Worth Fighting For: Love, Loss, and Moving Forward

by Lisa Niemi Swayze; Lisa Niemi

  During his illness, time seemed to expand for me. It had a different timbre . . . It ticked but didn’t tock, and it moved ahead as fast as my thoughts could take me backward. What did a day mean? Nothing. Two days? It’s only time, and it doesn’t do anything. But . . .

  . . . What does the thought in my head feel like? A kiss on your lips? A stroke of the skin on your arm. The light coming through the window just so? These things mean more than time. And are the only things that make me real.

  I was becoming startlingly aware of what was real in my life. And it had nothing to do with the future and nothing to do with the past. Also, in the prologue of the book, I wrote that I was always afraid I wouldn’t have enough time . . .

  . . . that I’d run out of it. That I wouldn’t have time to do all the things I wanted. Now I’m seeing each minute that passes as a victory. As something I’m proud of. It’s like I can gather all these minutes into my arms as if they’re an enormous mass of jewels. Look what I have—another moment!

  How could you not love someone with all your heart if it’s only today, or even this moment that you might have that pleasure? Then . . . adding another day on to the joy you already feel with this person just adds more pleasure on top of pleasure.

  I try to remember that now. When I look at the sky, my friends, animals . . . It’s hard to remember that kind of happiness. No, let me put it this way: sometimes as humans, we find it hard to hold such happiness. But I try.

  Chapter 15

  ABRAXANE—THE BREAST CANCER DRUG

  Tina naps with Patrick.

  AMAZINGLY, ALL CONTINUED to go according to plan. After three and a half weeks of checking blood work and two CT scans to track the improvement in his lungs, Patrick was ready to start treatment again. And it was a good thing, too. He was feeling more fatigued, and the results of his CA19-9, the blood test that helps measure the activity of the tumor, had started to rise again, indicating that the disease had started to grow and we needed to stop it. Just in time, Patrick was back in the saddle to ride that “chemo-pony” again. This time he was on the drug Abraxane, in combination with its trusty sidekick, Gemcitabine.

  “Abraxane, it’s the breast cancer chemo!” Patrick loved to tell anyone who wanted to know. He found this information interesting and just a touch risqué, a fun piece of trivia you might mention over a glass of wine and hors d’oeuvres.

  The medical profession had found that this drug also had some favorable effect on pancreatic cancer, and it had always been on our list of our alternative options. Although he had had a pretty good result with the Oxi back in the beginning of December, Patrick had voiced his displeasure with the side effect of intense cold sensitivity. I wanted to stay with the Oxi. I mean, it worked, right? But his doctors reasoned there was no harm in giving Abraxane a try, and it was possible that the side effects would be more tolerable for him.

  With every passing week on Abraxane, Patrick’s CA19-9 numbers recovered dramatically, and his scans showed immediate improvement. It was what we needed. But it seemed to be taking a long time for him to feel better. He had always been phenomenally fatigued for a couple of days after any of the treatments he had, but now it seemed to take longer, if he recovered at all. He also had more nausea and vomiting, in addition to numbness in his fingers. But the CA19-9 numbers and CTs were tantalizingly encouraging, to say the least.

  —

  BY THIS time in his treatment, we were beginning to feel like old pros. It’s amazing how fast we can adapt to difficult situations. I was now taking care of Patrick’s treatment in an almost, not routine, but . . . automatic way. I didn’t have to think things through so much, I just got up and did them. I had come to expect a certain level of alert activity from myself and I was acquiring some of the calm, cool ease of experience. And I didn’t panic when Patrick transitioned to a pain pump that he could carry around while it automatically delivered his Dilaudid dose, and the initial programming was too high, so high that Patrick got overdosed. Leaving nothing to chance, I loaded him up and took him to Dr. Hoffman’s to confirm that this was what was wrong and not something else. And once it was confirmed that it was the Dilaudid, and there was no need to panic, I took the opportunity to happily chat with Dr. Hoffman about other treatments and tests . . . while Patrick sat glazed-over nearby in his chair, barely ambulatory or even able to sit up straight! Like nothing was out of the ordinary . . . Nothing was “routine,” of course. But that in itself was routine. You expect the unexpected, and then you start to get an idea when it might be coming around the corner.

