Worth Fighting For: Love, Loss, and Moving Forward

by Lisa Niemi Swayze; Lisa Niemi

  WE HAD ONE new, beautiful foal. Our good fortune wasn’t over yet . . .

  Three days later, my beautiful mare, my princess Bint Bint Subhaya, foaled. We had another baby! Again, we were present for the birth. Bint Bint had worked so hard during the delivery that several times she emitted a long, high-pitched whine, a sound I’d never heard a horse make. I looked at her afterward and said, “Okay, I’m not going to make you do this again.” This beautiful foal was weak, and we stayed with him for hours before he was stable enough to nurse on his own. In the meantime I’d milk the mare and feed the foal, and Patrick and I took turns trying to guide him to his mother’s teat once he was on his feet. But fortunately the colt was healthy. As the vet said, “Just like people, some are born a little weaker than others. Won’t mean anything in the long run.” And it didn’t. He was healthy, and, like his mother, he was exquisitely beautiful, and every bit as sweet.

  The previous year, we had bred three of our best mares, and now, we had witnessed two births. What luck! Two down, one more to go. And this little filly was due in four weeks.

  —

  WE SAT in the treatment room at Dr. Hoffman’s in Los Angeles. As well as Patrick was doing, it was a battle to manage things like his intense abdominal discomfort, painful bowel movements, and gas. The fluid buildup in his belly had to be drained once, and now twice a week, along with the continuing weight management. We were talking to our favorite Harley-riding nurse, Jose, asking the same questions about these issues. We never seemed to tire of repeating the same questions over and over. Maybe because we never got the answers that would really make a difference. So we just kept picking at it.

  Patrick finally sighed with exasperation, “Well . . . what do the other patients do about this?”

  Jose looked a little surprised and then said simply, “Patrick . . . We don’t have any pancreatic patients that are doing as well as you.”

  We fell silent. What a thing to be reminded of. And we had to absorb that information. It was quite sobering.

  A couple of weeks later that July, Patrick was grappling with his symptoms and fatigue when he told me he didn’t feel good enough to make his chemo appointment that day. This wasn’t the first time that he hadn’t felt well enough to go, but it was the first time that I conceded to let him stay home and rest. Sometimes I felt like a Nazi drill sergeant, ordering him to do the impossible, dragging him to appointments when he didn’t feel up to it . . . It seemed to be part of my being his caregiver and coach; knowing when to push him, when to be back off, when to get pissed off, when to hold his hand, when to praise. I knew him pretty well, and we wanted the same thing here, so we put all our efforts toward that. But up to this point, I had never, ever let him miss an appointment, because I was afraid that if he missed it, something would happen and it would be a long time before he was able to get treatment again. The thought of that terrified me for him. It’d be like being in a war and deciding to take a day off. But I decided not to be the drill sergeant for one day and rescheduled the appointment.

  “A week from tomorrow? You’ve got to be kidding!” I protested when I got the scheduler on the phone. She explained it was the very earliest she could get him in. “Ah!” I sighed, “Okay, okay, we’ll do it a week from Tuesday.”

  I told Patrick his appointment was rescheduled for the next week. He crinkled his brow, “Really?” But then nodded, still electing to stay home.

  The next Tuesday came, and we sat in the treatment room at Dr. Hoffman’s drawing blood to run labs before treatment. The results came back. Patrick’s hemoglobin reading was low. “I’m going to give you a transfusion,” Dr. Hoffman said. “Have you been feeling tired lately? More than usual?”

  I looked curiously at Patrick, who shrugged and said, “Probably.” He was fatigued much of the time. If it was more so than usual, I couldn’t tell.

  “We’ll give you a transfusion,” Dr. Hoffman said, and nodded. “It should make you feel better. And then you can come in on Thursday for treatment.”

  Ugh. Two more days.

  We knew that some patients got to the point where they needed transfusions to keep their HMG up, but Patrick had yet to need one. This would be his first.

