“And then when I saw you . . .” he started to smile, “I knew something might be up.”
“Well . . . come meet your new puppy!”
Patrick scooped him up in his pajamas that first day and held him in his arms like a big, relaxed baby. Kuma stuck out his tongue and gave Patrick a big wet kiss on his cheek. We named him Kuma, which means “Bear” in Japanese. And Kuma is a big boy, he’s the biggest Ridgeback we’ve ever seen, and also probably the most adorably loving.
It was a wonderful day, with many more after. And you know . . . between the paperwork, the special crate Kuma had to ship in, and transatlantic flight, I spent a good deal of money getting that pup here. But I knew Julie would find me a good one. And what the hell, it was just money. I would have spent any amount of money to make Patrick happy. Money mattered less and less to me. What am I going to do with it anyway? This life isn’t going to last forever.
This journey kept revealing lessons to me about life and living. I looked at the past and was amazed at how serious I had always been. Sincere and serious! I dubbed it—all those “wasted moments.” But it wasn’t that Patrick and I were wasting time. We were busy building a life, careers, and always improving our skills and ourselves. What it was that I was seeing when I looked back was missed opportunities. We were always working so hard that we rarely took time to take real pleasure in what we had. In my current situation, I lamented about that. More and more I was realizing that I wasn’t enjoying myself and what life brought me enough. Maybe it’s my Finnish reserve, the idea that I always have to be “better” or that it’s “impolite to reward yourself.” It’s certainly a dancer’s trait that Patrick and I shared—you never settle, you can always learn more, and you always strive to reach past your limits. But I’ve learned that’s not everything. Yes, strive, but if you can’t celebrate . . . you’re missing one of the best parts of life. And I had to marvel at what I did have. Such riches, such love, such an incredibly fascinating world around me! How foolish is it to have missed any part of it?
I found there were many moments I should have been celebrating and having the time of my life instead of holding myself together in some kind of responsible way. The thing that was so enlightening to me was that those opportunities for enjoyment, love, and life were always there. Waiting for me. I just had to choose them. So what if things fell apart for a while? I could always pull them back together later.
We have a friend, Sheree, who worked as an assistant for us for over ten years. Sheree is very English, a smart, type-A personality with a high work ethic. And her husband, Randy, had been my aerobatics instructor and was bright and funny and wonderful. And he died in a catastrophic plane crash. I was devastated and so were many other people. But for Sheree . . . he was the love of her life. Randy had a unique and irrepressible spirit, and was one of those people who managed to have fun, any and everywhere he went. I remember Sheree saying how hard he tried to lighten her up when he was alive, to make her laugh and enjoy life.
“He tried . . . he tried.” Sheree sighed ironically, and she acknowledged how she just didn’t get it, not until much later.
I knew what she was talking about now. The good thing was—I had the opportunity to learn that lesson now. Before I lost Patrick. Not after.
—
A COUPLE of months after we got our new puppy, we also bought a new car. I was due for one, since the one I had been driving for twenty years had started to have some problems and was becoming unreliable. We could have gone with a Prius or something similar since we’re environmentally conscious. But instead, we decided to go in a different direction. We got a high-performance car—the Nissan GTR. This thing is wicked fast. And we’d load the GTR to go to one of his chemo appointments . . . we’d pull on the freeway, put ZZ Top’s “Tush” up loud . . . and I’d put the pedal to the metal. This thing took off like a bat out of hell. It could pin you back in your seat! Your cheeks felt like they smushed back into your ears. I’d look over and beam at Patrick, and I’d see him looking ahead at the road—a big, shit-eating grin on his face. And he’d chuckle . . .
“Wow.”
—
I RARELY ever cried in front of Patrick. He caught me a couple times, though, once when I broke down in the shower, collapsing to the tiled floor for quite a long time while the water poured over me. A few days later when Patrick and I were alone together, he kinda looked off into the distance and mentioned, “I heard you crying in the shower the other night.” I nodded, I couldn’t say anything to him. What was I going to say? That my heart was breaking? I knew he knew why I was crying. I think he just needed to let me know that he knew.
