him suffer. But I still had that guilt card in my back pocket as part of my bag of tricks. And although we rarely spoke of it, both of us subtly knew it was there. I hoped I would always be reasonable about how I played that card. But I wasn’t going to throw it away. Because the truth of the matter was—I selfishly wanted him here with me.

  —

  OUR FOUR days at the hospital were not without some bumps and hardship. While there, we took the opportunity for some housekeeping items. He swallowed a tiny camera that filmed his insides while it passed through his stomach and intestines so we could figure out why he was having some bleeding in his intestines and stool. We attempted to fix the new portacath, which I hated because it wasn’t working nearly as well as the last one. And we installed an IV filter to prevent a blood clot from traveling upstream into his lungs, which was another thing that could prove fatal. And when he came back from the IV procedure and transferred from the gurney to the hospital bed, bright red blood gushed out from under his hospital gown, and my eyes went wide! Luckily, the experienced nurse hardly blinked, telling me this sometimes happens after an IV filter placement, and she went to get something to clean up. I was so glad she was there! Seeing that much blood gush out can be disturbing, to say the least. I felt like Patrick’s line in To Wong Foo, Thanks for Everything! Julie Newmar when Vida exclaims tiredly, “What fresh hell is this?”

  Five days at the hospital, and Patrick, once again . . . once again . . . beat the infection. We went home on August 18, Patrick’s birthday!

  On the way, I pulled over our pickup truck and jumped out to run into one of my favorite bakeries on Melrose Avenue and pick up a delicious chocolate cake to take home for a private celebration. Earlier in the month I had planned something nifty, deciding to find a Latin dinner club with salsa music and dancing. I even had a dress to wear from one of my shopping excursions. But as the days of the month wore on, it became clear to me that I might not be able to rely on Patrick’s feeling well enough to have a celebration. It was the first time that thought had come into my mind. And I didn’t like it. He had always been able to rise to any occasion . . . But I had to go with my instinct and cancel the big get-together. As it turned out, it was the wiser choice; our plans would have been canceled anyway by his hospital visit. Instead, Donny and I got to pick at the chocolate cake that of course Patrick didn’t want to eat any of. (It’s the thought that counts, right?) But all of us were rewarded by his being well and returning home victorious over another tough infection. And that’s a pretty nice birthday present when you look at it. A hard-earned present.

  Sheer stubbornness. It was hard not to take these victories personally. I felt like Patrick and I “willed” them into existence. And we’d wake up and celebrate each day. He’s still here!

  Each one of these infections had weakened him, though. I kept waiting to see him bounce back as strong as he had in the past. Just that summer, he had started to look and feel so good that we had even discussed the possibility of doing a second season of The Beast! And now, he was once again trying to “come back.” Only weaker and more fragile than before . . . I kept focused on his getting well enough—to give his body a chance—just another week or so—then we can bring out the big guns again and blow this disease away. Just another week . . .

  —

  ALSO, WHEN we got home from the hospital, a medical bed stood waiting for him in our bedroom. I had to finally order it—he was in serious need of it for his comfort, and it was going to make his life much easier. I also had come up with a solution to his problem with having the bed: I found a second-hand medical bed for myself. And I had it set up and nudged right next to Patrick’s, so when we climbed into bed we were in dueling electric beds, still sleeping next to each other. And like always, some part of us was touching the other.

  —

  PATRICK WAS back recording the audio book for The Time of My Life, which had been so rudely interrupted because of the last infection. When he had got back from the hospital, I wondered how he’d ever find the energy
to do more recording. And sometimes it would take half a day for him to get in there, but once he did, his performer’s adrenaline kicked in, and it almost took a crowbar to get him out of there. Which is pretty much the way he always did things, sick or well! But again, what was stunning was the transformation of his energy. Unless you’d seen it, you wouldn’t have believed it.

  “It’s Robert Johnson’s blues slide guitar,” Patrick enthused to the audio engineer, “It’s beautiful, huh? Here, play it, it’s got an incredible sound!”