  Our other regular nurse, Pia, was there, and another male nurse whom we liked very much. They gave Patrick a “talk through” about the transfusion and what to watch for. We nodded and settled in for the two hours it would take for the blood to trickle in. Just like they said—piece of cake.

  When it was finished, they unhooked Patrick and were wrapping things up to send us on our way when, all of a sudden . . .

  Patrick started to shiver.

  We all looked suspiciously at him.

  He took a breath and stopped for about three seconds and then started to shake harder than before. Patrick just looked a little helpless, like I don’t know what’s going on but I can’t stop it. He’d seem to calm down momentarily and stop shaking, but then started shaking again, looking worse every time until he was shaking continuously. We were now, officially, extremely worried. The nurses were running around. “Looks like it might be a bad reaction,” Pia said. She took his temperature—it was elevated. The male nurse looked into Patrick’s eyes, and they were rapidly becoming unresponsive, disoriented-looking. I held Patrick’s hand tightly, putting my trust and confidence totally in the highly skilled nurses who were attending to him. They called Cedars-Sinai to alert them of a possible incoming. We were moments from rushing him to the hospital when his symptoms calmed . . . he stopped shaking . . . his temperature went down . . . I breathed a sigh of relief, but the nurses were not thoroughly convinced.

  Patrick sat for a minute or two, then nodded tiredly. “I think I feel all right now. Let’s go home.”

  We let a few more moments pass by . . .

  “Do you want to check him into the hospital?” the male nurse asked me.

  “Uhm, I don’t know . . . He seems fine now,” I said uncertainly.

  “You’re just around the corner from the hospital now.” Pia shrugged.

  “I feel fine, let’s go home,” Patrick said. But he still looked a little worse for wear.

  “Uhm, uhm . . .” I stalled. I couldn’t make up my mind. It was a big deal to take him to the hospital. We’d have to take him to the emergency room first, and we probably wouldn’t get home until the next day, if we were lucky. But if I took him home and something happened, it was a long fifty-minute drive back.

  I took out my cell phone. “Hold on a second, let me make a call,” and I excused myself and walked out of the room. Outside the door, I walked down the hall and called Maria, my sister-in-law, and told her what was going on.

  “Lisa, I would take him to the hospital,” Maria advised, “You’re right there. You just don’t want to take any chances.”

  I nodded. That’s all I needed to hear. I went back into the room. “Let’s head to Cedars.”

  Pia nodded happily, and the male nurse almost sighed audibly in relief. “I really think that’s the best thing to do. Look . . .” and he shone a little light in Patrick’s eye, “This is what really worries me . . .”

  Even though Patrick seemed completely stable, his eyes still looked a little spacey. I nodded at the nurse.

  “Pull your car around and we’ll meet you,” he said. “You can follow us over there. I used to work at the ER, so I can usher you in the back.” He winked at me.

  It sure helps to know somebody!

  Driving the short twelve blocks to Cedars-Sinai’s ER, Patrick tiredly questioned whether this was what we really wanted to do. I was totally committed now and told him, “I’d rather be safe than sorry.” He didn’t offer any further argument. And again I realized that I never packed an overnight bag to leave in the car like I said I would. About the time I was thinking this, Patrick started to shake again. He swooned against the side of the passenger door, and rapidly got worse than he had been before. Going to the ER was really looking like a good idea now. We only had four more bl
ocks to go.

  By the time we wheeled him into a room in the ER, his temp had skyrocketed past 104, which is as high as that paper thermometer goes. His pulse was elevated, and though his eyes were open and blinking, he was not cognizant. At all. He couldn’t even say his name, and I doubted that he knew where he was. It was unbelievable how fast all of this happened. And I was thanking Maria, the nurses, and the gods above for putting us just around the corner from Cedars when all this started happening.

  In addition to other things, the ER nurse immediately started breaking and putting ice packs under his armpits and around his neck and legs to try to bring down his dangerously high temperature. I attended to keeping these ice packs fresh as I picked up my cell and called, I don’t know . . . Maria, Dr. Hoffman, Dr. Fisher, or all three! I needed information and guidance about what was happening.

