ABSTRACT
Living with pancreatic cancer is always an adjustment, an attempt to find balance and direction in a world of the sick and the healthy. It is also a journey into unknown territory, a search for beauty, a battle of life against death, eros struggling with thanatos. In this narrative, you will find personal details of the life of a pancreatic cancer patient, his daily struggles, his treatments, his medications, but you will also find his search for the meaning of life itself embedded in his unfolding story, his attempt to come to terms with the questions of why we live and what we might consider to be a genuinely fortunate life.
What makes cancer so interesting is its complexity, its resistance to a scientific definition of itself. It is filled with surprises, intrigue, the very stuff of life we might say at first, but then quickly withdraw such absurd assertions. Cancer is not life, but death, the malignancy that lurks in our body long before we are diagnosed, lingers unseen and undefined from the beginning. We wrestle with it just as we wrestle with death, from the start.
I am surprised that the doctor is calling within an hour of the computerized axial tomography (CAT) scan, an apparently innocent review to check a mild abdominal pain, a straightforward confirmation of the endoscopy I had a week earlier: “Most likely acid reflux,” the good doctor had said then. That's not what he says now, though, when I listen to him on the phone.
“It looks like a significant mass in the pancreas,” the voice says. “It's hard to tell about the liver. Why didn't you agree to use the dye?” I am not sure why I didn't, but the voice agrees it doesn't really matter now. Little doubt, it's pancreatic cancer.
A week later it was all confirmed at the Massachusetts General Hospital (MGH).
It is a time of imbalance for me, hallucination, imagining I have only a few months to live. “What book would you buy if you walked into a bookstore thinking it might be the last book you ever read?” a friend asks. Who needs friends like this? Only in a nightmare, I think. But inspired by the question, I buy Mortality by Hitchens, a book about his own struggle with terminal cancer, his disease brought on by excessive smoking and hard liquor, the origins of mine apparently random, haphazard, accidental—you know, the contingencies of life itself.
I am drawn to Hitchens's idea that one of the problems with Stage IV cancer is there is no Stage V. That seems just right. You want to stay on this side of the abyss, not fall over the edge, skirt the borders, stop short of dropping into the emptiness of Stage V, the nothingness of that territory that does not exist as part of mortal life. But you also know what a delight it would be, a moment for celebration—freedom, liberty, expanded opportunity—if you could just get back to Stage III.
I completely missed Stage III, and apparently II and I, as well. Nobody told me I was there, so I didn't have to adjust. I didn't know any better. It was as if I had forgotten there were stages to consider. Now it's as if I have suddenly jumped from a normal healthy condition right to the strange and bizarre world of the terminally sick. And how long will it be before I fall headlong over that last cliff? Please don't push me.
I am “fortunate,” though. Yes, I am “fortunate,” especially when I use the language of the healthy, language riddled with cliché and absurdity in such matters. Oh, yes, I know, you might say I am not at all “fortunate” to be caught in this bizarre prison of Stage IV, unsure of myself, where I am going, what I can do, but nevertheless I am “fortunate”: “Fortunate” to have arrived at the MGH Pancreatic Cancer Center, “fortunate” to have forged a path that led from the compassion of the just retired physician Bernie Asekoff to Catherine Casey, a concerned and generous gastroenterologist who performed the biopsy on me and who, in turn, “fortunately” arranged an immediate appointment for me to see the chief of oncology, Dr. David Ryan, who, in another favorable turn, has proven to be the kind of smart and caring doctor most of us can only dream about these days.
It looked like I had the typical kind of pancreatic cancer. The preliminary review seemed clear: the mass on my pancreas was large, malignancy in the liver, as well. “I've scheduled an appointment for you tomorrow morning at 7 a.m.,” Casey said after the biopsy. “I know how difficult this must be.” I could see she was waiting for me to reply. Almost as if she were on guard. My immediate response came quickly: “Is he the best?” “I knew you'd ask me that,” she countered without hesitation. She knew me, and she was prepared. “He's the chief and director of the pancreatic center,” she seemed pleased to tell me. I was pleased, too.
Yes, it was good “fortune” the way the winding path brought me face to face with Dr. Ryan. World class. “You've got various options,” he said the next morning, as he spent a substantive 2 hours reviewing the situation with my wife Linda and me in the kind of cubicle size office that most doctors seem to have these days. “You could start chemotherapy up here in Boston, if you want to, or you could do it down there in the South Coast if you prefer,” he indicated, handing me his card with his private cell phone number on it. “But in any case you should probably go see your lawyer,” he claimed. “Hope for the best, prepare for the worst.” Balanced advice, I thought. His trademark, as we soon discovered.
At his computer, he wanted to show us the pictures from the CAT scan to help explain my condition, but Linda and I couldn't bear to see such visible evidence at the moment. Dr. Ryan was kind and gentle, compassionate yet straight talking. At first, he thought maybe I should get a port inserted into my body for future treatment, but then he thought again—he was always thinking. “Why don't we wait until the final results from the biopsy come through in another week or so,” he suggested. “I think we should stick with him,” I told Linda after the appointment. She agreed.
Linda and I went to see our lawyer, review our wills, avoid probate, make sure that our estates passed smoothly to Linda and then through her to our son Jeremy. Our lawyer was shocked, at first, to hear the news, but then calm and solicitous, he made the appropriate changes, adjusted the financial documents. “What if we both die at the same time?” I asked him. “Then Jeremy should come in to see me,” he responded. “He's a good lawyer, you know. Nothing to worry about in that regard. And you both look so good anyway.”
A week later, around dinner time, Dr. Ryan called from the airport after a long day in Washington, DC. He had been busy all that day in meetings at the Capitol, but hadn't forgotten us, periodically checking to see if the final results of the biopsy had been reported. “I have two people checking the details,” he had told us earlier, and this was the day they should be finished with their report.
“I have great news,” he sang out as soon as we connected, Linda on one phone line in our kitchen, I on another line on the back porch overlooking the valley. He had just gotten the final results of the biopsy. “It's great news,” he said again. We could hear the pleasure in his voice. It was indeed extraordinary news, life-changing. “You don't have the standard version, but the rare version.” I asked him to repeat that again, to make sure I had heard right. It was confirmed. Linda immediately sent off an e-mail to all our friends announcing the results. “They want to hear the good news, I'm sure,” she said. It was indeed “fortunate.” All week it had seemed grave, but it was time now to dance on that grave, celebrate.
