Worth Fighting For: Love, Loss, and Moving Forward

by Lisa Niemi Swayze; Lisa Niemi

  And Patrick was still going to deal with life on his own terms.

  —

  THE STATION Fire was in its eighth day, and two firefighters had lost their lives. The blaze was only 20 percent contained, and we were far from being out of the woods yet.

  Patrick had an appointment at Cedars-Sinai to help drain off the fluid that had built up and was putting pressure on his abdomen and making it hard for him to lie down and breathe easily. This fluid stuff is so crazy—it’s a vicious cycle where your body thinks it’s dehydrated, so it produces more fluid, but veins start to weep, and you try to trick your kidneys into thinking you’re hydrated so it stops producing fluid, and we find out that all along it was never going to get better because of Patrick’s disease compromising the function of his organs. There. Aren’t you glad you didn’t ask? Anyway, Donny usually took Patrick to these paracentesis appointments, or “Tummy Taps,” as I called them, but recently I had started not feeling comfortable being away from Patrick’s side for too long. The health situation was delicate, and I worried what might happen when I was gone. I didn’t want to take any chances. Every time I left the room, I stopped to tell him that I loved him, and kissed him or squeezed his hand. But today was not the day to take him, the fires were too close, and Paul and I needed to stand guard in case we had to start moving horses with only a moment’s notice. I was grateful that Donny would drive Patrick in to his appointment like he had before. I trusted his excellent care unquestioningly.

  They had gone, and I was keeping track of the news on the fire and catching up on little things. It was only an hour or so later when Donny called . . .

  “Lisa?” he began, “We’re here at the procedure center and Buddy started having rigors.”

  I jumped up instantly, “Really?”

  “Yeah,” he continued, “he’s shaking pretty badly. And he doesn’t look too good.”

  “Stay right there,” I said firmly, “I’ll call the doctor and get him checked in right now. I’ll call you right back, okay?”

  “Okay,” and he hung up.

  I called Dr. Hoffman, told him what was going on, then called Patient Relations at Cedars to alert them to the fact that Patrick was going to check in immediately. I called Donny back . . .

  “Arrangements are being made to get him a room now. So, just hold on there,” I assured Donny.

  “Okay, we’ll do that,” he said tensely.

  I couldn’t believe the timing of this infection blowing out like this, and marveled out loud to Donny, “God, what are the chances that he’d already be at the hospital when this starts happening?” I had a rush of sweet relief, it was great luck that he was already there. And I took that as a good sign.

  “How’s he doing?”

  “He’s feeling bad, and he’s shaking a lot. I’ve got him in a wheelchair, and we’re off to the side here. With lots of blankets on him.”

  “Okay, keep an eye on his temperature. Don’t let him get too hot.”

  I quickly threw together my overnight bag (yes, I still hadn’t packed a ready-to-go bag to leave in the car) and headed to the hospital. Before I left, I made sure my brother Paul had all the phone numbers of people who could help him move the horses if needed.

  Back at the hospital, nice as Donny is, he was getting irate. It’d been an hour and he was still standing in the small room at the back of the Procedure Center with a disoriented, hurting Patrick next to him in a wheelchair. He finally lost it and stepped out into the pathway of everyone, “HEY! ONE HOUR AGO I WAS TOLD MY BROTHER NEEDS TO BE IN INTENSIVE CARE. THAT MEANS HE NEEDS TO BE IN INTENSIVE CARE NOW !”

  That got their attention, and Patrick and Donny were personally escorted to ICU within minutes.

  I drove out of the gate of Rancho Bizarro and past the encampment of firefighters, tents, trucks, and evacuation horse shelters in Orcas Park, and jumped on the 210 freeway headed west. I looked back at the flames licking Tujunga Canyon near us and the ridiculously large clouds of threatening smoke that billowed up to twenty thousand feet in some places. I was leaving it all far, far behind. If the horses had to be evacuated, it was out of my hands now. And I trusted those who would take care of it.

  —

  THE RAGING infection, the alarming heart rate . . . Ditto . . . He goes through it all again. And like before, a couple of days later, he’s stable enough to move into a regular room. Except the infection isn’t resolving. The cardiologist changes his medication, trying to calm his still erratic heart. The portacath that was so fickle is pulled out, since it was a possible source of infection again, which puts Patrick on a regular IV in his arm, which will be much more of a problem to maintain than his last picky port was. An appointment is set up to install a Plurex, a kind of semipermanent opening via a tube so that we can drain off the fluid build-up, which is getting constant. I pay close attention to instructions on how to do the draining, what to do with the fluid, and I’m worrying that this is one more possible source of future infection. I’m thinking of the future . . . but another part of me is worried about something else . . .

  “You know,” I was sitting with Patrick in his room, “we had just gotten out of the hospital and I never got you a birthday present. Can you think of something that you would want?”

  I could see Patrick thinking. His energy was minimal, but he was giving my question dedicated attention. After a moment, he spoke in a soft and slow voice: “A GPS.”

  I wasn’t quite expecting this.

  “A GPS?” I confirmed.

  “Yeah . . . one that we can put in the car,” he said.