  Every aspect of Patrick’s care was important, and Donny and I were very careful to do everything “right.” There was his treatment, cleanliness and guarding against infection, balancing medications, and nutrition to keep him strong enough to fight this thing. I did my best to make no errors. One or two small mistakes could compromise him. He had to stay well and strong so that he could get better.

  As always, eating was a continuing problem. He needed to consume a thousand to fifteen hundred more calories a day than a normal person since the cancer was eating what felt like the lion’s share of Patrick’s nourishment. The catch is that pancreatic cancer destroys your appetite. Obliterates your taste buds. Crazy, huh? The cancer makes you not want to eat, while it’s consuming all the protein and nourishment in your body! What a recipe for disaster. Patrick was diligent about trying to eat enough to maintain his nutrition and energy. But it was hard and an uphill battle every day.

  When Donny moved in, he suggested some alternative protein powders for shakes, since his brother was bemoaning the lack of variety. I walked over to a double door cabinet and swung the doors open . . .

  “Let me show you what I’ve got,” I offered.

  The supplements practically spilled out of the cupboard, and I started to explain the various packages . . . Donny looked at the piles of different supplements in varying flavors.

  “Oh,” he said, “I had no idea you’d been through so many. Never mind.” He grinned.

  “And then I’ve got some stuff in this basket here . . .” I reached up and took down a big basket I had hung from a beam in the kitchen, “It’s all high-quality products, please help yourself to any of this stuff. There’s nothing in here he likes.”

  Part of the problem, and what made my, and now Donny’s, job so challenging, was that Patrick would find something to eat that he loved. And he’d love it for about two days before he couldn’t stand it anymore, and then we’d have to find something else.

  In the last month, he was still feeling weak, and it was getting harder and harder to keep weight on him. In April, we put him on TPN, total parenteral nutrition, basically a big bag of white liquid hooked up intravenously in the morning and the evening that would give Patrick his complete nutrition for the entire day. We celebrated! No more worrying about his starving! Anything he ate during the day was now bonus food. I was so relieved. It took such an enormous pressure off.

  The downside of TPN for Patrick was that he was hooked up to this thing for at least two hours in the morning and two hours at night. I know he didn’t like it because it made him look like a sick person, and for four hours a day it was difficult to move around. But it wasn’t going to stop him. He organized a satchel that he could stuff the TPN in along with its accompanying pump, and throw it on his shoulder and go about his day as needed. He’d even be out in our horse corral hanging out with the horses with his TPN setup slung over his shoulder! This stuff was not light either.

  As with everything, we had to be very careful about contamination that could result in infection. TPN was particularly tricky. It has to be prepared fresh every time, and its preparation was complicated and opened several opportunities for something to get contaminated. Donny and I were serious about this undertaking and the hygiene. I sometimes felt like we were like mad scientists in our kitchen lab mixing this stuff up. There were large and small syringes, vials and packets we pulled from storage in the refrigerator, our particular
“mixing” technique, priming tubing and connecting it, and a pump to hook up and start up, all the while cleaning our hands several times with antibacterial gel during this process. As time went along, I starting getting fancy with my measuring technique, pushing air from the syringe into the vial and then letting it automatically pop back with the right amount of substance into the syringe. Unfortunately, on more than one occasion, this backfired on me, spraying my face with a load of MVI adult liquid vitamin! Ugh.

  You can’t say my heart wasn’t in it.

  —

  WEIGHT WASN’T the only thing Patrick lost during this period. Up to this point, he hadn’t lost his hair. It sure had thinned a lot more than he would have liked, but still he had his hair.

  “Now you’re going to lose your hair,” Dr. Hoffman prefaced Patrick’s first treatment of Abraxane.

