Worth Fighting For: Love, Loss, and Moving Forward

by Lisa Niemi Swayze; Lisa Niemi

  It became clear that the treatments out there for pancreatic cancer were just not good enough to stop the disease. We had to get into a study, a clinical trial wherein new treatments are administered and documented. We had to think outside the box. Be daring. That pointed us in the direction of Stanford, which had a new drug in its second phase of study (good), an angiogenesis drug that was the new thing (also good). They also had the new technology of cyberknife, an incredible new robotic machine that delivered radiation therapy with amazing, unheard-of accuracy. (Who knew?) Maybe Patrick could combine the new chemotherapy drug with the cyberknife zapping the spot in his liver?

  —

  THREE DAYS later, we were excited to be at Stanford Cancer Center in Palo Alto, California, meeting Dr. Koong, director of the cyberknife program, and Dr. George Fisher, director of clinical trials at the cancer center. Although Albert Koong was very helpful, it was established very early on that Patrick was not a candidate for cyberknife therapy. His disease had spread; it would be a pointless exercise to chase spots and lesions. Radiation therapy was valuable only if it had a chance of arresting the disease, which this would not. As far as the clinical trial was concerned, Dr. Fisher actually steered us toward programs nearer to home, mentioning that he felt Patrick could get as good treatment from doctors there as he could from him.

  “What? But we want to go here!” I wanted to whine.

  Our hopes were being dashed. We were so excited about what they had to offer, and here we were being told that they had nothing for us. I stifled all the little cries and protests that were circling my brain and focused on scribbling all the information we were given on my big, yellow legal pad. Dr. Fisher, like the others, recommended that Patrick not waste time. That he think about what he wanted to do with the time he might, or might not, have remaining. And then he got up to take a call and left the room . . .

  I looked over at Patrick, who was getting visibly upset. Controlling his emotions, he forced an ironic grin, “Wow! All I feel now is doom and gloom. That I’m dead.”

  Dr. Koong looked at him, friendly, unruffled, “Dr. Fisher is very, very good. Trust me. He’s just being . . . I don’t know if this is the word . . . but modest.”

  Does that mean he can help Patrick and that we should not give up on getting treatment here? Or . . .

  Dr. Fisher came back into the room. And even though we were both fighting back a spiral into depression, we didn’t want to waste our time. We thought of every possible question we wanted answered before we left. The piece de résistance was, “You have to qualify for the PTK study,” Dr. Fisher informed us, “One of the requirements is that your bilirubin level be 1.3 or below. Unfortunately, your labs show it at 6.7. So, that right there disqualifies you.”

  —

  HIS BILIRUBIN was still high? After Dr. Lo successfully put in the stent, this count came down dramatically within twenty-four hours and then appeared to bounce back up again with the next set of labs. Back in LA, I asked, “Could the labs be wrong? This doesn’t make sense!” No, the labs could not be wrong, I was told. The only other explanation was that the stent had already clogged again.

  On top of that, Patrick was rapidly heading toward needing stronger pain medication. His indigestion was intense, and he refrained from eating, saying he felt like his stomach was full.

  And as if things weren’t crazy enough . . . we were supposed to fly to Germany the following week for a televised awards show. It wasn’t exactly a time we wanted to be traveling internationally.

  —

  SINCE WE had received Patrick’s diagnosis, I felt as if I had been plunged into a nightmare that I couldn’t wake up from. But also, there was a strange thing that started to happen to me after we got past those first few days in the hospital. I felt a new kind of energy, like I was being infused with a kind of rush of grief-stricken adrenaline. Maybe it’s the same, albeit a much smaller version, as what people must feel when they go into battle. And certainly in our own way, that’s what Patrick and I were doing—going to war. I could feel this grief stripping me down to my bare self . . .