  “Hello? Hello . . . ?” I was on the intercom upstairs in the house trying to cut into the conversation.

  “Hey Lis, what’s up!” Patrick said brightly.

  “Are you guys playing music?” I asked, dumbfounded.

  “Yeah! Matt plays and composes. We just finished two chapters, and I was showing him my Robert Johnson,” he said, “No pun intended.” He chuckled a little.

  I had sections to record also, and spent some time just sitting down there with them. It felt like we were a world away. Cancer was still there, and for the hours we were in the studio, it didn’t go away, but it sat outside the recording room door. And while we did the audio book, we’d take breaks and have some fun playing music together with Matt. Patrick and I shared a recording of Luke Reed singing “Spanish Rose,” one of Patrick’s recent favorites, Matt would play one of his upbeat songs on the guitar, and then, we’d break out into a loud, rabble-rousing live version of “Up Against the Wall Red-Neck Mother,” before getting serious enough again to actually record the audio book. It was hilarious! And we were all having fun. One night, Patrick didn’t stop recording until three in the morning! Matt later confided, “We were worried about pushing Patrick too hard.” He shook his head in amazement. “And here he is, and he’s going strong and it’s passing two in the morning. He’s putting me under the table. And I’m not the one who’s sick!”

  It was true “Patrick” style.

  Even more amazing, the days he spent recording the audio book, he did so with another infection brewing.

  One of our last photos taken together, August 2009.

  (Photo by Greg Gorman)

  Chapter 21

  THE LAST INFECTION

  THIS NEW GERM was fairly minor, but Patrick couldn’t have been feeling very well. Stenotrophomonas maltophilia, a type of bacteria. Dr. Hoffman put Patrick on the appropriate antibiotic. The fact that his health was undermined and he still put the hours in to record the audio book (over the course of three more long days) points not only to what a truly tough guy he was, but also to how he could downright transcend what was going on with him physically.

  As soon as the recording was done, Patrick retreated into the state he was in previously as his body fought the infection. He was very weak and put his hand out to steady himself against something when he walked. He was often uncomfortable, and his energy was very low, and Donny and I had begun to worry about his getting up and wandering around in the middle of the night, as he did often while we were both asleep. It was a big concern . . . there was the definite possibility he could fall and seriously hurt himself, or run into some other problems. He had already taken a spill, catching his foot on a step and hitting the ground pretty hard. Between the compromised strength and the medication, his reflexes were not up to par. I was trying to figure out how I could have someone watch him at night, but that was a tough one—whoever it was would have to sit outside our door and then follow him if he got up. It was kind of a creepy thought to have some unknown person sitting outside your bedroom door all night, and Patrick wasn’t going for it. Donny and I briefly discussed one of us taking the “night shift,” but then that would leave that person sleeping in the day when all the real work and our lives were happening. I just crossed my fingers and decided to go with the flow. If I really had to get some nighttime nursing care, I figured I’d know when it was imperative to do so.

  Frail as he was, I still held hope that he could stay well long enough to get back on treatment and turn his process to an upswing again. Miracles had happened before. And he had looked poorly earlier in the past year and bounced back amazingly. Angels were on our side. I wasn’t going to underestimate the possibilities. Every day could be, and was, like a new discovery. And I certainly wasn’t going to underestimate Patrick.

  We had been warned about those “rolling infections”—the infections that start to happen one on top of another and don’t stop—and I knew that Dr. Hoffman, Dr. Fisher, and our infectious disease specialist, Dr. Chung, highly suspected that this was what was happening with Patrick.

  Sure, he’d had quite a few infections in the last month or so, but he had recovered from them, right?

  Although these last ones . . . he’d recovered, barely. But that didn’t mean we were giving up. We were hanging in there.

  We duly noted the doctors’ concerns.

