Curse of the Afflicted

by David Chill

  "Yes," I said, maybe a little too forcefully, but for a brief moment I felt the strength that comes with releasing a true emotion. "Something is wrong."

  "What is it, Daddy?"

  "Yes, Ned. What is it?"

  "Please sit down."

  The two of them looked at each other and slowly eased onto the couch. I sat across from them in a rocking chair, an antique bentwood rocker we had purchased at a garage sale, one that Leslie loved and I did not. It looked more comfortable than it was. But the rocking provided me with a modicum of comfort, a back and forth swing that felt more reassuring than sitting motionless on a static chair.

  "I need to tell you something."

  Leslie frowned. "Does this have something to do with the vice president?"

  "No," I said, my voice starting to crack. "It has to do with ... my visit to Eli. The chest x-ray. He saw something in it ... a small mass on my lung. He had me go in this morning and do scans. I also saw a respiratory specialist and they drained fluid from my lung. They believe it's ... cancer. Lung cancer."

  "Oh, God, Ned." Leslie gasped.

  "Daddy!" exclaimed Angelina. "How can that be? You're not a smoker!"

  "It's not a requirement sweetheart. And I don't really know how I got it."

  "Are you going to die?" she asked, the pool of tears forming in her blue eyes.

  "No," I said and tried to smile, although I sensed I was failing. "I'm planning to live for a long time. We'll figure out a plan. There are treatments. There are options."

  She attempted to process this. Leslie came across the room and kneeled down next to me, wrapping her arms around me in what might have started out as a hug, a comfort for me. But then she quickly buried her face into my chest and began to sob softly. I stroked her hair. Angelina moved to my other side and did the same thing. I opened my arms and drew them in, pulling them closer as they nestled their faces against me. I patted their shoulders and rubbed their arms.

  It is often the stricken who are burdened with the need to dispense bad news. In so doing, we need to provide solace to loved ones, reassure them, qualm their fears, soothe them and bring them to a place of normalcy. A place of hope. Logic dictates that we, the affected, should be the ones to receive comfort, but the reverse is frequently the case. I had been afforded a small amount of time to process the news, my loved ones had not. My family needed an explanation, and perhaps a way to be shielded from the devastation, a task that was suddenly thrust upon me. It was ironic that the person who is diagnosed with the disease does not get this from their physician. Doctors, often experienced but unskilled in the sensitive art of providing bad news, mollify it as best they can, then let the patients sort out their emotions themselves. The patients are forced to shoulder that unfortunate responsibility, the staggering weight that comes with trying to remain calm in the face of an impending and frightening storm.

  "What does Eli say?" Leslie sniffled.

  "He's setting me up with an oncologist. I'm seeing him tomorrow. Can you go with me?"

  "Of course."

  "Daddy?" asked Angelina.

  "Yes?"

  "How can you be so sure you're going to live a long time?"

  I looked at her and didn't have a pat answer. Children inevitably discover their parents are fallible, not omniscient, and for bright kids that moment comes early. Angelina learned this years ago, most likely when I tried to give her advice on boys that didn't pan out. And not because I was necessarily wrong, it's simply that boys behave differently now than when I was their age. But the recognition sunk in, the sense that her father could be wrong, not knowing all there was to know. She had yet to grasp that there were just too many issues in the world, her father could not know everything. At some point she would be sympathetic. But when that point arrived, I suddenly realized, I might not be there to share it with her. I might be gone.

  "The odds say that some patients will survive for a long period," I said, realizing my logic was not on firm ground, but also realizing I needed to say something. Anything. "There's no reason why I can't be one of those people."

