Curse of the Afflicted

by David Chill

  "How will this affect the quality of my life?"

  "Hmmm. Interesting question. The first few infusions shouldn't be impactful. But it's cumulative. The more chemo you do, the harder it gets on the body. But we also give you Decadron at the same time. It's a steroid. It'll help keep some of the nastier side effects at bay when the chemo's being administered. In fact, it actually gives you a bit of a lift. It's when you stop taking Decadron that you crash two days later, and fatigue sets in."

  "Okay. Is it important to start chemo right away?" I asked.

  "There's no reason to wait," he responded, hastening to add, "but if you feel the need, you should explore options."

  I took a deep breath. "I'm not an expert here," I said, my mind thinking back to my session with Dr. Heck. "But shouldn't we get a second opinion? No disrespect. I just want to make sure this is the best thing for me."

  "Ned," Leslie said. "Don't you think we should trust our doctor?"

  "No, no, he's right," Dr. Ashland said. "If you like, I can give you a few names of lung cancer specialists. One is local. Or I can call a few myself, I know a number of them around the country. Whatever you like. It's your decision. You have to be comfortable with it."

  For a brief moment, I felt reassured. Not about the disease but about the control. That the doctor was willing to cede authority here felt important to me. I needed to be the one in charge, even though my level of knowledge was extraordinarily pedestrian. I just had to get smart in a hurry.

  "I'd like to speak with someone," I said, "but you can call a colleague as well. Can't have too many opinions, right?"

  Dr. Ashland frowned and didn't say anything for a minute. "I suppose. Bear in mind, different doctors have different ways of doing things. There is no one right answer here. But go ahead and get another opinion or two. What I would like to do is schedule you in next week to start treatment. Monday's already booked solid, but I can squeeze you in on Tuesday. We can always change the schedule. What we shouldn't do is wait too long. Your tumor measured six centimeters. And as I told you last week, lung cancer moves fast. There are a number of options. The only option we should avoid is waiting. Time is not your friend."

  I shuddered at his last sentence but kept an outwardly calm demeanor. As we prepared to leave, the doctor's assistant gave us the name of a lung cancer specialist in Beverly Hills and offered to set up an appointment. We waited at her desk as she made the phone call, spoke for a minute and then looked up.

  "Dr. Knott has an opening this afternoon. Can you make that?"

  "Of course."

  She spoke for another minute on the phone, hung up, and wrote out an appointment card with the address and a two o'clock arrival time listed. She also handed us a disk and a stapled report.

  "You'll need to give this to Dr. Knott. So he can review your scans."

  I thanked her and we departed. After leaving Dr. Ashland, I sent a text to Eli with a number of pertinent questions, and he got back to me an hour later. Yes, Dr. Knott was a legitimate oncologist, no, he had not been sued for malpractice. He also graduated from Harvard Medical School and was considered one of the leading lung cancer experts on the West Coast. Eli hoped my concerns were assuaged. I did not provide him with an answer.

  We arrived at my next doctor's plush Beverly Hills office, which was located just a few blocks from Rodeo Drive, and the decor was quite fitting for an elite physician. Marble floors, a glass-and-slate coffee table, and real artwork hanging in the reception area. Not surprisingly, it was over forty-five minutes before we were invited into an exam room, where we waited another fifteen before the door swung open and Dr. Jacob Knott strode in.

  He was a big man, barrel-chested, and had a white beard that was neatly trimmed. He looked as if he were in his late sixties. The doctor nodded at me and then let his eyes wander over Leslie for a moment longer than was acceptable. He picked up the disk, and without a word, slipped it into his computer and began to jones the mouse, shimmying it back and forth. He brought up body images of a figure lying prostrate, the initial screen shots resembling a highly detailed chalk outline. The doctor clicked through a variety of images until he settled on one and stopped.

  "Here we go," he said. "This is the one."

  "What do you see?" I asked.

  "The nodule in your left lung. There's also activity in the pleural area," he said and kept clicking. "And the kidney. Yes. And the liver."

  "What are my options?"