Yes, it might actually be some time before burial. I am one of the “fortunate.” My cancer is advanced into the liver and bile duct and so unresectable. But the good news is that it is unusual, call it “rare,” only about 2–3% of pancreatic patients have what I have: an anticipated low-medium tumor growth, neuroendocrine tumors. Not the aggressive “standard” variety, but islet cell carcinoma. The common type, adenocarcinoma, is more likely to kill you before the year is gone. No need to purchase a shroud just yet, but I knew this was far from over. It was just beginning, as if I had just ventured into difficult territory without a compass or direction. I'd count on the good doctor to be my guide.
I plan to get my first treatment, an injection, octreotide, on Wednesday, October 14th, 7 weeks since the initial diagnosis. The hope is that the injection will help retard the growth of the tumors. I seem to be doing well, but then, suddenly, everything changes. A couple of weeks before the scheduled injection, it happens. I am taken from my home to St. Anne's, the local hospital in Fall River. Blocked bile duct, they insist. Fever spiking at 104 degrees. Kidneys beginning to shut down. At the time, I didn't realize the full implications, how sick I was, but Linda and Jeremy did, as they hover over me at in the emergency ward. “I've got to get this medical staff focused enough to send you up to Boston,” Linda claims. “Call Ryan,” I quickly replied. Just then, I had little sense of how toxic my body had become, how close to the edge I was. Stage IV needed immediate attention, and Linda on her cell phone with Ryan got it all going.
It was late on Friday when I arrived by ambulance at the emergency room (ER) at MGH, the beginning of the weekend, a time that offers the full spectrum of urban life. It was nasty: police with billy clubs in uniform, drug overdoses, knife cuts, bullet holes. I was “fortunate” to be there, though, liberated from the limited treatment at the local hospital back in Fall River.
When I finally got to my own room, about 11 p.m. that night, I was surprised. I thought I was dreaming, as if I had arrived in a luxurious suite, brimming with ecological balance, health and well-being emanating from the walls, from floor to ceiling. At midnight, the view out across the Boston skyline was breathtaking: tall buildings like shimmering glass glittering with light, glowing in the distance, illuminating the city. And my nurse, like an angel, seemed to hover over me all night; whenever I opened my eyes she was there. “They'll do the procedure on your bile duct in the morning,” she told me. “Put in a stent. You should be OK in a few days.”
She was right. After three long days at MGH, they had control of my body, the fever subsided, the infection all but gone. I came home, an hour away from the hospital, weak and worried, fatigued, and not sure if I could return to my literature classes at the university, but I was determined. It took a few extra days to regain my strength and stamina, my confidence as much as anything else, but I did return to my work at the university. I had quickly returned from the dead—no shroud in the immediate future—but acknowledged then that the cancer at any tick of the clock could take a sudden turn for the worse.
At first, I was not able to stand up in front of the class (my preferred method the last 40 years), dizzy when I got up from my chair, stumbling around the room to collect quizzes and connect with the students. But I was pleased to be back on the job, happy that I could still contribute to the public good, glad to participate in conversations about literature. A week into it, I felt stronger, more secure, stood up near the blackboard in the first of two back-to-back classes, felt energized, although probably only 80% of my usual self. “What's your pain level?” the medical staff might ask. “Oh, about a 4,” I might reply, “on a scale of 1 to 10.”
But then something again startled me. I had been taking painkillers, antibiotics, not eating much in the hospital, and had continued that routine back at home. I had not lost any weight, although I was sure my weight should have dropped given the condition I was in; but the bathroom scale had been surprisingly consistent in its reports—no weight loss. Then, one day, the scale suddenly claimed I had lost about 8 pounds since the previous day. I was sure it was a fluke, a mistake, the battery must be dying, I guessed. But the next few days the scale insisted on flashing the same reduced numbers; I had no appetite, food seemed irrelevant, I could hardly look at it. But I was no hunger artist just determined to eat through the nausea, and so I did what I could: stuffed myself. For 3 days, it didn't seem to make any difference. I was imprisoned in Stage IV, I reminded myself. If not headed straight for the abyss, at least in difficult territory.
On the Internet, a locus for constant misinformation and paranoia, I read about weight loss and pancreatic cancer, muscle reduction, the cancer itself feeding on the muscle tissue. I read about something called “cancer cachexia”—a complication of cancer with unintentional weight loss, muscle wasting, loss of appetite. I wondered if that was what I had. I tried Ensure, which made me sick, then switched to high-calorie smoothies—thanks to Linda—and, in general, pushed an excessive calorie intake. It worked! Over the next week, my weight returned to a reasonable normal, and I began to feel more energetic, relieved, gained nearly 20 pounds. I was satisfied, if not crazy. Numbers ruled my life.
I begin my monthly octreotide injections, one in October and one in November. The injection works, if it does, on hormones. It is an artificial hormone, simulated, mingling with the natural hormones in my body, I suspect, trying to trick them in some way. It is tricky business, but it might retard the growth of the tumors, in rare cases even reduce them. I felt much better for the first few days in October after taking the injection, so I read this as a positive omen. But after a week or so, I was back to my previous state, distressed intestinal tract, frequent naps, and general anxiety.
After the injection in November, I don't experience any significant change in my body. “Maybe we should consider injections every 3 weeks,” I suggested to Dr. Ryan, based on my hunch that nothing was happening. “Or maybe we should up the current dose.” He shook his head “no” at both ideas. “Three weeks wouldn't make any difference,” he said, and we're apparently already at the highest dose. So, thank goodness, we continued on.
I planned to get my December injection in Palm Beach Gardens, Florida, where Linda and I have a small two-bedroom condominium with a view from our porch of a calming lake in the distance. Near the end of January, when we returned from winter intersession for my next round of classes, I will take another injection at MGH, and, at that time, a CAT scan to measure the size of the tumors and determine if there are signs of growth. If the current injections are not working Dr. Ryan will probably suggest a regimen of chemotherapy pills, an event I don't look forward to—something that will bring on uninvited side effects, I assume.
At home, sitting together in our living room, the ceiling arching its way to the second floor, Linda and I watch a couple of television shows with one of the main characters suffering from terminal cancer. In one, a mother is at her last Christmas gathering with family. The next Christmas she is no longer there; her flesh rotting under the ground, I assume. Everyone feels her absence. To me, death now appears to be like a disappearing act. One day you are here, the next you are gone. Perhaps a memory to a few. A revenant. A ghost. An empty space. Yes, I know how sentimental this can be. But let me tell you, at least I don't cry yet when I watch family commercials.