  The answer may or may not have satisfied Angelina, but she did not pursue it further. We huddled tightly for a while, separating long enough to order in a pizza, and spent the evening looking over old photos together, a hodgepodge of albums I had assembled over the years. They celebrated our life as a family, shots of us having fun, being silly, mugging and pouting for the camera, framing the years. But they were largely photos of Angelina, marking her growth and changes, freezing time accurately, in the way only still photos can do. I noticed that my face wasn't in a lot of these shots, the obvious reason being I was the one holding the camera. We smiled at the memories, but the warm glow didn't last long. They were fleeting moments of joy, a glimpse back at the past, but quickly punctured for me when my dark thoughts reemerged, the nagging fear of what the future might have in store for me.

  I had not slept well the past few days, so Leslie gave me one of her sleeping pills, a drug called Dalmane. This was an old-school pharmaceutical that did a thorough job of knocking me out for eight hours, but it also left me groggy and in a daze when I awoke. A few cups of strong black coffee in the morning enabled me to slide back into the world. Together, we dropped Angelina off at school, her enclave in Brentwood, and headed off on our quest, to begin the next phase of our lives.

  Chapter 10

  The cancer business was booming. Dr. Gus Ashland had a thriving practice, with ten patients sitting nervously in the waiting room and another two dozen scattered about his clinic. Some sat in exam rooms, their doors only partially closed. Others reposed uneasily in thick chairs as they received chemotherapy infusions from tall, free-standing devices holding clear plastic drip bags. The machines would occasionally give off beeps, indicators that the process was working and the drugs were still seeping into veins.

  I filled out reams of insurance forms, some asking about my condition, others requesting my Social Security number and driver's license, a tact to provide the clinic recourse in case I failed to pay my bill. After a short wait, a nurse escorted us into a sterile exam room and we sat quietly for another twenty-five minutes. A curious white poster was tacked to the wall. The poster instructed physicians on patient interaction, directed them to show empathy, ask questions about the patient's comfort and acknowledge the patient as an individual. The poster included a list of recommended questions to ask. There was also a reminder at the bottom that physicians would be evaluated by patient satisfaction surveys, and their bonus would be partially dependent upon achieving outstanding scores. It struck me as the type of survey Blair and I had conducted for corporations evaluating their customer service reps.

  The door opened, and a serious-looking man entered, his salt and pepper beard making him look distinguished and important. He wore the physician's standard white lab coat, and carried both a folder and an iPad into the room. Placing them down on the counter, he opened the folder and scanned through a few documents, silently reading for a minute before looking up and introducing himself to us.

  "I'm Gus Ashland," he said, holding out a hand. "I understand you're friends with Elijah Sterling."

  "From college. Berkeley. Known him for over thirty years."

  "Eli's a good man," he said.

  I agreed and introduced Leslie. She shook his hand silently, her lips pressed tightly together. Leslie had hardly spoken this morning, unlike her in many ways, she was obviously still processing all of this. I sensed the shock of the diagnosis could be greater for her. In addition to feeling horribly for me, she no doubt felt badly for herself and Angelina, perhaps conjuring up a future far different from the one she had planned. I wanted to ask her about her feelings, but doing so might require me to share the depth of mine, something I was woefully unprepared to do.

  "I've looked through your scans," he said, picking up the iPad and tapping it a few times. "And also your charts. But first, tell me about the pain in your back. Scale of one to ten, one being hardl
y any and ten being excruciating. What would you rate it?"

  "Right now it's a zero," I said, moving into that comfort zone I had when dealing with data, a topic far easier than providing a qualitative assessment of my emotions. "Having the fluid drained from my lung worked for the back pain. Before that, I'd been taking Advil. About eight to ten tablets a day. Without it, I might have rated the pain a seven."

  "That's a lot of Advil," he cautioned. "And draining the fluid is only a temporary stop gap measure. The fluid will probably gather again. Was it a constant pain?"

  "Only when I breathed deeply."

  Dr. Ashland typed something into his iPad. "We'll need to do a permanent procedure to stop the fluid from building up in the lung. It will require a hospital stay for a few days. The procedure's called a pleurodesis, we use talcum powder. It seals the pleural area so the fluid won't have a place to gather."

  "Where will the fluid go then?"

