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Living in the Village of the Sick
August 23, 2009
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Our UU forbear, Ralph Waldo Emerson, gave advice on preaching when he wrote: “We come to church properly for self-examination, for approach to principles to see how it stands with us, with the deep and dear facts of right and love….We are not thinking machines.” (The Preacher) It is in that spirit that I dare to speak with you today.
I’m taking my title from a book lent me by a neighbor, who is in the Anthropology Department at Notre Dame. The author, Paul Stoller, is also an anthropologist, who did his field work in Africa and was diagnosed with lymphoma at age 50. The experiences he details in his memoir, Stranger in the Village of the Sick, are similar in many ways to mine, and I like the metaphor of the “village of the sick” for capturing the shared experiences of cancer patients and survivors. My latest entry into the village of the sick began in July of last year, when I went for a colonoscopy. Following that procedure the doctor stood at the foot of my bed, handed me a sheet showing pictures of the inside of my colon, and pointed to one, saying “This is a mass. You have colon cancer. The tumor must be removed. We’ve made appointments for you to have a blood test today, a CT scan tomorrow, and a visit to a surgeon.” I wasn’t really surprised, because my mother died of colon cancer when she was 40. I was 11 then and had been waiting for this diagnosis for most of my adult life. So I said I’d go for the test and scan but would choose my own surgeon, thank you. And I did. Since then I’ve interacted with or sent payments to 21 physicians, all but two of them specialists including a medical geneticist, along with five radiologists and two pathologists whom I never saw; I did have a brief handshake with the four anesthesiologists. I’ll add another doc this week when I see a neurologist for the numbness that resulted from the abdominal hernia found last year by the PET scan – something of a side effect of the cancer, I suppose. I visited 11 provider centers for tests and scans and had five surgical procedures in hospital. But it was in the cancer treatment center run by Michiana Hematology Oncology that I spent most of my treatment time. So far I’ve made at least 33 visits to MHO and it was there that the virtual “village of the sick” became actualized for me during my six months of chemotherapy. That’s quite an elaborate facility. In addition to a pharmacy, a lab, x-ray and CT-scan mechanisms, there’s a huge infusion room, where they may treat as many as 50 people a day, with most of the patients spending several hours each time. Oh, yes, there’s a huge waiting room as well as several smaller ones. The infusion room is divided into eight or nine circular pods, each furnished with five to seven recliners and a few chairs for those who accompany patients while they are hooked up to the plastic tubes that run from the packets of chemicals hung on poles for the hours of infusion. So there’s a bit of community shared with those stationed in one’s pod and also something of a sense of being in a smaller, semi-secluded spot. Some patients had as many as three people with them; most seemed to be going it alone, as was I. Many, even some of those who were accompanied, spent their time in solitude, lying back with their eyes closed, napping or not, sometimes reading, sometimes with the cotton blanket pulled up to their chins or even covering their faces, often just stoically being there as the nurses moved from one to another. People dressed very casually, as you would expect, and had to wear clothing that would accommodate access to wherever the needle was to be inserted. Many wore baseball caps, some to cover their baldness, with the bills pulled down to hide their faces, each in his or her private world. One of those who kept his head down and face covered reclined two seats away from me. Between us was an African-American woman accompanying him. I began to chat with her when she commented on my Clark’s waterproof slip-on shoes and asked where I had gotten them. She was from Niles, Michigan, and said she was in her 80s and there with her brother. She had had four brothers and this was the only one left. She said she just wanted to be with him as much as possible as he was the last of her family. I talked with her for a while and noticed that the brother never so much as acknowledged her presence – just kept his head down. But whether for his sake or hers, she was determined to be near him, most of the time just sitting there. Few patients spoke with each other, though occasionally there was a gregarious soul who might start a conversation with some other person in the pod. One fellow I met several times; he did like to talk and had a knack for engaging whoever was nearby. One time he was in the pod behind me, chatting loudly with another guy who asked him, “Well, do you wear gloves to bed at night?” “Sure, I wear gloves and heavy woolen socks – but that’s all.” The other snorted – “That’s all?” “Well, sometimes I also wear a sweat shirt.” I knew then that he was receiving the same kind of treatment as I (FOLFOX). I also had to wear gloves and woolies