  —

  IT WAS right at this time that the worst wildfire in Los Angeles County history broke out. It was called the Station Fire, and was described as an angry fire. It started at 45,000 acres and within hours, grew to 100,000 acres as it headed toward a 160,000 total. Our ranch is backed right up to the Angeles National Forest, at the fire’s back door. People were evacuated less than a mile away, and large animal evacuation shelters were set up at Antelope Valley Fair in Lancaster, Pierce College in Woodland Hills, and then later, right down the street from us near Hansen Dam. With all the firefighters, roadblocks and equipment, it looked like an army had moved into our neighborhood, and we were living under martial law.

  In the last twenty years, our property had been threatened by fire a few times, but never by a fire this hazardous and large.

  We were in the middle of holding tight to Patrick’s health after this last infection. As positive an attitude as we had, the recent downturn in his health worked its nerve-racking concern on our insides. We were all fighting firmly to get him well and back on track. And Patrick was steady and unflinching. And along with these recent infections, other problems had been popping up along the way. Problems with his growing fluid retention, more blood clots, intestinal problems, the persnickety new port that was still not working properly . . . and more and more he was cloudy on his Dilaudid doses. It was challenging for me and Patrick and Donny. Very challenging. And with a dangerous fire nearby, I prayed that I wouldn’t have to evacuate the horses, especially because I had three small foals, one of them only two weeks old. Moving them in these circumstances could be very traumatic for them.

  Less than half a mile away now, several large horse facilities had mandatory evacuation. My brother Paul and I checked the fire’s progress several times a day to try to predict its immediate path . . . And to me at that moment, it just seemed beyond all comprehension that so much would be happening. My brain felt bruised, and I was living in a constant state of alarm and apprehension . . .

  Looks like there are fires coming from all directions. I just want to sit down on my haunches, cover my ears, and rock like a little child. Seems I have this idea in my head that as long as I can stand, as long as I can breathe, I can still carry on . . . I’m standing, I’m breathing. And yet . . . and yet . . . You give me focus. Don’t let me think about too many fires coming my way. And I can rally. I can do it again.

  September 2, 2009

  Luckily, I had friends step in to let me know I had their help if I needed it. There was Ame, whose friend had a trailer and had already been moving horses. Arabella, who was horse savvy and ready to run over and help at a moment’s notice, and Paul, who had the number of another horse mover . . . The fire raged to the second ridge of mountains behind our house, less than half a mile away from our backs. Firefighters parked at the end of the street outside our gate in case the fire spread down our hill, because if they didn’t catch it soon enough, it would be too late.

  Soot and ash covered everything . . .

  The metaphorical significance of devastating fires coming from all directions was not lost on me, although I’ve
come to believe that not everything has significance, that sometimes sh*t just happens. I had grown up always believing that this life somehow reflects back at you. That how you feel, what you are, is in the people, the things, the situations you see around you. It’s like Patrick used to say when he was practicing Buddhist chanting and when his life was awry, his altar was covered with dust, the greenery dead, and the water in the cup all but evaporated . . . “Well,” he’d say brightly, “if you want to know what my life looks like right now, all you have to do is look at my altar!” And now, I was looking around at my life, and it was on fire.

  Destruction was heading our way . . .

  I had also noticed that inexplicably in the last three months, trees on our property had begun to die. Trees that had been there since before we moved in over twenty years ago and had always been healthy. When I saw the first one start to go, I thought, Oh, she’s an old apricot tree. Apricot trees must die when they get older. But it wasn’t just the fruit trees. Three other trees started to die. And then more . . . until there were nine trees that had suddenly, mysteriously turned to dead wood . . .

  Was this reflecting mirror an image of my, or Patrick’s and my, life? It was not something I wanted to waste much time thinking about, but every time I looked out the kitchen window, there were those damn trees staring at me. If this was sending a message . . . between the fires and the dead and dying trees, it was giving a pretty good indication that my world was tumbling down. But I kept putting one foot in front of the other, and was still tireless. I had to take care of my Honey. And if I had to evacuate the mares and babies, I’d probably shed some self-pitying tears before I picked myself up and just got it done. My world was rocking, swaying under the pressure, but now was not the time to sob. I had come this far, and I’d be damned if I was going to let life break me.