I am “fortunate,” and I am reminded of the three-pronged advice my friend's father gave him a long time ago: “Be lucky,” he said. “Know it's always loaded.” And, “Stay out of jail.” Good advice even now, I believe. But, at times, I sense the loosening of ties to this world, a distance from my friends, less collegiality. And my small family makes me restless. I wish it were bigger, large family celebrations, a lot of hooting and good times, robust, loads of children and grandchildren, a bulwark against the end. “Get some antidepressants,” Linda insists.
It is foolish to actually believe that I would feel more stability if I knew with certainty that I only had a few months, perhaps even a few weeks, to live. If I had the “standard” version of pancreatic cancer, with which you are receive heavy chemotherapy, lucky to be alive after 6 months, I am sure I would be run over with profound anxiety, fear and trembling, terror. A psychiatrist would order an antidepressant, no doubt.
But, foolishly, perhaps, I believe the uncertainty about my “rare” condition is fraught with its own pitfalls, its own distress and fatigue. For me, it's difficult terrain to negotiate. Yet, I carry hope with me, hope that I will improve, hope that my stomach will return to its iron-clad condition of good health, hope that I will forget that I am tired, breeze through the day, well into the evening, without undue care and concern. Yes, perhaps my “fortunate” condition is about forgetting. I am the lucky one. I need to believe that.
Admittedly, death seems at a distance, although once in a while, it moves too close, frightens me in the night, like a winged chariot whispering that it is not that far from my bed as I doze off to sleep. I am in limbo, a liminal state; I could live for many years, could improve rapidly, or could take a nasty turn quickly, find myself in a sudden downward spiral, close to my own grave plot before I finish my own version of the story.
People do not seem to know what to do with me. I look fine, if not fit, healthy enough for a man my age. Why do they need to inquire about how I am doing, how I feel, what they can do to help? I am not sure I want them to; but, of course, I do. I am at a distance from them, not eager to go out, to attend parties, large gatherings, to socialize more than necessary. But I want to remain involved, engaged. If I want to forget, I don't want to be forgotten. If hope keeps me going, I hope it's not preparing to betray me. But I want to know: Why not just make me feel better, dear God, more energetic, more enthusiastic about the present, more involved, more willing to embrace the promise ahead? It's up to me, I know, but it's as if I am on a television show, a rerun, and death, lingering in the distance, is the last act.
Linda and I are down in Florida, intersession, arrived a couple of days before my 71st birthday—December 16, 2015. We went to the Kee Grill on my birthday, a top shelf restaurant with a wonderful main room, long and lovely, tables set neatly apart, a subdued ambience with plenty of space, charming waitress, spectacular. Had shrimp scampi and a Corona beer, the only alcohol I have tasted since being in Florida. Although I am concerned about irritating my liver, I recall the generous advice of Dr. Ryan: “A few glasses of wine or beer won't make any difference.” I am not sure if there was any irony in his comments, but I respect the good advice.
I don't enjoy going out to eat much with anyone but Linda. It seems too much for me, too much pressure to be friendly and talkative, makes me tired, nauseous, at times. Linda says, “You need to take more pills for the nausea, more naps.” Understandably, she wants to go out, be with other people, be friendly and sociable, interact with the capacious world available to her. She grows impatient and suffers from fits of longing for something more.
I am sorry she feels that way, but I need to protect myself, not push myself, not let anyone push me. I simply desire peace and quiet, no stress. I know Linda understands that. She always does. But I am reminded of the time, long ago, when we were all down in Florida. Her father dragged me to the curb, worried that Linda's mother was trying to push him into the street. “She's trying to kill me,” he said. I wasn't sure if he was kidding then, or hallucinating. But the scene still haunts me to this day. Yes, Linda cares. But, at times, it seems to me like an obligation, a duty, rather than a gift of loving kindness and forgiveness. In any case, I hope that she will forgive me for putting her through this turmoil. We all must pay the price for being born, I suppose. But yet it is death, not birth that we usually dramatize. Why is that? I wonder.
We go to the movies to see Brooklyn and Trumbo. I find Brooklyn very moving, a sense of home and romance, valuable and deep human emotions that I shutter to think have somehow now passed me by, lost in the past. Trumbo started slowly, but picked up dramatic strength and energy as it went along, offering interesting information about Trumbo the screenwriter, perhaps the best screenwriter ever, information that I was unaware of.
One particular scene in Brooklyn resonated with me, as well. Old Irish immigrants gathered together for Christmas dinner in an old hall, tradesmen who helped build Brooklyn, uprooted now through the winds of time. One of them rises from his seat and sings an old Gaelic song, in the original language, capturing in its melody the lost past, filled with desire and romance, now gone forever. Call it nostalgia, but it works for me.
Ryan has suggested that I go see a colleague of his while I am in Florida, and so I drive over to his office in Palm Beach Gardens to get my monthly injection and take some blood tests. It takes almost 3 hours to get everything straightened out. The medical team needs to consult with the team at MGH, find out whether the injection should be 20 mg or 30 mg. Apparently the first injection in October was 20 mg, followed in November with a shot with 30 mg. Finally, they give me the 30 mg shot, maximum dosage, as I understand it.
The office staff are pleasant and competent, but it is different than being at MGH, not just in terms of size and scale, but in terms of atmosphere, mood, the feeling of daily life itself. Unlike an academic center, this place reminds me of a business. About 20 chairs in the lab lined up in order for chemotherapy patients. Well-run, but too much concern in the air about building up the office, maintaining the cash flow, keeping the enterprise running. Dr. Ryan is exceptional, no doubt, first and foremost interested in practicing medicine, curious, wants to make a difference, compassionate. This doctor might be like this, as well, but somehow his office seems clouded with business interest. By contrast, Ryan has a clear vision of another purpose and direction. As the chief and director of the MGH cancer center, no doubt he has bureaucratic concerns and responsibilities, but he is not primarily in the “business” of building an office, although he would like to expand the center to outlying districts in the Commonwealth. No doubt there is something to be said for the academic world, the pursuit of knowledge rather than the desire for more information. The “who” rather than the “what.” The complexity of “why” rather than the simplicity of “how.”
Steve Jobs lived for 7 years with neuroendocrine cancer, a fact that the nurse in the office did not know when I mentioned it to her. It wouldn't matter, but she also said I should be able to live, at least, until I hit 100. I hope she is right, but if she didn't know about Jobs, she might not know about me either. And if I am going to live to be 100, I'd like to be more robust, less troubled by turmoil in my intestinal tract. Is that asking too much? Yes, perhaps I will need some kind of chemotherapy to shrink the large tumor in my pancreas, which, according to Ryan, might be pressing against my duodenum.
