Worth Fighting For: Love, Loss, and Moving Forward

by Lisa Niemi Swayze; Lisa Niemi

  Patrick and I looked at each other. We were impressed that this seemed serious enough for the doctor to get Patrick in for a scan, even though it was after hours. At the same time, we weren’t going to get too worried about something that might be nothing. Like years ago, when Patrick had a couple of oval brown marks on the lower part of his leg. They looked like motorcycle burns, like what happens if you wear shorts and touch your calf to the hot cylinder and scorch the skin. But these oval marks didn’t go away after a while. Although Patrick isn’t a huge hypochondriac, he worried that this might be cancer. He worried and worried for three years. And I heard about it and heard about it. Finally, I begged him to go to the doctor and ask him what it was so I didn’t have hear him keep fretting about it. He went. It was nothing but an errant blemish.

  At Mark Taper Imaging a half hour later, we were whooshed through the lobby and into a back room before the few people still around recognized us. An hour later, Patrick had the CT scan, and we were back in the car on the way home. We called Dr. Davidson to see if he had gotten the results yet.

  He had.

  The scans showed a 5 by 4 centimeter mass on the head of Patrick’s pancreas. That’s approximately 2 by 1½ inches.

  And an alarm sounded inside our heads.

  What? What does this mean? Dr. Davidson was hesitant to guess until further investigation. But we pushed.

  “We-e-l-l-l, it could be cancer,” he said.

  “And . . . what else?” hoping there was more.

  “You could have acute pancreatitis. Which could be caused by heavy alcohol use,” he ventured.

  I didn’t like the tone of Dr. Davidson’s voice. He was usually very friendly and engaging, but from the time he got Patrick’s blood results back, he had been quite serious and professional. Though I did my best to ignore it, I heard in his voice that he was afraid, more than afraid that Patrick had cancer. I was hoping for the better scenario—that it was pancreatitis due to alcohol consumption. That gave me something to grab on to. Patrick had slowly started to drink again a little here and there, and who knows, who knows . . . maybe a lot more when I wasn’t around.

  In figuring out what this thing was, this mass, the next step was for Patrick to have an ERCP (endoscopic retrograde cholangiopancreatography), a procedure in which a scope is inserted down your throat, through your stomach, to reach your bile duct; there the doctor inserts a stent that will open up the bile duct, thus letting bile flow, relieving his jaundice and pale stool and bringing his bilirubin count down. Okay . . . Also while they are in there, they will take a look at the mass, aka “the tumor,” and they’ll get a biopsy. Great, great, then we’ll know! The only problem was that this wasn’t going to happen for another five days.

  “Five days?”

  We were not happy. We already knew that this might be cancer. Five days of not really knowing was . . . ridiculous! I knew that Patrick was upset and tense, although he didn’t say too much about it. I jumped on the Internet, trying my best to find evidence one way or the other (mostly looking for the noncancer alternatives), but the information was so broad at that point, I just gave up.

  We just kept the most positive outlook possible while we waited. Funny that you would hope that a diagnosis would involve alcohol abuse, that you would pray for it even . . . rather than have it be a diagnosis of cancer.

  The days went by and finally . . . it was early on a bright Saturday morning when we showed up at the gastroenterology department on the seventh floor at Cedars-Sinai Hospital. It was a busy day there because it just so happened that a big conference of GI doctors had assembled for that weekend. In order to get Patrick in for the ERCP as quickly as possible, we chose to go ahead and do it during the conference, otherwise it would have been another five days before he could get an appointment. We couldn’t bear waiting any longer. Basically, this conference consisted of a couple of days in which gastrointestinal doctors gathered from all over the country to perform, to watch the procedures, and to exchange information. Though we worried about there being so many people and the risk of Patrick’s privacy being compromised, we saw the situation as a big, big plus. Patrick was going to have some of the best doctors from all over the country looking at this. We felt lucky that we were going to have so many expert minds involved.