to bed, under a down-filled comforter, thanks to neuropathy in hands, fingers, and toes exacerbated by cold. My routine usually required being there for six to seven hours on treatment day. I would arrive, check in and wait for a nurse to take a good blood sample. Then I’d wait to be called by my oncologist’s nurse. She would take vital measurements, ask questions about this or that, and enter data on the computer before the oncologist stopped in, for more questions, a quick examination, and determining whether the lab report of the blood test confirmed it was okay to receive a treatment. Several times, the white cell count was too low, so treatment was delayed for a week while I had injections to raise that count. After being okayed by the oncologist, it was back to the treatment room, to settle into a recliner and wait for a nurse to start the various drips – first two antimemetics, then two of the treatment chemicals. It ended with a big injection – a bolus – of the third drug that had to be continuously infused over a two-day period. I left wearing on a belt around my waist a battery-operated pump that contained the drug that was delivered over the next 46 hours. The tube from the pump went to a portal surgically placed under the skin near my shoulder, from which another tube emptied directly into a blood vessel. About once a minute the pump whirred and sent a drop that traveled through the tubes. Then I returned two days later to get the contraption removed. I thought my difficulty with getting to sleep while tethered to the pump was due to a subconscious fear of strangling myself with the tube or pulling the pump off the bedside table, but a nurse finally told me the drug itself interfered with sleep. The treatment regimen required 12 cycles of this, spaced two weeks apart, unless my white cell count was low, which required special injections to build it up and delayed the treatment for another week. During my second treatment I sat next to a woman a bit older than I. (I knew her age because the nurses always checked for birthdates when they hung a new bag of chemicals on the pole. I think probably all of us looked older than our chronological age!) Two younger women accompanied her, and when they left to get a snack, she turned to me and said, with a troubled look on her face: “This is my first time here, and I don’t know anything.” I answered, “Well, it’s my second time, so I know everything. What can I tell you? How long will you be in treatment?” “I guess forever,” she said. And then I thought to myself: “Uh-oh, I think I know what that means, and it’s not good.” The most personally trying conversation I had with another patient occurred when one day, as I was leaving, a nurse followed me down the hall and asked if I would return to speak with a woman who had a diagnosis like mine but was not convinced that she wanted to undertake the recommended treatment. Now, I am a psychologist, but not that kind of psychologist. Nevertheless, of course I agreed to speak with her. She was smartly dressed, with attractive make-up and hair style, looking a bit out of place. Her husband was sitting next to her and moved a few seats away when the nurse introduced me. I sat beside her and took her hand. Her doctor had told her that the side effects of treatment would likely abate upon completion, but it was possible that there would be some continuing residual impairment. She wasn’t sure she wanted to live with that as an outcome and was afraid of starting treatment and not being able to finish it. (As it happens, many patients do fail to complete this particular regimen.) All I could do was talk about what I had experienced so far and what I had learned about outcomes with and without treatment and for those of a “certain age.” I listened to her concerns and finally said, “Well, you know, it really is in the end your own decision to make after you have collected all the information you need. The medical folks can recommend, but they can’t give any guarantees. It’s our body, our life, our responsibility, and our right to decide what to do for ourselves.” All the time, I was acutely aware of that husband sitting there, listening but not saying a word. And although I guessed we were about the same age, socioeconomic class, and so on, I knew that her situation was quite different from mine, because her decision would affect not only her own life but also someone else’s, in a way that my decisions for myself did not, as I, and only I, am responsible to and for myself. One reason that was a particularly moving experience for me was that I, too, had struggled with the question of whether I should or would undertake chemotherapy. Once I got the Stage III diagnosis, I knew chemo would be recommended and my own questions and moral struggle began. And here, finally, I get to the religious issues that I hope justify my speaking in this personal way in a Sunday service. You see, I believe that over-population is a major problem for everyone on earth. I believe our resources are finite. I believe that elders must move on to make way for succeeding generations. I believe that many aggressive end-of-life measures are torturous for patients and families and also that they drain resources better spent on those whose lives