  Dr. Ashland smiled and kept tapping into his iPad. "The fluid will just go back into your body the way it normally should. We also need to do a biopsy of the tumor in the lung; we can do that at the same time. Kill two birds with one stone."

  I choked in some air. "Poor choice of words," I managed.

  He stopped and looked up. "Sorry."

  "Can we figure out how Ned got this disease?" Leslie asked, her voice shaky.

  Dr. Ashland shrugged. "Probably not. It says here he's a non-smoker. And you haven't lived in an area with high radon levels. Or any exposure to asbestos. It's possible air pollution was a factor. It might be genetic, even though it says here your parents are in their eighties, and they never had cancer. Possibly a recessive gene. There are just some things we don't know. Oncology is better at assessing how to move forward than analyzing what went wrong in the past."

  "So just how do we move forward here?" I asked. "What are my options?"

  "There have been a lot of advances in lung cancer treatments in the past few years. I've helped enroll some stage four patients into clinical trials. I do have a few who've been living for three years on these new drugs. It's been amazing."

  Next to me I heard Leslie gasp. She beat me to the punch. Three years. For someone who had just turned fifty, whose parents and grandparents had all lived into their eighties, the mere possibility that my mortality could be short-circuited so fast and so abruptly was gut-wrenching. The doctor seemed to read this on my face.

  "Okay. I know you're probably worried. But once we do a biopsy, we can test the tumor for genetic mutations. There are some targeted drugs that have been approved, and some more are in the pipeline. We're seeing cancer treatments evolve. It's no longer just a terminal illness. Medicine is aiming to make lung cancer a chronic condition. There are a lot of people living a long time with cancer, far more than you might suspect. It's becoming something that can be managed."

  I tried to take this in. "What are genetic mutations?" I asked. I looked over at Leslie and was glad she was with me. Between the two of us, maybe we could piece all this together.

  "Well, to put it simply, those mutations are critical to understanding how to treat cancer these days. We can now identify many of the genetic mutations, and we have drugs that can treat certain types of tumors. We know if you have, say, the EGFR mutation, we can treat it with Tarceva. It's a pill you take twice a day."

  "And a mutation is ... ?"

  "Oh, I'm sorry," he said with a wave of the hand. "Genetic mutations are changes to your genes that can be linked to the type of cancer you have. These mutations are typically only found in cancer cells. If we can identify the mutation, we may have a drug that can inhibit the cancer from growing and spreading."

  "And if you can't identify this ... mutation?" Leslie managed.

  "We can treat it with chemotherapy, it can be very effective. It's an aggressive treatment, It does have side effects, but for some patients, it can add years to their lives."

  I shuddered at the burgeoning sense that this nightmare was starting to feel real. That this wasn't a dream someone would gently end by nudging me out of a slumber. I knew very little about cancer, except that chemotherapy was a veiled poison, a shotgun blast of toxin that was injected into your body, a rolling barrel of chemicals that killed whatever was in its path. My recollection was it did not differentiate between healthy cells and cancer cells.

  "Will any of this ... cure him?" asked Leslie.

  Dr. Ashland paused. I didn't like pauses. They were often made for dramatic purposes, a signal that something untenable was in the offing. As if the doctor was trying to search for the right words, but in reality, he was allowing the emptiness of silence to provide a smoke signal for his thoughts, the ones he knew we did not want to hear.

  "No," he finally said. "These drugs can control the cancer, reduce the size of the tumor, prevent it from spreading. It can put the brakes on the disease for a while. Sometimes for years. But the cancer cells are often able to adapt, they're difficult to eradicate completely. And like I said, there may be other options. If you can take a pill, that's better than taking chemo. And we're entering a new frontier in science, we're honestly not sure how long these pills will work on patients. Maybe a few months, maybe for many years. We don't know yet. But the pills have fewer side effects, and people can generally tolerate pills easier than chemo."

  "But they won't rid my body of the tumors?" I asked.