  No ifs, ands, or buts. Patrick was going to go bald on this drug. And I wondered how he was going to take that. He’d always been so attached to his hair. Many times, I’d tried to get him to cut it and wear it shorter, and my best efforts were only mildly successful.

  “I can’t wear my hair that short!” Patrick would be emphatic. Why? “Because I have too many knots on my head! From getting hit, and stuff . . .” He’d brush his hand through his hair and then offer, “Here, you feel it . . . See?”

  And yes, there were knots. But not bad. Still, he would never budge. I think he liked the romantic look of longer hair, and this was how he saw himself. I know that until he was well into adulthood, he had a secret fear of going bald. He confessed this fear to me early in our relationship, listing the one man he knew of in his family who was bald and saying that he worried that he’d be next. Whatever it was about his hair, it was always a big deal. His hair had even been written about. And it was noted that in the eighties, Patrick wore his famous “mullet,” a hairdo that’s short on the top and long down the back. Patrick read that comment and sneered, “I’ve never had a mullet in my life!” And then he saw a photo of himself in the eighties and sheepishly grinned. “O-kaay . . . Looks like a mullet to me!” He also always loved to tell the story of how the U2 singer, Bono, told a friend of ours that he read somewhere that Patrick had actually invented the mullet, to which he said, “You tell Patrick that he didn’t invent the mullet. I did!”

  Patrick laughed when heard that and replied, “You tell Bono that it’s true—I invented it.”

  Of course both of them were making good fun of themselves. I mean, who really wants to take credit for a hairdo that looks pretty hideous now? When Patrick mentioned to the writers on The Beast that he might have to wear his hair shorter because of thinning, one of them made the unfortunate mistake of exclaiming, “But Patrick, you’re known for your hair!” Patrick was not amused.

  Many, many hours had been invested in styling his hair. Maybe I wanted him to cut it shorter just so I wouldn’t have to wait so long for the hair dryer to shut off. Anyway, hair had always been a big issue with him and he was sensitive about it. I worried that separating him from his coif would be like Samson losing his locks.

  “I always thought you’d look great bald. How could you not?” I enthused when he went on Abraxane.

  He just lightly sneered at my comment.

  I was protective of his positive attitude. I didn’t want a little thing like being bald to interfere with it. Who knows? Maybe he would look good.

  “At least you’re a guy,” Donny said at home. “I think it’d be a lot harder for a woman to lose her hair.”

  He knew that Donny was probably right about that. But again, no comment . . .

  Anyway, we waited for the right moment to just go ahead and shave the whole thing off. And that moment was pretty clear when his hair had thinned so much that anything would be better than the style it was in. So, I went up to the barn and got a pair of horse clippers with a nice, size-fifteen blade and went to it.

  I backed off and looked at him. And I thought he looked great. He was gaunt, you could see the stress of the illness on his face, his belly pouched out from accumulated fluid, and he complained that his ankles were swollen like a little old lady’s. But every time I looked at him, I thought he was beautiful . . .

  I don’t care if you have speckles covering your nose

  I don’t care that you’re shiny and funky with a big Buddha belly

  that I can rub and make a wish on,

  And I’ve been rubbing and rubbing . . . and forgot to ask for a thing.

  I don’t care that your legs are swollen and you look like an old lady

  I don’t care that you tell me that if you sleep wrong, the swelling’s going to your hips,

  or even up to your cheeks, to your jowls.

  And I want to rub your Buddha Belly,

  I’d finally find the wish that draws me there . . .

  and I’m rubbing & I say that I want you.

  My wish is that you want me too.

  Spring 2009

  I knew he wasn’t classic, buffed Patrick, but beauty truly is a curious and mysterious thing. When I looked at him, I still saw . . . him. And how can someone not look great when you look at him and you feel so happy?