  I nodded. But, where were we going to go, what were we going to be doing that we needed a global positioning system? I didn’t want to be negative, but I had big doubts that we’d be taking off to parts unknown.

  I did open my laptop to take a cursory look for where I could buy one . . . but didn’t go any further with it.

  It was a first sign for me.

  —

  I WAS afraid. Afraid I was at that “point” now. He wasn’t improving and appeared to be declining more than ever. He was so weak it was difficult for him to get out of bed at all.

  And I started to think a terrible thought . . . maybe he’s not getting better. For the first time, I questioned if I was being optimistic . . . realistically optimistic about his getting better, or if I was in denial. I was carefully trying to take the pulse of the situation . . . I had always promised myself that when and if the time came, I would let him go and not make him suffer. The situation had to be beyond hope and there had to be no way back. Patrick and I have had many animals, beautiful and loved animals that we had to nurse through sickness. It took us a while, but we learned that to keep them going long after it was their time to go was cruel. As heartbreaking as it was, we knew we were thinking of the animal when we let him or her go, rather than thinking of ourselves. As painful as it was, it was an act of extreme kindness and love.

  Was I at that point? Things were not looking good. But I wasn’t sure. I wasn’t convinced . . . so I hovered silently in that difficult place of questioning the situation, and myself.

  On that Friday, Dr. Geemee Chung talked to me about his blood work and the unresolved infection. It was not an upbeat conversation. There was yet another bacteria under the current one, she informed me.

  It looked like indeed this was the “rolling infection” they had talked about. The evidence was beginning to be undeniable.

  “I’m afraid it doesn’t look good.” She was somber.

  I nodded. And I was feeling desperation creeping in. “Give him something to treat the new infection also?” I asked. “Why not just give him everything you can. What’s it going to hurt?” I think I knew that this was our last shot.

  Geemee nodded in agreement, and together, we resolved to wait until Monday to see what transpired.

  Give it one more chance.

  —

  THE WEEKEND was hard and mind-numbing. Every time he moved to get out of the bed, we sc
urried to make sure he was supported. When we first moved out of ICU into the regular room, they had asked me if Patrick was a “fall risk.” If so, they would put a yellow band on his wrist that alerted the nurses. I had always said “no” on every previous hospital visit. But this time I had to say yes. And when Patrick woke up in his new room, he lifted his arm, saw the yellow band on it, and turned to me and whispered at me painfully, like I was some kind of traitor . . .

  “What are you trying to do to me?”

  I knew that he felt as if I had taken away some of his power. That I had just made him into someone who was a victim and helpless.

  I could only reply, “I had to . . .” And I felt helpless.

  I hadn’t wanted to, but I didn’t feel I had a choice. I had to be honest. And honestly, at that point I was more afraid of his falling and seriously injuring himself than I was afraid of hurting his dignity.

  What could he say? We were on the same team, and he let it go. And softly dozed back off.

  —

  SINCE THE last hospital visit, he had become less and less lucid. I attributed this to the wrong doses of Dilaudid, and was always jumping up and bossing the nurses around about what dose amounts he needed programmed in his hospital medication pump. But this was different. He was not always coherent, even when his doses were right. Instinctively I knew it must be connected to the disease, but it wasn’t until much later that I learned that the disease’s effect on the liver builds up toxins in the body, and these toxins were affecting his brain and causing confusion.

  So, sometimes he was lucid, and sometimes you didn’t know what was going to come out of his mouth, and sometimes he was unresponsive. Donny and I figured Patrick knew something was up, though, as we went into that weekend . . . He looked at the pumps and antibiotics hanging high above him, following their tubes down and into his arm, and said in a low, distrustful voice, “There’s some bullshit going on here . . .”

  And while I was helping him into the restroom with all his medications and tubings, he had been frustrated with me for the last couple of hours: “Why haven’t you gotten President Barack Obama on the phone yet? It’s a matter of national security!” He was getting very upset, “You have to understand, I have important information, it’s the only thing that will help divert a national disaster! I need to talk to him immediately!”

  I was panicking. I didn’t want to agitate him further by saying, “Hey, Buddy, you’re talking crazy stuff. So shut up.” I found the answer. I said, “I know. And we’ve put a call in to him. We’re just waiting for him to call back.”

  He nodded and was able to relax after that.

  —

  THROUGHOUT THE weekend I hoped against hope that the antibiotics would kick in and somehow start booting these infections out of his body and off the map. Come Monday morning, there was no visible change in Patrick’s condition when blood was taken from his IV and sent off to the lab.

  It was awfully quiet . . . Or was that my imagination? The TV was going, meals were being served . . . but it was quiet. No one was rushing back with the lab tests. And I was not on pins and needles waiting to find out the results of his blood test like before. I already had the sinking feeling that it would show what the doctors were afraid of.

  And that afternoon, Dr. Hoffman and Dr. Chung came into the room. I didn’t want to discuss anything in front of Patrick, so we stepped out into the hallway, and Geemee and Hoffman sent the nurses away from the little ministation outside our door. They spoke in as discreet and private voices as they could, since we were standing in a small alcove, open to the rest of the big hospital hallway. Out of habit, my eyes darted around to make sure that there was no one near to overhear or watch us.