It was a lot to handle . . . And then there were always the songs about love, about loss. And I had to note one night . . .
How Do I Live?
. . . without you . . . I’m listening to this song that gives me such heartache it’s unbelievable that I actually continue. But I do, ’cause . . . you know why? Because it’s like I’m someone outside myself, looking at me. I’m looking at me, and the pain I’m feeling . . . And I’m taking mental notes, like I’m observing some alien. “Look at what that woman’s feeling.” “Why does that woman crave that man’s touch so much?” “What is it with that woman? I don’t understand.” And I guess it’s the “I don’t understand” that gets me through the song. This feeling is so immense . . . it downgrades to an alien. And I can listen to a song such as this . . . and have a kind of marvel . . . at the pain it evokes from the woman I watch.
March 1, 2009
We find a way to get through. We find a way to deal.
—
THE GOOD news was that as soon as Patrick went on Abraxane, his blood work and scans showed immediate improvement. But he was still spending more time in bed feeling unwell. His abdominal discomfort had increased and was severe at times. He had frequent nausea and was still struggling with keeping weight on. Despite the definite improvement in his CA19-9 markers and CT scans, his condition was deteriorating. Something was not right about it. The Abraxane was working, but it wasn’t working.
We had gone to New Mexico between treatments, and what little time he was up, he moved very slowly and gingerly, as if each step he took was on tender feet. When it was time to go back to LA, we packed up and flew back as usual. And the next day . . . he was running a fever. I took him in to see Dr. Hoffman. He ran a CBC and discovered that Patrick had come down with an infection, a different one from pneumonia this time.
“It’s something that sounds like ‘Club Med,’” I told my sister-in-law, Maria, on the phone.
“Klebsiella?” she queried.
“Yeah, that’s it!” I confirmed. “I remember it by thinking ‘Club Med.’”
It was a bacterial infection, and he went on antibiotics. But the first antibiotic wasn’t enough, so he was put on another one, Rocephin, hold the Abraxane, please. Again, with infections, we couldn’t risk lowering his immune system below what it was.
So, I hooked up the Rocephin twice a day after and before his TPN and just waited patiently for the infection to pass. He was looking pretty poorly, but he had looked poorly before. As far as I was concerned, there was no reason to think that this wouldn’t turn around. We just had to be a little patient.
I say that like I’m so sure, like it’s no big deal. But after being with Patrick for almost thirty-four years, and being so incredibly close our whole relationship, I could be very empathetic with him. This was great because it made me a better nurse. But it also was another burden I had to bear up under. And it took its toll in wear and tear on my energy and my body. Particularly when he was feeling really punk . . .
When he’s feeling bad, I feel like I’m sick, too. And it’s almost unendurable. Beneath my day, the things I do, the smiles I put on my face, and the positive things I tell myself, I am beyond pain.
March 15, 2009
But also . . . because of this closeness, I knew that this infection was going to resolve. He was going to be all r
ight. Who knows, maybe I was getting “spoiled” by all the little miracles that kept coming and showering down on us. And maybe I could feel positive because I truly felt the support of all those people out there in the world sending their energy and love and prayers. Patrick looked terrible, but I could feel him . . . inside . . . and I felt strength.
But to the doctors, the situation could be dire. They warned us about something called “rolling infections,” where in Patrick’s compromised state, he could start to get one infection on top of another, and they would just keep rolling until his body couldn’t take it anymore. Uh-huh. That’s one to file in the memory banks. But to me, this was a small infection. We hadn’t even given the antibiotics enough of a chance to work yet.
Patrick’s weakness and poor health were concerning enough that Dr. Fisher visited us at Rancho Bizarro in LA. I thought it was just a “fun” visit since George was in town, a chance to connect and catch up. But there were other things he wanted to discuss.