  He said nothing, lifting up the radiology report with both hands. He flipped quickly through the pages, speed reading them, as if picking off the necessary data and ignoring the noise in between.

  "Unfortunately, chemo is what we're looking at right now," he finally declared. "There are some clinical trials, but without an identifiable mutation, I don't hold out much hope. At this point, chemo is your best option. And it's not a bad option, mind you. It's just more of a shotgun blast than a targeted approach."

  I swallowed. "I thought that chemo was the last option."

  "No, not necessarily. We just need to find a treatment that works for you. If it's successful, we put you onto chemo maintenance."

  I frowned. "What's involved here?"

  "You start with a regular chemo regimen for five or six cycles. Usually a triplet, three types of chemo at once. I'm sure Gus took you through that. The first few cycles are normally pretty easy. By the fifth or sixth, your tolerance will wane. But if the tumors shrink, we reduce the chemo levels to something manageable. Then, once a month, you come in for an infusion. It's called maintenance."

  "How long does that go on for?"

  Dr. Knott looked back down at the papers. "For as long as it works. When it stops, we put you on something else. And I have a couple of patients who have been on chemo maintenance for five years."

  "Oh?" I said, my spirits piqued momentarily.

  "Look, the goal here is to keep you around long enough for the next clinical trial. For medicine to come up with something better. There's a lot in the pipeline. We're making progress."

  "All right. So, what do you recommend? Dr. Ashland said something about a drug called Alimta."

  Dr. Knott continued to comb through the report. "Here it is. No, no, I don't think Alimta will work on you. Your T.S. levels are too high."

  I frowned again. "What does that mean?"

  "T.S. is an enzyme. If the levels are too high, it can interfere with the medicine and inhibit it from working to attack the cancer cells. The Alimta might not work. I would recommend Taxol, not Alimta. They're both chemotherapies."

  "What's the difference between the two?"

  "Alimta was developed specifically for lung cancer, it's more easily tolerated. Taxol is more of an all-purpose chemo, it's used to treat many different types of cancers. But it has harsher side effects."

  "And harsher means ... ?"

  "Neuropathy, hair loss, nausea. We know more about what to expect from Taxol."

  "That doesn't sound good. What is neuropathy?"

  "Pain in the extremities. Fingers, toes. Sharp pain, increased sensitivity, sometimes numbness."

  "Does that mean Taxol is more effective?" I asked somewhat cautiously.

  Dr. Knott thought for a moment. "Not necessarily. And it depends on the patient. Different patients have different reactions. Alimta can be a blessing or something entirely different. And my theory on T.S. levels is based on only a few cases. It's something I read about in a medical journal this year. It's not something that's been clinically proven, but, well, it hasn't been disproven either. I'm just basing this on my experience. Thirty-five years of treating lung cancer patients. It's a hunch, but my hunches are normally borne out."

  Leslie spoke. "If we go onto one chemo and it doesn't work, can we switch to the other?"

  "Yes, you can always go on to something else. We do whatever we can to find a treatment that's effective."

  I rolled this around in my mind. "I wonder why Dr. Ashland didn't mention this about Alimta."

&
nbsp; Dr. Knott shrugged. "I know Gus. He's a good man, a good doctor. His judgment is not wrong. We can't be fully sure. This is why you get second opinions. Not everyone has perfect knowledge."

  It was the last line that stayed with me through the remainder of the day. No one, not even the best doctors, could be certain what was optimal for a patient. They looked at the lab results and made their best guesses. Two bright people, looking at the same data through the same prism, and yet they arrive at different conclusions. And when two doctors recommend two different treatments, it is up to the patient to sort it out. I thought back to my session with Dr. Heck. You need to own your cancer. The statement didn't make much sense at the time. Now it did. Two doctors offering two different recommendations. I had to make the decision on treatment. Or did I?

  I thought back to something. Maybe I learned about it in a philosophy class at Berkeley. Maybe I read it in a fortune cookie. But the wisdom stayed with me. There is an old proverb that says when torn between two choices, pick the third. I didn't have a third choice. But I did have a third doctor.