  Nothing like tragedy to peel away the layers that we impose on ourselves. Like articles of clothing. “Oh! This one is about pleasing other people” and “Oh! This one is about getting acknowledgment” (an undergarment to the previous layer . . . ) and “Yes . . . this one is about holding resentments & blame” and “This one is about my ‘idea’ of what I think I should do . . .” “Who I should be?” “This is about my fear.” “This is about my hope.” And the fact of the matter is . . . What I want has nothing to with any of the above. What I want exists on its own without all those connections—to me, or anything else. My true heart’s desire (if I could call it that) is more like a river, and I can either express it, or not.

  It couldn’t care less what my little mind thinks about it. I can either turn away from it, or go for the ride.

  February 1, 2008

  I can live out here, on my own, without all the comforts of “who I am,” “what I do,” and “what I feel.” I loved Patrick. And that dwells in another world, all its own. I can live out here . . . I can live out here, with him.

  I also felt the physical evidence of this adrenaline when I worked out in our dance studio. I felt stronger than I had in a long time. As if I were eighteen, my leg whooshed up with effortless intention. Magic. I sat down to play piano, and I was faster and more adept than ever . . . I had this feeling as if I could leap over buildings in a single bound simply . . . because I could. I felt an incredible ability to overcome. That, or crash and burn big-time! For real, I had an incredible obstacle ahead of me. Both Patrick and I did . . . it was, how do we find a way to make him live? Yeah, just a little thing. And it was like my body was powering up for this, streamlining for the task ahead and leaving unnecessary encumbrances behind.

  My true heart’s desire . . .

  Maybe it was the terrible grief I was already feeling that was pumping new energy through my veins, or maybe it was really that this grief was pulling off the layers of clothing to reveal the “authentic” me under the cloak of all the things, all the personalities I’ve tried so hard to be.

  One thing for sure. I didn’t need to be bothered with any of that stuff now. I was traveling light.

  —

  THIS TRIP to Germany had been in the works for a few months now. Patrick was being presented the Goldene Kamera’s Award for International Star. It was a prestigious award, and beyond that, it would help the movie and the people who were involved in the movie that Patrick had just shot in Austria, called Jump. We were booked and set to go. If he backed out now, it would send up a big red flag. We worried about keeping his health problem secret. Although Patrick had times of extreme discomfort, other times he was able to function extremely well. He’d always had a high pain threshold and was tough when it came to handling discomfort. We decided to go, and turn around and come right back the next day to continue pursuing his treatment. But first . . . we needed to address his clogged drain.

  “Go to Stanford and have them look,” Maria encouraged. “We need to get the bilirubin down.” We still hadn’t given up on Patrick’s qualifying for the Stanford study. As was pointed out to us, Stanford was like a well-oiled piece of machinery where all departments worked in close union with each other. We wanted Stanford to be our home. Also, surprisingly and wonderfully, they had no problem accommodating Patrick on Saturday, thus giving him more time to recoup before jumping on an international flight to Germany the following Monday.

  We flew up to Stanford, and on that Saturday, Dr. Jacques Van Dam put a scope down into Patrick’s stomach. And found it full of food. Patrick was right about feeling full. Jacques cleaned it out as best he could and recommended Patrick stay overnight, and they would try again in the morning.

  Early the next morning, nurses woke us to take Patrick’s blood. A short while later, Van Dam and Dr. Fisher came into the room. We were tense about the upcoming procedure. Nothing seemed to go
according to plan, and we kept getting surprised by further complications. And now both doctors were back in the room.

  But Dr. Van Dam smiled, “Go home.”

  We were confused.

  Dr. Fisher elaborated, “Dr. Van Dam ran the labs on your blood this morning. Your bilirubin level is down to 1.6.”

  We were elated! It was the first time in two weeks that I’d seen Patrick really smile like his old self! Up to that point, I was complaining about how many times people had to take Patrick’s blood for labs. Every time we turned around . . . and we had just gotten new blood work done on Friday. And now I saw why they did it, why everyone wanted their own labs. I would never complain again! The stent was working after all. We could only guess that it must have unclogged itself all on its own. It was a mysterious thing, but we were going to take it.