Some people claim that Steve Jobs could have lived longer if he listened to his doctors rather than striking out on his own. It was in his nature to do just that, of course, be a Wild West pioneer. It was his strength and his weakness. Unlike me, he was not at Stage IV when he was originally diagnosed, was able to have surgery, probably because they saw his disease early. He was “fortunate,” we might say, lucky. But he then treated his cancer with alternative medicine and then when it reappeared later in his liver, he had a liver transplant. Given his compromised immune system, it might have been this transplant operation that eventually killed him. Some other, less radical, treatment on the liver might have saved him. Who knows?
I once asked Ryan if it was the liver that would eventually kill me, as the tumors increased, filling up the space, choking off the functions of the organ. “Probably the liver, but it might be cholangiocarcinoma if we don't pay close attention to any blockage in the bile duct,” he replied, half-joking, I hope, even though I know he wasn't kidding.
I sense a deepening feeling of loss, as if its intensity gathers meaning to it. Partly because of growing old, I suppose. But also because of the cancer, I'm convinced. I seek peace and rest, comfort and security, believing that I know less and less after a lifetime of reading and thinking. I admire the skills of others, am interested at times, in information that might help me navigate through the world. But most people seem interested only in acquiring skill sets, most often related to “how” best to manipulate their screens, or “how” best to choose products in a shopping mall, or “how” best to lower their taxes or drive a nail into the wall without flattening their thumb. I suppose it's my years of being a literature professor that has done this to me. I have never been very interested in that kind of thinking, and it seems that in a system that is so rigged and out of kilter, such thinking always has, at best, diminishing returns anyway. To take great pride in this kind of know-how seems a mistake in the overall scheme of things. Such skill defines our ability to survive, an important competency, but there is a whole other approach to living, I think, one that seems out of fashion now. “Why” do we live and die? That is the question.
I feel an increasing sense of disconnection, a movement that distances me from the kind of joy I can glimpse still only on rare occasions, as if it were a dream now, appearing always as a vision of the past, not any longer on the horizon, perhaps a moment of beauty evoked through music or art, or in an extraordinary passage of poetry or fiction. I experienced it in moments in the film Brooklyn, when that worker at a Christmas dinner sang an old Gaelic song in its original language, or, more recently, when Aretha Franklin sang her heart out at the Kennedy Center Awards Show, in honor of Carole King, her own version of “Natural Woman,” a rendition that brought tears to the eyes of people in the audience, even President Obama. It is the kind of beauty and joy that brings us home, raises us to some more profound level of consciousness, a deep stirring, so awe-inspiring that it breaks our heart. Somehow, it must bring us closer to death, like that song of the nightingale that Keats heard, and the Biblical Ruth; it is perhaps why I want “Amazing Grace” sung at my funeral, why I might just become a Baptist, “why” not “how” gospel singers remain in touch with an emotion and a feeling that knows more than can be said.
I seek those moments in peace and rest now, removed from the idle chatter of a culture driven by the how-to scheme of things, weighed down by the chit chat on radio talk shows, political pundits who know nothing, by the hubris of flashy gadgets, the speed and spectacle of pop culture, the absurdity of Silicon Valley (all that barking about technique and logistics), by the flash of the next big break through, by the busyness of buying and selling, by the plastic credit cards and high-priced cars, by the belief that we can cure death. I am exhausted.
There is no cure for death, most people agree. Perhaps those artificial intelligence (AI) specialists who believe in the singularity, the transhuman, think otherwise, but for now it seems best to simply focus on our humanity, our capacious and ambivalent mortal human identity. Few do, though, wishing instead for something else.
I arrived at MGH that first time, with a black eye, from banging my face on the bathroom floor, and with very long hair, the kind that L.B.J. (Lyndon Baines Johnson) had when he retired to his Texas ranch after being president. He appeared wise then, or at least like an aging intellectual, half out of his mind. I got the black eye when I tried to move as close to the bathroom floor as possible in order to relieve the excruciating pain in my abdomen. I got down on the floor and then tried to gently put my head on the tile as if it were a pillow. At least, that's the way I thought it happened, the way I explained it to others later. In retrospect, I probably did lose consciousness for a moment or two.
Everyone at MGH remarked on the black eye. ”Wow! How did you get that?” they all wanted to know. With my long hair, I think it made me look interesting, even dangerous. My guess is that a couple of nurses might have said something like “Did you see the guy with the black eye?” or “You know the one I mean. The one with the long hair, the guy with the bruised face.” By the time I was released from the hospital, the black color was just about gone, though. So, when I arrived back on the campus, my students only had the long raggedy hair to consider. I got it cut once I felt better.
When I read about neuroendocrine cancers, the publications usually say that with this kind of cancer—unlike the standard version—you can still measure your life in years. With the standard type, you apparently measure it in months, 6 to 12 being the average run, if you want to hear about numbers. Yesterday, I felt lousy: tired, intestinal distress, cramps in my legs, the usual complaints, and I continue to wonder if the octreotide injections are working, have retarded the growth of the tumors at all. Perhaps the injections are not working, the tumors have grown, even multiplied? I am waiting for the next CAT scan in a few weeks that will tell the story.
Stage IV cancer. Locked in, no matter how you look at it, from whatever angle you want to examine it. I don't know when I am going to die, and, of course, most people can say that, even those on death row. But somehow I think it is different when I say it. Not different for others hearing it, but different for me saying it. You might think that is my egotism, my narcissism, blatant self-interest, self-pity. But I think it is different. It is not happening to someone else, it is happening to me. If I had the standard version of pancreatic cancer, I would probably be very sick now, taking heavy doses of chemotherapy, always tired, not well focused on broader issues. At times, I think I will live as long as I would have without the cancer. How long that might have been, I have no idea.
No intimations of rotting flesh, no sign of the stink of death itself, yet I remain on guard, uneasy, concerned that a light beer will inflame my diseased liver, that the cramps in my stomach will again become unbearable. I hope that Linda will still be there to lift me up from the floor.
I'd like to burn with the passion of my work, as I used to do, discover meaning in this strange unfolding of my life. I yearn for a great love, the kind I once enjoyed with Linda in our youth, frolicking on a sandy beach, cruising along a river in France, dreaming together about new adventures. I long for beauty difficult to uncover now, hope that I will stumble upon something surprising and serendipitous, or even better, enchanting. But I feel surrounded by noise, by television blaring, by idle chatter on the phone or in person, mismatched fellowship, the raw fizzle rather than the substance of the thing itself. I could die of boredom, I suspect.