  The ERCP would involve three doctors in one room who would insert a scope down Patrick’s throat into his insides with a camera attached, and in the room next door, what the camera saw would be viewed by twenty or so doctors. There was great excitement and energy in the department, people hurrying around with cables strewn through the rooms hooking up to recorders and monitors. I thought it was kind of ironic, I mean, Patrick is used to being on camera, right? But this was like some crazy sitcom, “We’re shooting live! Get ready!” But there’s something so personal, so oddly intimate, in a different way, about having a group of people looking literally inside you. There’s no celebrity, no doubt about your humanity when you’re traveling down a person’s esophagus, down into the deep regions of his gut.

  Patrick and I laughed and chatted with the nurses as he was prepped for the procedure. I took a deep breath and held his hand throughout, and when it was time for him to be wheeled in, I kissed him lightly on the lips and smiled at him, just in case. “I love you,” I told him. Already getting woozy, he returned with a dopey smile, “I love you.”

  —

  THEY COULDN’T get the stent in.

  Dr. Lo and the other doctor who actually performed the procedure took me into a nearby private office afterward and explained that the area around his pancreas was so crowded and blocked that they couldn’t get through to insert their little piece of metal and open it up.

  And another thing . . .

  “He has pancreatic cancer.” They were solemn. “Everything we saw points to this. The blockage, the mass is consistent with . . .” I don’t know which one was saying this to me, or whether both said it together; it all ran together at that point. I just remember the information kind of freezing in my brain. I heard it, but I could feel it freezing . . . because it had no reality attached to it.

  “Are you sure? How can you be sure?” I had to ask.

  “We’re 98 percent certain,” they said with a look that indicated they were sorry to say it. They filled me in with some information about the disease, where it was placed with Patrick. Adenocarcinoma, the head of the pancreas . . . that it can be aggressive . . .

  “Maybe the biopsy can come back negative?” I hoped.

  One doctor took a breath, as if he was considering saying, “There’s always a chance.” But he thought better of it and let his breath go, “No. . . . It’s just going to confirm what we already saw.”

  “That’s right,” the other nodded.

  “We’re so sorry . . .”

  —

  I WAS feeling an odd rush of different thoughts: Oooh, I don’t want to cry, not now, not now. Should I cry? I don’t know what to do. Why do I feel nothing? Am I looking stupid? Am I hearing what they’re saying? I feel okay, but can I trust myself to really hear this information? I didn’t know how to feel what I was feeling. The word “cancer” brought instant terror, but terror that was uninformed and confusing, so much so that I couldn’t even identify it as terror at this point. I looked around as we talked . . . it was a normal day, like any other normal day. And yet, I had just been given this huge news . . .

  “Would you mind,” I blurted out, “Would you mind getting on the phone with my sister-in-law, Maria, in Houston and explaining this to her? She’s an oncologist there . . .” I didn’t trust myself to hear them properly.

  “Of course.”

  I found Maria’s number in my cell phone and dialed her, my fingers tingly and removed. My oldest brother, Ed, picked up. “Ed!” I tried to sound casual but to the point, “Is Maria there? I need to talk to her.” A doctor’s husband, he didn’t ask any questions, he just said, “Sure, I’ll get her.” And he handed the phone over.

  Maria�
��s voice was bright and buoyant, “Hello, Lisa!”

  I explained where I was, that Patrick had just had an ERCP, that they had just diagnosed him with pancreatic cancer and I needed to let the doctors explain to her what was going on because I didn’t trust myself to remember it all.

  Maria was suddenly quiet, “Okay, sure . . . put them on the phone.”

  I handed the phone over to Simon Lo. I felt that I was calm and in control, that I was handling this. Then why was my voice shaking? Why was it so cold in the room?

  —

  PATRICK WAS recovering slowly from the endoscopic procedure, and doing so poorly. Most people bounce right out, but not him. It’s possible that the amount of air they had to pump through him to attempt to get the stent in was now causing him pain. I joined him at his bedside as he started to come around, my hand resting lightly on his shoulder. He grimaced and then emitted a groan. He was still woozy and recovering from the anesthesia. I was recovering also, but not from the drugs. I was trying to get my footing, trying to figure out what the next step was. How do I tell him this news? How do you tell someone he’s been diagnosed with cancer?