  As soon as we got home to LA that evening, I went to the pharmacy to fill a prescription for Patrick. Patrick and I had been on the phone discussing the upcoming Germany trip with Dr. Fisher—the pros and cons, and what could happen. To make sure we were covered on the trip, I made a list of things to bring for Patrick to eat, and Dr. Fisher prescribed a heavier pain medication that Patrick would take if it came to that. It would be morphine.

  I walked into my local Rite-Aid with the slip. The lady behind the counter at the pharmacy took a look and shook her head, “I can’t fill this. It needs to be on a secure form. It’s a narcotic.”

  I was there to get a job done. Get the medication. I asked her, “What do we have to do to fill it? We’re going out of the country tomorrow.” And I found out that I couldn’t have the doctor call her, he couldn’t fax it . . . I had to present the secure prescription form in person. I was beside myself, and running out of options.

  “Unless . . .” the lady offered helpfully, “Unless it’s a terminal situation. We make exceptions in cases of those patients who are terminally ill.”

  I stopped . . .

  I didn’t want to say it, hadn’t wanted to say it . . . Then I had to, to this unfamiliar lady . . .

  “Yes, he’s terminal. He has pancreatic cancer.” As soon as I said it, hot, unwilling tears sprung into my eyes. I tried to quickly wipe them away, adding as brightly as I could, “But you know, we try not to think that way, you know. We like to think that there’s hope and we’re going to beat this thing. And . . .”

  “I understand,” she nodded kindly, and whisked the slip away.

  While I waited, I cruised the aisles of Rite-Aid and choked back the sobs that wanted to gush out of my throat. I hadn’t expected this to happen. I had been so good about keeping it together, keeping positive. A grief so deep it was unbearable threatened to overtake me. In a Rite-Aid, next to the Dr. Scholl’s section. I managed to keep it together until they called my name over the loudspeaker, and I collected the morphine and left.

  I wish I could get away

  Is there a place where I can get away from myself?

  Somewhere where they don’t even know my name.

  February 2008

  “They’re just going to have to understand. We can’t discuss it now, but when they know later on what was happening, they will more than understand.” I was canceling the Germany trip with our publicist, Annett Wolf. In the end, we decided that it was just too much. What a relief. Now we could take the next days to concentrate on getting treatment started for Patrick. But things were not going to be easy . . .

  After the great news at Stanford over the weekend, we were crushed to find that new labs showed that his bilirubin level had risen again, knocking him out of the Stanford program once again. I know it was tough on Patrick to Ping-Pong around like this. I could not accept that this could be so. And if it was so, what are we, what is someone going to do about it? I wished it, prayed it, to force it to turn around so he could get the treatment and the chance we all wanted for him. I felt like the little train that could “will” this into being, “I think I can, I think I can, I think I can . . .”

  Again, it was that rush of grief-stricken adrenaline. This heightened awareness that was so focused on him. And it kept me going. Kept me positive in the face of adversity. Whatever this inner strength and clarity was—I embraced it. And I knew I could keep it up for as long as it took.

  The clock was ticking, and we needed to start treatment, even if it wasn’t his first choice of therapy. Even so, I knew that the fight wasn’t over yet. Somehow, some way, this was going to be positive. It was going to be positive until . . . it wasn’t going to be positive. And we weren’t going to go there yet.

  We finally conceded. We needed to move to our Plan B. And we showed up at Dr. David Hoffman’s at Tower Oncology in Beverly Hills to start Patrick’s first chemo treatment. We showed up with smiles, nervous anticipation, and . . . positive energy.

  “Please do one more set of labs before you start,” I asked. “Just to make sure.” Patrick had just had labs done the day before. But I, we, needed that one last time before we forever sealed off the possibility of his getting into the Stanford clinical trial.

  “Of course,” Dr. Hoffman said, “We would do that anyway.” He was great.