Am I wasting my time? I don't know what else to do, as if I cannot mine the depth of the present, as if I cannot discover myself now, the depth of a flourishing life imprisoned within Stage IV. I have learned a lot in my 71 years, but nothing so much as the knowledge that I know nothing. It is all a mystery to me now, yet I remain convinced that some things are more valuable than others, and they are worthy of pursuit. For me, literature is at the top of that list. But what good is it anyway? Literature can change lives, give us a glimpse of the truth (a fiction perhaps), evoke beauty in its rhythm and style, in its humane language, its telling about life and death. Perhaps that's enough. What more should we require than interaction with the voice of another resonating with intelligent energy?
I had my fourth injection in late January when I returned from Florida, 6 months into it, and I will have a CAT scan at the end of February to determine if the injections have made a difference, have helped to retard the growth of the tumors. If the injections are not working, then I will probably begin chemotherapy treatment, which seems like a turn for the worse by any measure. If the CAT scan indicates no growth, then this might be because the injections are working or, even if they are not, that the disease is very slow growing, minimally aggressive, not making much “progress” (someone might say). I am hoping that the tumors have shrunk, but I will be satisfied with results that indicate “no growth,” a kind of compromise, I think. A way of preserving balance.
The CAT scan can measure the size of the tumor through its digital apparatus, posting on the screen next to the tumor in question numbers for comparison with previous scans. It's about the numbers, I see. Visible evidence. That's the reason I refuse to take my temperature, I claim. I don't want to hear about any abnormal readings—no numbers. “Denial,” you might shout, but, for balance, I check my eyes in the mirror to see if there are any signs of yellow, possible jaundice. I tremble.
I have quit seeing my psychiatrist—something I avoided telling you about earlier, I admit. She had put me on antidepressants. And only held half-hour sessions to talk. I prefer the “talking cure” to pills, so I left her. I also visited the dermatologist at MGH, but he had no new ideas on how to treat my rash and itching, a long-standing eczema that has intensified since the cancer diagnosis.
And, yes, my hair is growing long again, and I am wondering how long it will be before I get a haircut.
Perhaps I should take my temperature. My body often feels chilled, and I wonder if this has any connection to my illness or is just nervous energy. I recall a dear friend of mine who felt cold one night, asked her husband to warm her with an embrace, as they lay next to each other on their soft bed. There was a vibrant twitch then, and it was time. She died suddenly in his arms that night.
I read an article in a book I am using in my graduate course at the university. It discusses how narrative works to counter the disembodied experience of the medical examination. The doctor pushes and pulls, pokes and probes the body from the outside, disrupting the connection between the vulnerable body and a coherent sense of identity, causing the patient to feel disembodied and fragmented, separated from himself. In response to the probing, the patient begins to tell a story to the doctor based on his own life experience, a story often provoked by a word, or comment, made by the doctor doing the examination. It is as if the patient reestablishes his identity through the telling, reconnecting to his body through the language he is using. He builds coherence back into his life from the inside out, not from the outside in. His story helps to reembody his identity, re-present it, after the poking and the probing.
Finally at the end of February, I have a CAT scan to see how well the octreotide injections were working, if they had shrunk the tumor, or, at least, arrested the growth. When Linda and I went to see Dr. Ryan for the results, we were disappointed to learn that the tumors on my liver had grown, that the significant mass on the pancreas remained about the same, but there were no new tumors, a “fortunate” result to be sure. So, the news was mixed, balanced, we might conclude. I will continue on with the injections. “Fail. Try again. Fail better,” I insist, misquoting Beckett.
Dr. Ryan suggests that I start a new medication regimen, Afinitor (everolimus), and keep taking the injection, as well. At first, I balk at the idea, hesitant to begin any type of chemotherapy, dreaming, I suppose, that the next series of injections might work, retard further tumor growth, that the current growth was insignificant, that the injections are, at least, slowing the growth down. It is a puzzle. Are the injections working, or not? Nobody knows for certain. We wait.
Before the end of my appointment, guided by Dr. Ryan, I change my mind and tell him I'd like to get started with the chemotherapy. “You've got time to reconsider,” he tells me. “It takes about 2 weeks to get this all sorted out and get the treatment underway.” The new drugs are scheduled to be delivered through a special unit of CVS Caremark. All seems set, but, obsessed, I make several calls to the pharmacy to make sure they are on track.
“Maybe we shouldn't go down to Florida?” I suggest to Linda, a trip originally planned for Spring Break, but the uncertainty of the side effects from the chemo medication is driving us now. I call Ryan to let him know about our revised plans, that we're on track with the chemo, but not going down to Florida. When he answers his cell phone at his house around 7 a.m.—apparently a vacation day for him—I apologize for the early call, but tell him I just wanted him to know. Unlike the Biblical Job, I acknowledge the need to stay in touch with my comforter.
When the package arrived with the month-long supply of chemo medication, I looked at the plastic covering over the box and began to tear up. How had my life come to this? I wanted to know. The plastic packaging exudes a nasty yellow tone, as if there are skull and bones stamped on it. Poison has entered our home, ready to attack, and I am preparing to ingest it. Where can beauty be found? I wonder, seeking the Oriental rug and the paintings—Picasso, Chagall, Agam—hanging on our walls in the living room, offering beauty and support.
The side effects from the medication are not excessive, but anxiety ridden, I am not eating well, stomach pains, nausea. I check with my local doctor about my unresolved blood clots, a problem from a couple of years ago when I flew to the Azores, and worry about sun exposure, wondering whether exposure in the hot tub and pool in Palm Beach Gardens would cause chemo burn. Perhaps I should sell the condo there, I begin to speculate, and worry again about smoking cigars and drinking an occasional glass of wine: Will that kind of discipline weaken the effect of the chemo medication? “Forget about all this,” my nurse says. She might be right, of course. I seem too often now blind to my own behavior. Perhaps I should have stayed on those antidepressants. It is as if, at times, I am a wreck on an island unto my self, and the earth itself is shrinking, withdrawing from beneath my feet.
I read a report on a clinical trial that claims that everolimus, on average, retards tumor growth for 18 months. The fact that my tumors are growing makes me think the injections are not working, that I am headed in the wrong direction, but maybe the everolimus will help. The tumors may not be aggressive, but, Ryan says, “Perhaps they are not as slow moving as we had hoped.” It is always “perhaps,” though. Wait and see.
I read another study on the Internet that suggests that patients with neuroendocrine cancer of the pancreas can live, on average, about 8 years. That is an average I can live with, although I don't like the way averages rob you of your individuality, your uniqueness, the singularity that makes you who you are. Eight years doesn't get me out of my 70s, but right now I can accept that, especially with the anticipation that new medications will be discovered along the way. Ask me again in 8 years.