  His abdominal pain from the procedure was so intense that the doctors had him stay overnight in the hospital, and we moved into a room. He was still dopey and now had new pain medication on top of that. I didn’t feel like I could tell him, not when he wasn’t fully conscious. How can he assimilate information like this when he was incredibly medicated and in pain? I decided to wait until morning. Yeah, that’s what I’ll do . . . I’ll wait . . .

  What a dreadful night. Living with this horrible knowledge all to myself was an incredibly awful thing. I felt as though I was the one who had crawled into a coffin and closed the lid. I could hear the nails being banged into the top. And it was very dark and lonely there. And as I lived with this knowledge, I didn’t feel too terrible about not telling him right away. I felt that it actually was a good thing that I hadn’t told him yet, and in a way, it became my gift to him. I knew how I felt having this new, terrible knowledge, and I couldn’t imagine how he’d feel once he knew, too. I mean, he was the one who had cancer. I counted . . . if I waited until morning, he’d have eight more hours of innocence. Eight hours was a lot of time. A lifetime, in this case. Also . . . I suppose I didn’t tell him because I didn’t want to go into that future just yet. I knew that, inexorably, on a dime, our lives had turned. And they’d never, ever, be the same from this day forth. Once he knew, there was no going back. We’d be on our way.

  —

  I WOKE up on the lumpy hospital cot the next morning, dressed in the same clothes I had been wearing since the previous morning, and brushed the hair out of my face with my hand. Dr. Nissen, a young surgeon we hadn’t met before, was sitting at the foot of Patrick’s bed talking to him. Patrick was alert and awake. I panicked that the doctor was going to say something and tried to straighten myself up and get my bearings as fast as I could. But I was too late. Patrick was looking confused. The doctor looked at me. I’m sure I looked scared.

  “He doesn’t know?” he was asking me.

  My stomach turned. I shook my head. “I didn’t tell him yet.”

  “During your ERCP they found you have pancreatic cancer,” he told Patrick. So much for picking the right time.

  Patrick looked quickly at me, alarm rising in his eyes. I just met his eyes as steadily and calmly as I could. Dr. Nissen continued explaining what he could provide as a surgeon, that surgery provided the best chance of survival, but they had to confirm that the cancer had not yet spread to other organs.

  We were nodding. I could see Patrick taking in this information evenly, and he definitely appeared attentive. But he was as stunned as I was. As he told me later, inside he was thinking . . .

  “I’m a dead man.”

  I think both of us had that kind of deer-in-the-headlights look the entire day. We kept calm and composed, as we had learned to do under pressure, as an overwhelming slew of doctors came in and out of the room, most of whom we had never seen before. For the next couple of days, doctors were assembled who could address any and every possible aspect of the disease, from surgery, to attempting another stent in the next week, to chemotherapy and treatment options, to setting up his PET scan for the following day. There were discussions about how to alleviate the intense discomfort he still had, about different hospitals that offered treatment, risks of infections, pain management . . . One thing that was hard to take was that no doctor sugarcoated the disease. Every single one of them told us there was no cure, and that we had some decisions to make quickly—sooner rather than later. Though it was hard to hear, I respected them for being so honest. I would rather hear the truth. I can do something with the truth. I can’t do anything with a lie, even if it is a little fib. Patrick felt the same. We held on to the hope that the disease had not spread and Patrick could go into surgery, a major, complicated surgery called a Whipple Procedure. They remove most of the pancreas and parts of other organs, thus increasing his chance of survival past two years by 35 percent. What was the life expectancy without the procedure?

  “How long have I got?” Patrick was brave enough to ask Dr. Hoffman, one of the doctors and an oncologist/cancer doctor who could provide treatment locally in LA.

  “It depends. Maybe a couple weeks, maybe a couple months,” replied Dr. Hoffman evenly. “I won’t kid you. This disease is extremely aggressive.”