  Unfortunately, the tabloids loved this new bald Patrick, but for an entirely different reason. Even one of our friends confided to me, “It’s the first time I saw Patrick and he looked like a cancer victim.” And yes, it’s true, bald is the classic cancer look. And his baldness made him look skinnier. Some of the most unflattering and ruthless tabloid pictures were taken during this time, pictures that made him look as horribly sick as they possibly could.

  But once again, I needn’t have worried how Patrick was going to handle all this. When the hair came off, there was no trace of vanity. And when the photos were published on the front page, he didn’t even get angry beyond a mere, rueful shake of his head. And he handled all of it the same way he handled his pain and discomfort—with a steady grace, strength, and dignity. And I was curious—was it really insignificant to him? Or, did he have to fight to maintain his dignity? Because the place he kept himself seemed not to be touched by such little sources of meanness.

  Chapter 16

  JUST YOUR DAILY 911 EMERGENCY

  The portacath. I took this picture to remind myself how to put it together.

  IT WAS THE last Monday in February, and I had Donny take Patrick to his chemotherapy appointment. It was the first time that I hadn’t taken Patrick to chemo. I always liked to take him to his appointment myself. But I made some lame excuse why I couldn’t go and amazingly, he bought it. After they drove out the gate, I checked the flight arrivals into Los Angeles, jumped in our pickup truck, and drove to LAX to pick up—

  Our new Rhodesian Ridgeback puppy.

  I had been working on getting a puppy since July of the previous year and had kept it top secret. I knew Patrick wanted another Ridgeback. We had lost our previous one, our beloved Gabriel, almost three years before, and in the last couple of years Patrick had asked about getting a new puppy. But I always balked because losing Gabriel had hurt so much and it was just too soon for me.

  He understood, would wait a few months and then ask again. And in the summer of 2009, after he had gotten sick . . .

  “I think I’d like to get another Ridgeback puppy,” he mused out loud and looked over at me.

  I’d say, “It’s still just too soon.” And I’d wince. But I was using my acting abilities to fib now.

  I was already making calls to look for a new pup. We had gotten Gabriel from a breeder in the U.K., and we loved him so much, I went back to the same breeder. Julie didn’t have any pups but helped me to find someone who did. And then I just had to wait for a litter to be born. And finally there were puppies born December 13. Julie helped me choose one. “He’s an absolutely stunning pup,” she remarked, “and he’s a big boy!” I couldn’t wait to see him, but I had to wait yet another twelve weeks until he was old enough to travel. After eight months of plotting and planning, our new boy was loaded onto th
e plane and due to arrive in Los Angeles.

  I excitedly went to the airport to pick him up and schemed how I would surprise Patrick. Luckily, when I drove back through our gate, Patrick was home and in the bedroom. Perfect! I would take the puppy around the house, and have him prance out in front of our windowed bedroom doors so Patrick could discover him!

  The puppy set foot out of our pickup truck and instantly made friends with our standard poodle, Lucas. This was going to make it easy!

  I threw a ball out in front of the door, Lucas went to retrieve it with the puppy following playfully, and they brought the ball back to me. I waited . . . No Patrick . . . I threw the ball again. And again they pranced out in front of the bedroom doors and came back to me . . . Nothing. I tried a third time, and a third time they pranced back to me . . . It wasn’t working! Damn.

  I finally walked around the house to investigate, casually checking to see if Patrick was still there. As I discreetly wandered by, he opened the bedroom door and stood in the opening, looking at me suspiciously. He didn’t say anything.

  “Hey! Did you see the dogs outside in the yard?” I asked innocently.

  “Yes. I did,” he said.

  “Well, did you notice . . . the puppy?” Glancing over, there was the puppy, just off to the side in the grass, romping in circles and tangling in Lucas’s legs.

  “Yes.” He took a breath and said, “And I thought it was a neighbor’s dog, and that Paul was bringing him over to show him to us. And it pissed me off.”

  Hah! He thought somebody else’s Ridgeback puppy was being flaunted in his face! I grinned mischievously at him. Patrick began to leave his upset behind, replaced by a growing delight . . .