Patrick was sitting in bed, propped up with pillows watching a little television when Dr. Fisher arrived. And Dr. Fisher did his usual check of all his vital statistics. We chatted, talked about the old, beat-up, taped-up cars we all had in the past, and Donny came in and sat down with us. And after the chitchat came to an idle, Dr. Fisher segued, introducing the concept of DNR, the abbreviation for the order “Do not resuscitate.”
“I’m bringing it up as something to think about,” he put out there in the air.
I was like, Why is he talking about that? Does he think we’re there? We’re not there yet, are we? But I paid close attention. Like I did with everything.
“Say you hiccup and your heart stops,” Dr. Fisher broached carefully, “Things like that can happen . . .”
I looked at Patrick, and he was listening to Dr. Fisher with calm attention.
“Attempts at resuscitation are not as clean and pretty as it is on TV,” Dr. Fisher warned gently, “it can be pretty tough stuff what they have to do to you. The lungs could also fail. And you might find yourself having to make a decision if you’re going to call 911 or not.”
You know, I could either listen, and absorb the information, or I could dissolve in tears. I chose the former and kept listening.
But this made me see how unprepared I was. I don’t know what to do. And it made me wonder even more—how do I survive? How do I not lose my mind?
“I’d just hate to see you,” Dr. Fisher nodded at Patrick, “or anyone else, go through that kind of treatment if it’s not going to do any long-term good.”
We were all nodding kind of slowly. It was quiet for a moment . . .
And then Patrick cocked his head to one side and looked at Dr. Fisher a little skeptically . . .
“Are you saying that this is going to kill me?” he queried.
I furrowed my brow and looked at Patrick, and then Dr. Fisher. But Donny, across the room, snorted back a laugh.
To Donny, this was another perfect “Patrick” moment. We’d been dealing with advanced metastatic pancreatic cancer for over a year now. And here Patrick was, sitting in bed saying, Is this going to kill me? Like it was a foreign concept that hadn’t occurred to him yet! And Dr. Fisher had to take a step back, regroup, and answer as best he could!
There was disbelief in Patrick’s voice, a calm “nobody has proven anything yet” tone. Donny heard it. And I did, too. Or maybe that’s what I heard because that’s what I truly believed. I mean, yes, we were talking DNR, and it was good information to have, and it was wonderful that Dr. Fisher was brave enough to introduce the concept . . . but I didn’t see us going there yet. Nobody was going anywhere right then. But okay, DNR, that’s good to remember.
A week after the DNR conversation—Patrick got better.
—
DURING HIS infection, his CA19-9 rose from around 2,000 to 4,000. But things were improving. He beat the infection and was on his way back. He also started to look good again and finally regain some of his strength. We were still going to have some more tap dancing to do before the end of the month, though.
In the meantime, enough of that damn Abraxane! It wasn’t working for him and was sending him downhill faster than anything. And another week later, we moved on to Tarceva and FOLFOX. FOLFOX is a combination of three different drugs, one of which is called 5-FU. Of course, we couldn’t help but have a bit of fun with the “F U” part. The Tarceva . . . well, the Tarceva had the unfortunate side effect of rashes, terrible acne-type rashes that could break out on your face. And this was particularly true when the drug was actually effective. With Patrick, this rash happened only on his head, and only after he stopped taking the drug. As is often the case, the chemo’s effects could be fairly long-lasting. With us, it sometimes lasted up to a month after being off of the drug. This was a gift when he continued to show improvement even when he wasn’t actually getting treatment, and a bummer when the side effects were stubborn about going away.