  We waited, talked, and held each other’s hand, building our courage for the treatment that he would begin in just minutes.

  Dr. Hoffman came back into the room. And he grinned.

  “No treatment today. We ran the labs,” and then he added the magic words, “Your bilirubin is 1.3.”

  1.3! 1.3! That’s the number that qualifies for the Stanford trial!

  We bid adieu with warm, happy handshakes and went home to collect our flight bag and head to the airport to fire up our airplane and go to Stanford. On the way, I called the lab where we had gotten all the high bilirubin results. It wasn’t hard to figure out at that point that it was the only place that ever showed high counts. Those mistakes came very close to having harsh consequences for Patrick—he almost had surgery, and he nearly had to forgo his first choice of treatment against this deadly cancer. “Just to let you know, your lab work was wrong. You may want to check it,” I told them. There was disbelief on the other end of the line. “I’m just letting you know . . .” I said. And I’m sure they did check what the problem was, and did correct it, but they never even offered an apology. No “I’m sorry.”

  It was late in the day, and the treatment center at Stanford was empty except for a grinning Dr. Fisher and the nurses who would be administering treatment. It was a sweet victory. We were full of joy, and for that day, we felt like we had been granted . . . hope. It was an exciting day. A very, very exciting day.

  In the cockpit of our King Air 200. (Photo by Lisa Dickey)

  Chapter 4

  UNCHARTED

  TERRITORY

  IT WAS EXACTLY two weeks after Patrick had been discharged from Cedars-Sinai that he sat on the bed in the treatment room at Stanford Cancer Center, ready to receive his first chemotherapy. Patrick’s brother, Donny, came with us for moral support, and we were all chatty and happy, with Patrick’s feet propped up comfortably on the bed while Donny and I squeezed in chairs nearby, trying to stay out of the way. The nurses took blood for new labs, thank you . . . while we were introduced and interviewed by the doctors and the RN running the program. In this flurry of activity and conversation, Patrick was hooked up to a small plastic bag that hung next to him on a metal tree. When there was a small break in the conversation, I asked nurse Kathy, with casual curiosity, what was now flowing into the veins in his arm.

  She looked a little surprised, “Oh. That’s the Gemzar.”

  “Already?”

  Donny and I looked at each other with amazement, then started talking over each other, exclaiming, “No kidding!” “That’s the Gemzar?” “He’s been getting chemotherapy for ten minutes now and we didn’t even know it?” “Who’d have believed it?!” Somehow this notion just thrilled us. We had always thought of chemotherapy as having such sinister connotations, like it’s the big, bad boogeyman. Here Patrick was receiving it, an
d the event was so benign we didn’t even notice!

  Patrick smiled at our pleasure. But later he told me, “I definitely knew when the chemotherapy started. Not that it . . . felt really bad, but . . .” and then he found the right words, “I knew that there was some really weird, heavy duty stuff going into my veins.”

  But of course, he was way too cool to comment on it. So he smiled and kept talking with everyone like nothing was happening. Nothing at all.

  Every moment I got, I visualized that this drug going into his veins was made of light and good. That it would pour into his body like a brilliant knight and vanquish this enemy. Patrick’s getting chemotherapy was not an awful or scary thing. It was cause for celebration.

  His medication, or protocol as they called it, would be the study drug PTK, also called Vatalanib, which was easily taken in pill form twice a day, coupled with Gemcitabine, or Gemzar for short. This would be given intravenously once a week for three weeks, with one week off. If all went well, meaning if the treatment showed that it was effective and he was not getting worse, he would start the whole cycle all over again.

  —

  THERE’S A reason why people fight so hard to get better, to cure illnesses. Why doctors keep researching, developing new treatments. And there is a reason why there are all these experimental studies concerning a disease that, in this stage, proves fatal—because at some point someone will get better. That day will come. Why shouldn’t Patrick be the first one? We knew it was a long shot. But any victory against this disease would be a victory. Even if it just meant he’d have more time.