  I was terrified. Helpless and struggling not to be helpless. Panicked. But again, I had learned to keep all those emotions in check. I knew that people could die from things like this, and that knowledge made me feel like I was being beaten up with a rock tied in a sack. Bruised and aching. But I persevered. I was going to hang in there no matter what. And to anyone walking in, I looked concerned, but calm and present.

  After two, maybe three hours, Patrick’s temp had come down to 102; he’d stopped shaking, though he still was not fully aware.

  The staff was apologetic—the room they managed to get for him was on a different floor than we had had before. Was that all right?

  “That’s fine!” I readily agreed. “Is the staff good on that floor?”

  “Very good,” the nurse said.

  “Let’s go.”

  As he lay on the gurney, I fixed the blankets and his baseball hat over his face to disguise him as they rolled him through the halls to his new room. The two Asian nurses that looked like adorable sisters and would be attending him on this floor greeted us. They set him up in the bed, hooked up his fluids, and we organized the room.

  “His temp is at 102 now. It needs to be checked every twenty minutes,” I told them. “Are there ice packs available? Make sure they are nearby. If his temp goes over 104 again, we need to get ice on him immediately. He may have had a bad reaction to a blood transfusion, so no blood transfusions. If it becomes necessary, we need to order blood that has been washed, and we should allow for some extra lead time for that. I know that you have a doctor on the floor here. There is also a doctor on call, his name is Dr. Decker, if you have any questions . . .”

  I let loose this litany of instructions and information. I’d come a long way since we started this journey. And at this point, I certainly wasn’t afraid of stepping on any toes. It would be thirty minutes to an hour before we saw a doctor, and I wasn’t going to wait until then to make sure Patrick was okay.

  One thing I knew for sure. I was grateful to be out of that freeeezing ER! I had elected to wear a cute little flippy skirt that day. Never, never go to a doctor’s appointment in a cute little summer skirt!

  The sun went down. And everything seemed to be settling in for the evening. Patrick was awake and he had been stable for several hours. He didn’t remember the emergency room or what had happened. But all seemed fine now. It could be a rare, bad reaction to the transfusion, or it could be an infection. We’d know more in the morning. I set up my cot in a cramped corner of the room and told the nurses to please wake me if there was any problem during the night. And after watching a little TV together, I kissed him goodnight and climbed beneath the sheets in my little summer skirt to slumber.

  —

  IN THE middle of the night, I heard vague stirrings in the room. I opened my eyes. In the darkened room, I could see the nurses fiddling with something on the other side of Patrick’s bed, like they were trying to figure out how to hook some machine up. I could see their body language—it said “urgent.” I tossed off the covers and hopped up from the cot.

  “What’s going on?” I asked.

  One of the nurses turned to me, an apologetic but worried look on her face. “We hooking up this monitor. His heart rate is very elevated.”

  “What’s his temp?” I asked.

  “Temp is 102.5.”

  I nodded. I was still trying to get my bearings and clear my brain. I looked at Patrick to see if he was sweating, how hot he felt, his pulse . . .

  His heart rate was very rapid indeed. Just how much, we would all find out soon. The nurses stepped away from the monitor. In iridescent green at the top, it read—

  160.

  A normal, resting heartbeat should be between 60 and 100 beats per minute. The monitor started counting up . . .

  165 . . .

  The glowing green numerals would settle, then tick upward again . . .

  170 . . . I was panicking about 160, and now it was . . .

  175 . . . But we weren’t done yet . . .

  185.

  197 . . .

  And it hovered between 197 and 188 and wouldn’t budge. I was fearful. Could someone survive with their heart beating that fast? This was not a bad reaction to the infusion, this was an infection, and Patrick’s heart was going into hyperdrive trying to fight it in an attempt to deliver more blood to his body and vital organs. The nurses were doing whatever they could, and I was asking questions. I can see why doctors and nurses sometimes ignore the patient when they’re dealing with things like this—I was doing the same thing. This was turning into an emergency, and all I cared about were the numbers, his symptoms, and what we were going to do about it. I don’t remember if Patrick was conscious, semiconscious, or neither. The doctor on call came in and hovered over Patrick and the monitor, talked to the nurses . . . he was a young man and appeared to be very capable and experienced. The electrocardiogram spit out its reading. Not only was Patrick’s heart rate high, the beat was irregular, tachycardia arrhythmia. This didn’t make me feel any better. I remembered that arrhythmia was the first sign that our beloved Ridgeback, Gabriel, was in mortal trouble.