Another article in the 2013 Chinese Journal of Medicine recommends radiation ablation on neuroendocrine tumors of the liver, a kind of embolization. “Maybe we should get more aggressive with my treatment? “ I ask Ryan. He shakes his head, “No.” I am not a candidate for such a process, he indicates, although he is excited by a new study in Europe that has had good results with targeted radiation. It should be approved in the USA soon.
Then it happens again. Two fierce attacks of intense stomach and kidney pain send me reeling on Wednesday and Thursday, the last week of March, finally driving me to the hospital on that Friday, for a long and difficult weeklong stay. It is the start of Easter weekend, Good Friday, when I arrive at MGH. No time for celebration, although Dr. Ryan does his best to get me my grand old room, or its equivalent, before he leaves to see his family in New York for the Easter weekend.
I need to prepare for a combined colonoscopy and endoscopy, they tell me, soon after I arrive. A “two-for,” as my friends like to say. When Ryan returns from New York, though, he insists on an ERCP (endoscopic retrograde cholangiopancreatography) procedure, as well, to be sure that my bile duct stent is in place and the duct itself is clear. This means the “two-for” will become a “three-for” (beating out anyone who enjoys bragging rights with a mere “two-for”), but also extending the preparation time for all this to 3 days, a very long time to clean myself out for the surgeon, Dr. Forcione.
When the nursing team finds out about the delay, they are in revolt—having witnessed my struggle in preparation—especially the wonderful Meghan, who has a slightly misguided but very healthy antiestablishment attitude, and whose father died of pancreatic cancer. She is a dedicated and bright young woman, just recently graduating from nursing school, and making her way up the proverbial ladder of medical success. Along with other members of the nursing team, Meghan brings me a vase full of colorful and beautiful flowers to express her concern about the apparent delay in my procedure. Linda's cousin also sends me an array of flowers that seems to dance and sing when I glimpse them across the room. How bright such gestures are. A kind of resurrection, I suppose.
I am at the end of my patience, though. After the delay in the “three-for” was first announced, a disturbing development to begin with, someone comes into my room late that night, stirs me from half-sleep, and then informs me, without any advanced notice, that they are going to move me with all my belongings to a quarantined room. “State policy,” they claim. They are required to do a TB (tuberculosis) spot test on me, and I need to stay in a secluded room with special air ventilation until I am cleared.
I am in an uproar, having had enough already with the delays on my “three-for.” Another bureaucratic absurdity. If I had TB, the hospital was already exposed, and I was certain that I didn't have it. So was everyone else, but their hands were tied, they insisted. I made my protest to the resident on call, and then agreed to change rooms. My hands were tied, too. I needed earplugs to mute the racket coming through the air vents. To confirm my sense of the absurd, though, the next morning they called off the TB test, and then brought me down early to the surgical center for the “three-for.” It worked out as if Easter were on the horizon.
The procedure itself proved to show little of note, although Dr. Forcione did put in a larger bile duct stent, and one doctor noted that the everolimus might be working, since the tumors on the CAT scan actually looked as if they had shrunk. I began to feel better. Earlier, after an ultrasound and CAT scan, they had seen considerable inflammation on my right side near the ilium, but they found no evidence of inflammation during the “three-for.” The working assumption was that my ilium was somehow the culprit, but everything seemed clear now. Had the culprit escaped? Left the scene? Who knew? Despite the absurdities, I was relieved and thankful for the gift of loving kindness and hard work at hand.
My skin has grown very dry from the eczema, which has irritated me for a couple of years now, long before passing through the gates of Stage IV cancer. But in the hospital the frail skin and veins seemed on the verge of collapse, and they remain a constant reminder of the territory I am in. The medical specialists trying to get an IV into my arm always expressed concern that they might be hurting me with their probing, but that concern gave me little solace. Yes, I was a trapped patient, losing my patience, but patient enough to appreciate their determination.
“Why don't you agree to a PIC [peripherally inserted central catheter] line?” one of the doctors asked then. “It would make it more convenient for everyone.” But I was determined to resist, recalling how my son Jeremy had suffered the intrusion after his terrifying spinal trauma, when he was temporarily paralyzed, uncertain if he would ever walk again, how after we got him home we had to bring him back to Beth Israel Hospital one day after Linda accidentally cut the line helping to administer his IV (intravenous medication) in our home. How difficult it was to get a new line threaded back into his body that day.
At home, my stomach looks exaggerated, distended. Surprisingly, I have gained about 15 pounds this week, at a time when I ate practically nothing. My scrotum appears swollen, as well. The extra weight was apparently due to the fluids running from the IV through my body while in the hospital. I was weaker leaving the hospital last time than this time, but I feel more beat up this time, more embattled. I plan to see Dr. Ryan on Friday, get a new chemo medication—perhaps the everolimus provoked the recent attack that sent me there, he speculates—see if we can improve the stomach distension, relieve the pain in my lower left side. The medical staff also claims my glucose numbers are too high, that I have developed possible diabetes from the mass on my pancreas. Fortunately, Dr. Ryan disagrees.
During the ERCP, the “three for,” Dr. Forcione noted two “bumps” on my duodenum, which he biopsied, and we are waiting for results on that, which should be available when I see Ryan on Friday. The suspicion is that they are malignant, part of the cancer. They don't directly interfere with my digestion, though, don't block the tunnels into the duodenum, so for the time being the question of a new malignancy doesn't matter. But I wonder if these “bumps” were there from the time of the original diagnosis. They are in an area that you are not apt to check, but perhaps they represent new growth. Who knows? I wonder, though: When I eat, does the food brush across that area, causing friction furthering my pain and digestive problems? I call the office at MGH, seeking advice. They give me some medication—Reglan and Creon—to excite the digestive process, move the process forward. Creon is a pig hormone, they tell me. Not kosher, I imagine. I wonder what the Talmudic texts would say.
While I was in the hospital, I was also introduced to two attendants, leaders of Team Three, admired oncologists in the hospital working under Dr. Ryan: Dr. Kerry Reynolds, another young and compassionate caregiver, and Dr. David Ting, who seemed to believe my best bet was to enjoy myself. “Get Professor Waxler some cheese burgers,” he shouted out with an energy that impressed. He also took the time to tell me that almost all the current cancer drugs could be traced back to the important government research done in the early 1960s, the last time government officials made a substantial investment in cancer research. An amazing fact, I think, worthy of much thought and an interesting comment on the big pharma world of drugs and business these days. Kerry Reynolds also gave me a good lead, suggesting that I get in touch with Sarah Wakeman, who, at 32 years old, was just returning from maternity leave.