  Chapter 24

  I had initially suggested to Eli that we meet at a coffee house on Saturday morning, but when he learned Angelina would be pitching in the playoffs, my friend the doctor insisted we go watch the game together. We found an isolated spot in the bleachers, close enough to see and be seen, but not so close as to have our conversation overheard. I carried two cups of black coffee from Peet's, but Eli declined his. He had already had his one cup of the day. Too much caffeine made him jittery; I got jittery from not having enough.

  "Some guidance would be greatly appreciated," I began, but waited until Eli motioned for me to continue. "It's about the decision on treatment."

  "Let me guess," he smiled. "Gus and Jacob have differing views."

  "Um, yes. Does this happen often with your posse?"

  "All the time," he said, shaking his head. "Ask ten doctors a medical question and you'll get ten different protocols. It's an occupational hazard with us. We wrestle with these decisions all the time. Honestly, medicine is as much an art as a science."

  My view of things was confirmed, but my qualms remained. The discrepancy in opinion was not unique, but it was still a problem. There was no doubt that the doctors Gus Ashland and Jacob Knott were brilliant and knowledgeable. But there was also no question that when it came down to recommending the best treatment, one of them was going to be wrong. I didn't know which one, and neither would Eli. But a decision needed to be made.

  "All right," I sighed. "There are two ways for me to go on chemo. Dr. Ashland recommended Alimta. It's specifically for lung cancer and it's easier to tolerate. Dr. Knott has a theory that Alimta wouldn't work on me because of something called high T.S. levels. He recommends Taxol. Harsher, more side effects. No guarantee either will work, no guarantee they won't. What do you think?"

  Eli looked out at the softball diamond for a long moment and processed this. "I'm not an oncologist, so it's difficult for me to weigh in. Professionally speaking."

  "But you're my close friend. Believe me, I'm not suing anyone if they're wrong."

  "I know, I know," he waved. "I want you to have the right treatment. Just like the others. I can call another lung cancer specialist. He's not local, otherwise I'd have you see him, too."

  "Is he far away?"

  "Nevada. He moved his practice a couple of years ago."

  "Nevada?" I blinked. "As in Las Vegas? The gambling Mecca of the world?"

  "Um, yes. He told me he left L.A. because of taxes. And Vegas has a lot of smokers. Sometimes you go where the market is. But, well, he has a math mind. He likes blackjack."

  "Wonderful," I said and looked over at the softball diamond. Angelina had taken the mound and was warming up. The first batter for the Viewpoint School stepped to the plate, swung at Angelina's first pitch and hit a weak grounder to first base for an easy out. The crowd applauded lightly. A couple of dads sitting up in the top row waved at me and signaled for me to come join them. I waved back and turned again to Eli.

  "I suppose it couldn't hurt to get a third opinion," I said, and then I began channeling Dr. Heck. You need to have an approach. "But I sense I'm going to be the one to decide this in the end. It's my body, it's my cancer. I think I'm going to have to own this. And if I'm in the game, I should be the one dealing the cards."

  Eli turned and stared at me. "Is this the new Ned? You're the guy who only has questions. This is a bit of a transformation."

  "Dr. Heck helped. Thanks for the referral, he's good. One session and he's got me thinking in a new way."

  Eli chuckled. "That wasn't quite what I had in mind. I was thinking you needed an outlet, a safe place where you could let your emotions loose. They're bottled up inside you. I can practically see it on your face. So can Leslie."

  "And you think they're still bottled up?"

  "Sure. Let me ask you something. Have you actually let yourself go yet? Emotionally?"

  I shook my head. I had not. I was not able to. Not at this point. There were decisions to be made, plans to map out, paths to explore. Couple all that with being tangentially involved in a capital crime, running a business, and suddenly having a high profile role in the media world, and there were just too many elements coming at me. Letting myself go was not on the table yet.

  "I don't have time to cry."

  "Okay, understood, but recognize you'll need some outlet for your emotions, otherwise they will eat you up from the inside."

  "Duly noted," I said dryly.