  Later that first day, Patrick turned to me and sighed ruefully. I could tell there was emotion under the sigh, but he was without self-pity when he remarked, “You know . . . whenever I heard that someone had pancreatic cancer, my first reaction was, ‘Well, he’s outta here.’ ”

  I couldn’t reply, I could only listen.

  Patrick and I had been married for more than thirty-two years and had been through the worst and best life could bring us. But nothing could prepare us for this diagnosis. Nothing could prepare us for the hours of just doing our best to take in new information regarding further tests, possible procedures that could be done if the disease hadn’t spread, and the possible outcomes, of which there were pitifully few. Okay, to be straight, if his cancer had indeed spread, we were being told that there was only one real possible outcome, and it’s not the good one.

  It was a good twelve hours after Patrick first heard his diagnosis when all the doctors and nurses finally dwindled out of the room for the day. The staff shift changed, it quieted, and he and I were finally alone.

  After we revisited and recapped the day and all the information we had received, we fell silent. What could you say? I crawled into the bed with him and laid my head on his shoulder. And started to cry. And then, softly through my sobs, I begged him, “Please . . . I can’t do this. Please, don’t make me do this.” I had been through thirty-two years of ups and downs with him, been through a yearlong breakup, jumped out of airplanes, survived fame, failure, off-airport landings, a miscarriage, drunken arguments, rehab, horses, dogs, cats, laughter, shouts, and tearful embraces. And now I was begging him to not ask me to do this one last thing. As if he had a choice about changing his reality. It was a nonsensical request, and I knew it. But I so did not want it to be true. And at that moment, and after all we’d been through, I felt finally beaten. I wondered if I could ever get up again.

  But that was that day.

  Giving Patrick a hug that clearly says, “I’m not letting you go anywhere!”

  Chapter 3

  IT AIN’T OVER TILL

  IT’S OVER

  I WOKE UP THE next morning, and somehow, I had taken a look in my little storage room for any emergency reserve strength and found enough to get through the next twenty-four hours. We found that the disease had spread to his liver. This was not the news we wanted to hear. It meant no best-case scenario. It was worst-case scenario.

  But we don’t know everything yet. Don’t panic. Hold steady.

  We were not going to scare off that easily, we were still going to research for information
and answers . . .

  Patrick was hanging in there. He was steady, keeping a level head, but I knew he hoped as much as I did that we would find some answers. After another visit to the seventh floor, Dr. Lo successfully placed the stent that got Patrick’s bile duct open again, and we were checked out of the hospital to go back home. Patrick was tentative.

  “It’s like . . . going home is going to make it real.” He looked brave, but there was a hint of dread in his voice.

  Even home was different now. Not the same place at all. It had now been transformed into a command center, dedicated to finding the best possible course of action for Patrick. Notepads, Internet research, phone calls, strategic planning . . . From day one, we had begun a journey of education, planning, and stubborn optimism against the disease that would prove to be the fight of our lives.

  —

  OUR GUIDING light as we navigated through these tricky waters of doctors, hospitals, and treatments was my older brother Ed’s wife, sister-in-law and oncologist Dr. Maria Scouros. I had been on the phone with her every day since we got the diagnosis. How lucky was it that we had her? I can’t imagine what a disadvantage it puts other people at to not have someone like her to help. Her resources and the people she knew were phenomenal, and she was able to provide us with information about the most cutting-edge treatments and technology that was out there. She was an educated sounding board. And she didn’t scare off. She was aggressive, and positive! And she knew how fast this disease could spread.

  “Whatever you decide, you guys, I want you to be in treatment in the next two weeks,” she ordered. That meant we had to compile information quickly and start meeting doctors—now. “Okay. When you’re meeting doctors,” she continued, “if they say they want to make you comfortable, I want you to turn around and walk out the door. Because we’re not here to make you comfortable, we’re here to make you better!” She said it fiercely and I’ll never forget it, and nobody could be on board with that kind of attitude more than Patrick, who was born a warrior!