Dr. Wakeman runs the new substance abuse center at MGH, which has been established as a top priority at the hospital. She is a graduate of Brown University, my alma mater, and Linda and I planned to meet with her after my appointment with Dr. Ryan on Friday. We have been concerned about heroin addiction since our oldest son, Jonathan, died of an overdose some 20 years ago, and like us, as we discover at the appointment with her later, Wakeman seems deeply committed to the notion that harm reduction needs to be central to any approach to the opioid problems today—all those poor souls overdosing at an alarming rate. She also agrees that the battle to reduce stigma and shame is crucial to change current perspectives and policies on drug addiction. We need to stay in contact with her, and people like her who work each day to save lives, people who uplift all of us.
I am also reminded again how incredible the nurse Meghan was, especially when it came to dealing with the 3-day preparation leading up to the “three-for.” The so-called “top hat” in the toilet always embarrassed me, the smell of stools and excrement demanding attention, the intimacy of the body, the discomfort of the “inspection” process, the “cleaning out” of the system, all this a grave reminder of the vulnerable mortal self, that Meghan, one of the youngest nurses, was able to make light of, dance through, appropriately joke about, encourage me to continue on. I appreciate her tact and exceptional gift of kindness and forgiveness.
It has been about 4 months since I was in the hospital that time with fever and pain. Concerned that the everolimus might have been the culprit, Dr. Ryan stopped the everolimus, put me then on a new chemo regimen back in April. Two weeks on chemo pills and 2 weeks off. I now take something called capecitabine for 14 days with a tougher medication called temozolomide added for days 10 through 14. Then I am off the medication for 2 weeks, to allow time for the muscle and tissue to recover, and then back on the drugs for another 2 weeks as the chemo builds and accumulates in my system. I have had a few late-night attacks, brutal pain in my abdomen and kidneys, sending me reeling to the floor in our bathroom, but most days, especially on the off weeks, I have experienced only mild discomfort.
One stretch I felt nearly back to the time of those days of good health, those glory days back on the other side of the border. But one night, I frightened Linda and myself. I couldn't stand up, stumbled from the bed to the bathroom, dropped to the floor, then my eyes closed as I passed out. I was unaware that Linda had called our neighbor, a retired nurse, who reassured her that I would not die that night, as she stood by Linda, hovering over me, while I remained unconscious.
I continue to take the octreotide injections once a month, as well, although there remains no clear sign that they make a difference, except perhaps to the drug company. The cost of the shot retails at $20,000, adjusted to $12,000 wholesale, each time it's administered. Thank goodness for insurance.
Cigars remain high on my list of dirty pleasures, and although I remain concerned about their working against the chemo, I find solace in Dr. Ryan's reassurance that they will not do much harm, and I like to believe him, my comforter.
In May the flowers begin to bloom, and by early June, after three rounds of the chemo regimen, I take another CAT scan to determine if the new drugs are working. The next day I go with Linda to see Dr. Ryan in his office, and he immediately gives me the high sign: two thumbs up. It's great news by any measure. The numbers indicate the tumor is shrinking. I couldn't ask for anything better than that. I am relieved and pleased. Linda is ecstatic, the eternal optimist. “You should be overjoyed,” she says. I am happy, of course, but I suppose I am concerned that the winged chariot is still whispering at my back and not going to let up and turn around. Stage IV is still Stage IV. I need to keep a balance, I think then.
I know how difficult all this has been for Linda, her broken expectations of what life could be. Such knowledge makes me sad, although I am trying to do what I can to fulfill her promised life. I want to lift that misery from her body. She often cooks poached eggs for me in the morning, warms cheese blintzes for dinner, asking me each night what I'd like for supper, a refrain threatening to become an annoying habit. Nevertheless, I appreciate it. I have gone out to eat often, and I enjoy going with her, but I always feel, perhaps mistakenly, that she would prefer going with others, too, especially her good friend Donna, and for me that is often difficult, although I also know that Linda realizes my heartache. I wish I could do more to bring her joy and comfort, find a beautiful new adventure for both of us. “Oh, poor baby,” you are right to shout out. “Get over it. You should take her dancing. Take her on an ocean cruise.”
Yes, I can sense the tension emanating from Linda's body and from the increased volume in her voice. Then, all of a sudden, in the beginning of July, Jeremy is taken to the local hospital, rushed there with blood clots in his kidney and spleen, a diagnosis of atrial fibrillation, as well. I want to do what I can, but what can I do? I go visit him, call him on the phone, but it's really Linda who spends the time comforting Jeremy in the hospital. Linda is in charge, but it is, I think, more than anyone can bear. I can only ask for forgiveness for what I cannot do, what no one can do. I am confident Jeremy will recover, though. And he does.
Linda and I continue to watch television each night, starting around 8 p.m., and I find that consoling, although I fear I am just biding my time. For me, the comfort comes, I believe, from just being able to sit in the same room with her. At times, I imagine she would just as soon be alone.
Linda goes out with friends, though, and I go out with mine, mainly for lunch, and this, too, is difficult, calls on more energy than I sometimes have, but yet it reminds me of the importance of maintaining connections, fellowship, friendships, which I find deeply significant in my attempt at balance. I enjoy smoking that cigar while reading and writing, but it is as if without the cigar, the nicotine high, the inspiration and concentration diminishes; yet I crave the company of others, as well, meaningful conversation when I can find it, not idle chatter, but the rhythm of language itself, the wrestling with ideas, even worthwhile opinions, the uplift of literature in motion, and talk for the sake of human companionship, the life blood necessary for life itself.
Teresa McDonell, the nurse who works with Dr. Ryan, his trusted assistant, has also been helpful, especially in the last month or so. I am doing well, and the treatment now seems routine. I know I should take all this as a good sign, that I am headed in the right direction, I am doing well. Yet, I keep thinking: “Prepare for the worst; hope for the best.” Ryan had said that a long time ago.
“You look great, everyone agrees.” I will have another CAT scan at the end of August when I complete the fifth round of my current treatment, the second 4-week sequence since the last CAT scan. That will be in about 5 weeks. I am hoping it'll show steady improvement, although even if it simply shows that there has been no growth in the tumors, and no new tumors, that too will be cause for celebration. Teresa McDonell mentioned if all is well, I might be able to take a ”vacation” from the chemo treatments, perhaps for a sustained amount of time. That made Linda very happy, and I hope, of course, that will happen. We need to wait and see, though. If it's good news, we'll go over to the Liberty Hotel, adjacent to MGH, and order two lobster pizzas.