  "All right. Let's get back to your treatment options. You do own the cancer. What are your feelings toward the two treatments?"

  "I keep thinking there's got to be another way."

  Eli shrugged. "There are other types of chemo that can be explored. But Alimta is supposed to be the best choice for lung cancer. I'll call my pal in Nevada and ask about Jacob's theory on high T.S. levels. I'm sorry they didn't identify a genetic mutation. That might have made it easier to decide."

  "Dr. Ashland says he's trying to explore more options there. More tests. Possible clinical trials. But, yeah. That was a blow."

  "And you want to be the decider here," Eli chuckled. "That's not such a bad thing. You're smart, you're analytical. And if two very good doctors have two different recommendations, your selecting one of those is hardly the worst idea."

  "That's what I'm thinking," I said.

  "So, Doctor Ned. What's your decision process going to be?"

  "My goal here is to live a normal life. For as long as I can live it. That means avoiding things that are disruptive. If I need to do something harsh and painful, well, sure, I'll do what I have to do to survive. But if I have a choice? Why wouldn't I take a chance on the treatment that offers the least amount of problems."

  "Even if might not work?"

  I took a breath. "No one knows for sure. Might is the key word. When you talk to your pal up in Sin City, could you please ask him about that? Dr. Knott might be right, he might be wrong. I'd like someone who knows about this to weigh in."

  "Okay."

  "Maybe have him give me some odds, too. The overs and unders and all that."

  Eli chuckled. "No need to get snippy about it. But I'll ask him what he thinks. How's everything with Leslie? How is she holding up?"

  I turned my palms up. "She's worried. Angelina, too."

  "Important to stick together through all this. Lots of stress. Hard as it is to believe, I've seen marriages crumble under this kind of weight. Everyone has so much on their minds, so many worries. It doesn't take much to set someone off. That's why I passed along Dr. Heck's name. Maybe Leslie should see him also."

  "I'll suggest that," I said absently, "but if I do, I'm going to duck. And then pin the blame on you."

  He smiled and we turned back to the diamond. The next batter had worked her way to a three-two count and fouled off three straight pitches before taking a big swing and a miss. Angelina gave a small fist pump of exhilaration before
quickly composing herself. The next batter popped out on the first pitch and the side was retired. The Brentwood parents gave a nice round of applause.

  "You've got a terrific kid there," Eli said.

  "Yes. Sometimes you get lucky."

  "It's not luck. You worked at it. Kids from good families don't always turn out so great. I just saw one who's dealing with a meth problem. Dad's a partner in an accounting firm, mom runs a tech company. Means nothing if they're not around for their kids."

  I doubt Eli knew what he was saying nor how I would interpret it. Means nothing if they're not around for their kids. I knew he didn't intend it that way, and I knew I shouldn't respond badly to it, but I did. That I might not be there for Angelina. I might be gone. Not of my own doing, but gone, regardless. There is a guilt that comes with a deadly diagnosis, that even if the malady is not your fault, you somehow absorb the blame. And just because a child is bright, it doesn't mean they're able to forgive and move on. I didn't want her to think of herself as the girl whose father died too soon. But I didn't get to tell Angelina what to think. She was old enough to decide for herself.

  Eli departed, telling me he needed to make rounds this morning at Saint John's. I debated about climbing up into the eagle's nest with the other dads, finally succumbing to the siren call. When someone has had a high public profile, everyone wants to talk to them. I had little interest in sharing, but with Angelina being a junior, I did have one more year with this crew. Maintaining good relations sometimes meant doing things you don't want to do. A metaphor for other things in life. I climbed to the top of the bleachers.

  "Hey, Baker," called one of the dads, a portly man with a shaved head that glistened even though there was no sun out today. "What's cooking?"

  I smiled graciously. "Looks like we're off to a good start."

  "Angelina's got her groove going," said Dan Collins, one of the head eagles. Dan was in charge of fundraising for the school, the annual giving campaign that supplemented the school's coffers on top of the already hefty tuition revenue. "I also see there's a reporter from the Times over there. I'm wondering if they're here covering her or you."