  He shook his head and began to frown. "Not necessarily. At least not permanently. We're making strides. But even these targeted treatments aren't guaranteed to last forever. At best they'll work for a few years. The trick is to keep you around for the next breakthrough drug to come along."

  The comment hung in the air. Keep you around. The harsh clarity of his words formed a dark cloud that elongated the moment, stretching the awkwardness. My mind started to wander and I vaguely considered if I should direct him back to the list of humanizing doctor questions that were tastelessly fastened to the wall.

  "You said something about three years," I said slowly, working to not stammer. "Is that typical?"

  "Look, with cancer, there is nothing typical. Everyone responds differently to these treatments."

  "I understand the five-year survival rate is low. Single digits."

  He shook his head, almost vehemently. "Those survival curves are always out of date. You're referring to the Kaplan-Meier curves. I admit, they may look grim to an untrained eye. But next time you look at one of those, you'll see the tail of the curve extend for many years. There are always patients who outlive expectations. I even know one who outlived his oncologist."

  I smiled, albeit very briefly, and asked the question that had been rolling around in my mind for the past day. "So you're saying there Is a chance, a possibility I might live into my eighties? I'm fifty now."

  Dr. Ashland wiped his face with a broad hand and thought hard for a long moment. "I have one patient that's been with me for twelve years. We just don't know why. Not yet."

  I sighed. The not knowing was the great difficulty, but also, at the same time, the greatest encouragement. It is the blind alley into which I was about to plunge, not aware of the direction in which I was going, only that it was better to be moving forward than remaining stationary. Because by doing something, anything, we can maintain a hope in the unseen, as fleeting and elusive as it might be.

  "I have some more questions," I said. "I hope that's all right."

  "Of course," he said. "In fact, Eli told me you ask questions for a living. Are you a journalist?"

  "Not exactly. Market research. I conduct surveys and focus groups. But yes, that's what I do. I ask people things."

  "All right. Go ahead."

  "What if I do nothing?" I started, asking my Hail Mary question, the type of query one hopes and prays will be answered with a rejoinder that is cloaked with possibilities. "Is there any chance this could just fix itself and go away?"

  "The ostrich strategy," he mused, as he began to swat this option down. "No, that's not a good plan
here. Some cancers grow over a period of years. Lung cancer grows over a period of months. Doing nothing will simply bring the end about quicker."

  I nodded cautiously and thought briefly about my client, the Garter Vitamin Company. "What about supplements? Do herbal or homeopathic cures work?"

  Dr. Ashland smiled patiently. "You've been on the internet, I see. Not a great idea. Lots of scams, and lots of information that's outdated. There might be that one in a million patient who actually sees their cancer reversed by taking herbs, but I can assure you, Western medicine is light years ahead of these things. Taking herbal remedies is tantamount to doing nothing. It might make you feel good about yourself, but they're just not effective."

  "Is immunotherapy an option?"

  Dr. Ashland took a cautionary breath. "I wouldn't rule it out. But right now, immunotherapy works best on solid tumors. We release a small strain of a virus into your body, and your immune system gathers strength to attack it, and in so doing it will also attack the cancer. But two issues. One is that your cancer has spread to the nodes, meaning the cancer cells have become diffuse and it's harder to eradicate. But also, immunotherapy's a new treatment, and we're experimenting here. There have been cases where the immune system has overreacted to the virus strain, so much so that it can also overwhelm the body, to the point of possibly being fatal."

  "Meaning the cure is worse than the disease?"

  "In some ways, yes."

  "Okay," I said, continuing my mental checklist, but sensing a growing discouragement taking shape inside me. "And how much good does a positive attitude do?"

  "Actually, that means a lot," he said surprisingly, and getting my rapt attention for a moment. "In terms of quality of life. The way in which you view treatment is important. It can be the difference between tolerating side effects and being overwhelmed by them. But in the end, it all comes down to the efficacy of the drugs. Will they work on you. We've entered the era of personalized medicine. We just need to figure out which drug will work best on your tumors."