When talking about chemotherapy to treat pancreatic cancer, Patrick always liked to remind people that it was like treating cancer with caveman tools. And though I hated to agree with him about that, he was right. At this moment, everyone is fighting to find better ways of treating various cancers. We knew going into this that the options available for treating pancreatic cancer were extremely limited, and the survival statistics for this disease were bleak. It’s why we wanted to get into an experimental drug study program. Nothing out there was aggressive enough to treat this disease. We always had to be looking outside the box for ideas, because none existed within the regular protocols. But I disliked Patrick’s “caveman tools” statement, and politely pointed out that the PTK and Gemcitabine treatments were the reason he was alive ten months and counting after his diagnosis. Not only alive, but shooting a TV series, and now, fifteen months later, once more starting to thrive. For me, that was success. Every month, every day I had with him, I cherished as a victory, and I was ready to thank and defend anything that helped him do that. Chemo was helping him to be here. But no, chemotherapy wasn’t going to cure him. The best we were hoping for was that he’d live long enough for a newer, better treatment to come out. But as we moved further into the year 2009, we were not seeing one on the horizon.
—
THERE’S SUCH a burden of responsibility in knowing when to give medication, how much to give, when to hold back, and when to change it. Dr. Fisher joked that I’d probably gotten my full M.D. training by now. But like I said before, it was important that I was doing it. No one could watch out as closely as I did, and I was getting pretty savvy at troubleshooting complicated situations. But I had learned, and was still learning a lot.
Even now that Patrick had a pain pump to automatically administer his Dilaudid doses, we still had to watch for when he needed more or less on the dose, and do our best to interpret the situation on both a medical and a personal level. Donny and I were very grateful for this labor-saving device. And before we got this pump, Donny had a bit of a funny mishap. Now that Patrick was better, I took the opportunity to quickly update my flight training in Dallas. It was the first time I had been away from him in more than a year. But I had Donny, so I turned Patrick’s care over to him, including the individual Dilaudid doses that I was giving manually to Patrick. And when I got home, from Dallas, Donny looked worried and started to complain to me . . .
“I’d just given him a Dilaudid and five minutes later, he’d ask me for another one! So, ‘okay’ I think to myself . . . this must be what Lisa and he were doing, so I’d give him another Dilaudid.” He said, frustrated, “And then ten minutes later, he’s saying ‘Donny, do me another Dilaudid’!”
“Oh, wow,” I winced, “You should have called me.”
Patrick was totally stoned on the synthetic morphine. I felt sorry for Donny being put in that position, but I knew what Patrick did. He did it with me! He’d get an injection of Dilaudid in his port, then it worked so well that he’d forget he just had one and ask for another one! I eventual
ly ended up hiding the vials so he couldn’t give himself doses at will and possibly overdo it. This happened when I woke up one night in New Mexico and found him sleeping sitting straight up on the side of the bed with a bare syringe in his hand! And in some ways, maybe the Dilaudid worked too well. Maybe he finally got a little bit of the party he’d been hoping for, if you get my drift. But I was not about to deprive him of any kind of relief. That is . . . as long as it was safe.
So I told Donny, “Just say, ‘I just gave you one. Let’s wait ten minutes and if you want another, I’ll give it to you.’” Fair enough, huh? Usually Patrick would forget about it, and if he didn’t, he really needed it.
But when we finally got the pain pump put on, it was the first programming on it that dosed Patrick way too heavily. We had to pull it back and reprogram. But it freed up Donny’s and my time—before the pump, we barely had a moment to do anything else because of the labor-intensive endeavor of giving him a Dilaudid injection every thirty minutes. By the way . . . Patrick didn’t want the pump. He didn’t like the thought that he had to be attached to pain medication and look like a cancer victim. And I know there was the scary, troubling thought that couldn’t help but come up—Will I ever be able to live again without this pump? Or is this what it’s going to be from here on out? It was going further down the road of giving up his life to being sick. And there was the fear that it would be hard, if not impossible, to reverse it.
But something had to give. Though Patrick had mixed feelings about it, the pump was a great relief to Donny and me. And . . . I didn’t ask for much, and he knew it.
—
ONE MORE bump . . . In late April, Patrick’s WBC, his white blood cell count, went up, indicating another infection. So he continued more antibiotics and went on another antibiotic, flagyl po, to treat the other infections that can happen when you do antibiotics . . . Okay, that’s fine, as long as it works.
Worth Fighting For: Love, Loss, and Moving Forward Page 19