I suppose it is the waiting, always the waiting—for what exactly I don't know—the waiting that is difficult, the endless uncertainty, the torturing speculation, for no good reason, that makes this so difficult. I'd like to just get over it and live. Forget it all. There is no reason why not. I hope for the best for Linda and Jeremy, and for myself. We are in this together.
I need a project to focus on. And I have just signed a contract for a revised version of Losing Jonathan, a book I wrote with Linda about our beloved son Jonathan who died of that tragic heroin overdose some 20 years ago. I am also working with Martha Pennington on a new book called A Future with Books, which we are waiting to hear about from publishers. I'd like to nail down a contract for that book as we wait for a reply from readers at Bloomsbury on its value. We do have one publisher, McFarlane, which has agreed to print the book, more or less, as is, and Routledge has expressed interest, but they seem to want a number of many changes, arguing the book is currently too long for their publication criteria. So they want us to cut the book and also want some additions: a dilemma.
I also wrote an Op Ed piece for the local newspaper, mainly to stay in the game, I think. It advocated for local heroin injection centers, public places where people can gather together and shoot up under the watchful eye of medical professionals, reducing the harm from those overdosing on the bad mixture of drugs out on the streets. I met with a few other advocates after it was published, but was disappointed with the overall response to the essay. It was too radical, I understand. We will wait and see if anything comes of it.
Addiction is not like pancreatic cancer, we might agree, but after recently reading three important books on addiction—The Biology of Desire, Chasing the Scream, and Unbroken Brain—I am reminded that cancer was once thought about much as addiction is today. We do not really know much about what addiction really is, and there was a time that this was true for cancer, as well. I'd like to be able to do something about this, but I fear the most we can hope for are baby steps in what might eventually prove to be a better direction, a direction that softens the stigma imposed on those who are struggling with such diseases. This is a project I'd like to contribute to, perhaps with the help of Sarah Wakeman at MGH.
Deep into July, midsummer heat and humidity linger in the air; a cool breeze can be found, though, on our front porch where, thanks to Linda, I sit in a new wooden chair, painted white, padded with pillows, patterned in blue, my favorite color, as I smoke an Ashton cigar, with my long hair crying out to be cut, or at least trimmed. In the midst of the afternoon breeze, sparrows scampering across the lawn, I write on, transported, although I do not know where I am headed.
I suppose it is the sublime I seek, the aura that emanates from the motion of the flourishing weeping cherry tree before me in our front yard, if I could only see it, or sense it, or intuit it, or, perhaps best, imagine it, not an illusion, but an elusive reality, the sublime set before me, something as genuine as the aura of fine leather from Florence, the emotional presence of Michelangelo's Madonna and Child, or the movement of the young man in the lenticular Jeremy Walking with Coat, created by Julian Opie, a work hanging above our fireplace, mindful of my son Jeremy when he could not move after his spinal trauma, and then when he did saunter across the Tufts University campus in snowy December as an undergraduate, boldly refusing to wear a coat, claiming he was warm enough as is.
“Lives of quiet desperation.” I sense what Thoreau might have meant. We are broken people now, sharp and scattered shards, desperate and bored, seeking sensation, the impossible moment of fulfillment and flourishing, which only comes to those who are “fortunate” enough to hook onto their passion, ride it to the stars of a meaningful encounter, meet “fortune” when it comes their way, an opportunity to lift up another, a friendship, a love that endures, an acknowledgment of value achieved through struggle for a worthy cause; not the giving of lucre but of the self, a sacrifice that glimmers with the opening to another, a light that illuminates and heals the broken, brings the shards together again, evokes beauty at the moment of realization lifted from the grave of despair and desperation, the sublime that makes life shine through its possibilities, its brightness, a gift. Those are the “fortunate,” the ones given the opportunity to do what needs best to be accomplished, bringing a spark of justice and mercy back into the world. I want to join in that celebration.
I sit alone on my front porch, listening to the birds singing their song in the shade of a midsummer afternoon, a time scorched by the iridescent heat of the fierce sun beating down on the dry grass, turned yellow, in need of rain, waiting for the summer shower, hoping for a sudden drenching from the heavens, to open to earth now.
Linda looks ahead to the time I can take a “vacation” from my chemo regimen. I do, too, but not with the optimism she projects. Free of the chemo, she envisions, we can go down to Florida and enjoy ourselves like the old days, when I was part of the healthy crowd. Maybe even take another cruise on the rivers of Europe, or China, or even Vietnam and Cambodia. I look forward to such a time, of course, but I also want to be able to tolerate the chemo as long as it continues to reduce the tumors. I don't want to give up.
I dream about a miracle, a report one day soon, based on the numbers, that claims the tumors have vanished, not that I am cancer free, malignant cells still lurking in my pancreas and liver granted, but no visible sign of sickness and disease, no easy way of measuring the disease through CAT scans and numbers. That is the miracle wished for, the impossible dream becomes possible through the imagination, the sublime experienced as the good fortune of health. I applaud the cliché made real to me: “What's most important is your health.” Yes, if you have your health, you have all you can ask for.
But what do I really ask for now? And whom should I ask? Health, lying on the other side of the border, separate from sickness and disease? That's not right, a personification that belies the truth: the intermingling of health and disease, sickness unto death, the living desire to carry on, eros and thanatos, life struggling against death, the organs and flesh speaking out against their own destiny, the inevitability—that is mortal life itself. We all stand at a dangerous border crossing.
“There is a new drug,” they have told me, designed in Europe specifically for neuroendocrine pancreatic cancer. It is currently being tested in a group trial at Memorial Sloan Kettering Cancer Center in New York. The early indication is that it works well, high percentage of success, perhaps the best drug developed so far for the “rare” form of cancer that I have. It appears to be a kind of super octreotide, working as a kind of radiation that targets the tumors with considerable celebration. “It should be approved in the USA within the next year,” they say. I plan to live longer than that, so now, in this late July of 2016, I take that as good news. Who wouldn't? Teresa McDonell and Dr. Ryan, Linda, too, are excited about the prospects. But I am cautious. I do not say anything, but I wonder if the octreotide injections I have been taking each month, which do not seem to work for me, suggest that this treatment will not work for me, either. I can only wait and hope, as I do for the CAT scan that I will have in a few weeks now, at the end of August.
Yes, I am one of the “fortunate,” imprisoned by Stage IV pancreatic cancer. I need to maintain my balance.
Declaration of interest
The author reports no conflicts of interest. The author alone is responsible for the content and writing of the article.