  I asked how dangerous Patrick’s heart rate was, and the doctor assured me that his heart could beat that fast for two or more hours and he was not in immediate danger. He nodded toward me to step outside the door with him. Once outside . . .

  “This looks like an infection. I need to talk to you about his Health Directive.” He asked seriously, “Does he have a DNR on him?”

  My brain froze . . . DNR . . . Do Not Resuscitate . . . I kept talking, “There has been some talk about DNR, but . . .” I stammered, “I don’t . . . I don’t know if this qualifies.” Does this qualify? Is this a DNR situation? It couldn’t be possible that Patrick would be on a DNR now! “I mean, yes,” I tried to sort it out loud, “there’s been some talk, uhm . . .”

  I was confused. And this was too important. I took out my cell and punched in Maria’s number. She answered sleepily but she was alert.

  “This sounds treatable, Lisa,” Maria said. “I wouldn’t put him on a DNR. This is a reversible situation . . . and Lisa, make sure they are very clear about this. No gray areas.”

  “I understand,” I said. “Thanks. Thanks so much.”

  I hung up the phone and turned to the doctor, “Since this is a treatable situation I want you to do everything possible to get him well. No DNR.”

  He nodded, “I think we should move him into ICU.”

  —

  IN THE intensive care unit, the bright young lady checking us in asked the same question about the DNR. She looked concerned. Let’s face it, Patrick’s file did say “Advanced Pancreatic Cancer,” and unless you lived under a rock, you already knew this. He was famous. There were the dire tabloid headlines at the local grocery store . . .

  “No DNR.” I shook my head. “Of course if his heart fails or he stops breathing, I may need to change that. But you’ll ask me first, right?”

  “Of course.” She nodded affirmatively.

  I repeated, “Since this is a treatable and reversible situation I want you to do everything in your power for him.�
� She seemed to be a little unsure. I remembered Maria saying, Make sure they are very clear. And then I found the magic words.

  “He’s . . . he’s doing well. He’s responding to his treatment. And his disease is under control and stable,” I said. “Do whatever you need to do for him.”

  She smiled, like they were the best words she’d heard all day.

  Thinking through this DNR issue felt like walking through thick mud. It was as if it were a physically arduous task for the muscles of my brain, a task it had never been trained to do. Of course I wanted them to do everything possible for him to live. But what if he did have a heart attack or stopped breathing? I had to follow that line of thought if I wanted to be prepared! If he had a heart attack, they would have to take great measures to get it started again. If that failed they would rush his weak body to surgery, where his compromised immune system was prone to infection, already had an infection, and even if he survived the operation and painful recovery, he could not go back on treatment for two months while the disease took the opportunity to wreak havoc on him. His last days would be full of unnecessary suffering. It can be very difficult to know when to fight with everything you have, and when it would only be cruel to do so.

  The way things were now, we were still in the fight! We were in uncharted territory once again, but there was hope in supply.

  Patrick was given various drugs, and his heart rate came down to 164, but no lower. His doctors were frustrated. But it’s a careful balancing act between not enough of these particular drugs and too much of them. For me, 164 was not a comfortable number, but it was a s#*tload better than 197! With his heart rate at 164 beats a minute, Patrick was more alert, and patiently going with the flow.

  “How do you feel?” the nurse asked him.

  “Okay. I’ve got stomach pain, constipated, but what else is new,” he said. Then, “What’s going on?”

  I stepped forward. “Your heart rate has been very high.” Obviously he hadn’t been aware last night when we moved him to ICU. “Really high. We moved you here last night.”