  And I knew what they were going to say . . .

  “I’m afraid we’re at that point now,” they said gravely and with compassion.

  I confirmed with them that, absolutely, without a shadow of a doubt, there was nothing more we could do. I asked about the blood results. I asked about his CA19-9. I felt hot, hot tears well up into my eyes, and I pushed them back. I didn’t want to start crying and not be able to stop. And I had to agree . . .

  I had to agree . . .

  I had to agree that this was the end.

  —

  THERE IS nothing more horrible than letting go. That day had come. The day that I promised myself I would do if we came to it. But what was terrible to bear was that the decision to “let go” was mine.

  Realistically, I didn’t have a choice. Had to let go or it would have shredded my heart. As it was, my heart was shredded anyway. Except I was left with the nagging, disturbing thought that my timing was wrong, that I should have found a loophole. That I should never have let him go. Never given up.

  “Pull the plug,” you hear on the television programs when all hope is gone and the decision is made to take the patient off life support. In real life, families and loved ones have to say this all the time. And it doesn’t matter whether there’s a Health Directive, a piece of paper, stating the patient’s last wishes clearly, you feel like you are the one giving up. Like God deciding who will live and who will die. The one who pushes “the Button” that sets off mass destruction. And there is guilt. Even though you are acknowledging the situation and doing your best to act with compassion and wisdom, you feel guilty.

  We are taught that as long as there is life, there is hope. And dying is about breaking the rules. We don’t prepare for this. It goes against our nature. Letting go is about experiencing harsh, harsh loss, before the harshest loss of all comes. When you think about it, what greater loss is there? Death is the ultimate failure. And letting him go, knowing he was moving into Death’s arms, I felt like I had failed. The only way I could possibly bear it was to keep reminding myself that this was the act of love I had promised. This wasn’t about me . . . this was about love. My love, that stood outside as its own entity, its own body, its own city. And I had to let go, and I had to surrender to my love.

  (I never wanted him to go . . . Did I mention that?)

  And as we wrapped up our conversation in the hallway, they had to ask me. And I nodded . . .

  “Yes . . . yes . . . Put a DNR on him.”

  Within a few, very short moments, the purple Do Not Resuscitate band was on his wrist.

  And we were now not getting better. We were dying.

  Chapter 22

  ONE MORE DECISION

  A self-portrait taken in our first New York apartment,

  four months before we got married.

  I CALLED DONNY TO let him know what was going on. I guess I hoped he’d make me change my mind, like, “Don’t give up yet! Did we think about . . .” But he didn’t.

  I called Maria. I was still making sure . . . making sure . . . Also I now had another decision to make. “I need to decide if I’m taking him home or not. The infection is not resolving,” I told her, keeping my voice steady.

  “Oh, dear,” she said, “What’s his CA19-9? Did they say?”

  The CA19-9 is the blood test that roughly measures how active the tumor is. When Patrick first started, his number was 1,240. Just five months ago it was 2,000. And now, “156,000,” I reported.

  I heard a momentary but meaningful silence on the other end of the line. Then she murmured, “That’s awfully high . . .” The cancer was taking over.

  Patient Relations came by and hung big signs on Patrick’s door warning that no one was to enter without authorization. I had let them know that a couple of days ago, some staff from another part of the hospital came by to visit Patrick. I loved these two people, and they had been good to us during our visits, but as they were standing at the foot of the bed, I knew that word was getting around the hospital about how bad Patrick was looking. As they talked, I was smiling, but I was thinking to myself, “They’re here because they think Patrick is going to die and they want to see him one last time!”

  And now I was protecting Patrick in a different way. I knew that information was spr
eading. I was vigilant at his door. I started to worry and think that maybe I should push my cot up against the door to sleep at night lest someone sneak into the room and take a photo of Patrick.

  I got private security to stand outside the door. This was something we generally didn’t like to do, because it usually drew more attention to the area, but I couldn’t take any chances. No chances at all. Patrick had fought this battle so valiantly and with such dignity, I wasn’t about to risk his being degraded to a deathbed photo or description. That would happen over my dead body!

  Back on that Monday, when the DNR was put on Patrick’s wrist, Dr. Hoffman had asked me if I wanted to take Patrick home or stay in the hospital.

  I had never been faced with a question like that and my mind felt paralyzed. “I don’t know,” I said. “Uhm, what do you think? I don’t know . . .”

  “It depends on your wishes . . .” Dr. Hoffman was being sensitive.

  I don’t know . . .

  “Some people want to go home and some don’t,” he continued. “Much of the time we recommend staying in the hospital. Not so much for the patient, but it’s easier on the family . . . it helps to distance them a bit from the process. And they’re not burdened with a lot of the care . . .”

  I don’t know . . .

  “I need to think about it,” I managed to say out loud.

  You know, there’s the “die at home with your boots on” mentality, and that’s very romantic. But this is the real world . . . and the real world is not so romantic and pasteurized . . . I needed to think about it.

  Back in the room, I asked Patrick if he wanted to go home. But he didn’t understand. I leaned over, put my arms around him, and smiled. “I love you,” I said.