can continue to have meaning for themselves and others. I believe that quality of life is more important than simply living. And I believe that death is a certainty for all of us – indeed, that the certainty of death is one of those things that give meaning to life. So I asked myself: How can I justify the tremendous expenditure of resources and my own energy, with perhaps the only benefit being the extension of my own life for a short time? After all, I have already lived a good life – good for me and good for some others also. I’ve paid my dues to society – and to the UUA! I’ve had good times along with the tough times. I’ve accomplished my primary goals – except for travel to Madagascar to see the remaining lemurs in the wild, and I’ve recently decided that’s now just too far to go. After all, I have seen the elephants and cheetahs in Kenya and the tigers in India and the blue-footed boobies in the Galapagos. Maybe that’s enough. Further, in this situation as in others, I tend to rely on the universality principle as a moral guide. Which is to say, what would be the outcome if everyone acted in this way? What if everyone jumped the red light rather than waiting for the intersection to clear? What if everyone threw trash out the window as they drove along a city street or a country lane? What if everyone cheated “just a little bit” on their income tax return by not reporting income the IRS couldn’t trace? And what if everyone sought to extend their own lives just as long as possible using every means possible and thereby soaking up resources that might be better expended for the benefit of others? For goodness sake, what right or reason had I to opt for that? Most of all, I thought of our responsibility to the generations that succeed us. There’s much to be said about that – too much for now. But I finally decided, this time, to undergo the chemotherapy regimen – probably more because it represented a big challenge than because it would bring a sure benefit to me. Statistics tell me that I now have a 70% chance for the next four years to be disease free, a 58% chance of being disease free for five years, and a 61% chance of survival for five years. However, that’s based on the entire population of Stage III patients, and older folks have a greater incidence of co-morbities. And I could fall on either side of the probability curve. Who knows? Now, getting down to the real basics: I believe that two major issues, perhaps lurking just below the surface, for those “living in the village of the sick” have to do with mortality and immortality. But these are not things easily or openly discussed. Only once did someone at MHO speak with me of impending death. He said he had terminal lung cancer, for which he accepted full responsibility as a smoker. He showed me pictures of his two teen-age daughters, said his wife had left them when he was diagnosed and that he was in treatment hoping he could hold on long enough to find ways to provide for his girls. “They’re good girls, but it’s a lot for them to deal with.” So what’s to say about dying? Obituaries often speak of the deceased as having “fought a brave battle.” And you have all heard at least snippets of the famous Dylan Thomas poem, “Do not go gentle into that good night.” This was a son’s plea to a father who had been a fiercely independent man, as he watched his father approach death and begin to mellow. Thomas was urging his father to leave life as he had lived it. The poem concludes: And you, my father, there on the sad height,I think I can understand the son’s denial of his father’s imminent demise. But I look at this from the parent’s perspective. I reject Thomas’s saying that “Old age should burn and rave at the close of day.” Certainly I don’t want to rave and end my days in rage. Rather I want only to live a life worth living, and I want to make peace with my parting of this life. I want to go with grace and gratefulness for what has been, rather than futile fighting for what might be or could have been. I believe I have looked death in the face more than once now, what with breast cancer, melanoma, and now the colon business, and I believe I will be ready to go, whenever – I also recall from my teaching days that Eric Erikson, whose life-span theory I covered in the college classroom, once said something like “Our children will not fear life, if our elders do not fear death.” As for immortality: For so many people, the promise of everlasting life, “in the arms of Jesus” or in “paradise,” makes death tolerable – for some even preferable to this earthly life. At times and in some ways, I envy them that sustaining faith. When I was about eight years old I stood beside my father in a small rural church in Louisiana and heard him say to his mother as her body lay in a simple open casket, “Goodbye, but just for now. I’ll see you later.” He really believed that, and it helped him deal with her loss. But I don’t think I believed it even then. And I don’t today. For myself, I have found no reason, nor any need, to believe in an after-life. I appreciate that some of you believe differently. And it is possible, just possible, that I will be greatly and joyfully surprised some day. But until then, I expect to remain a materialist, holding the conviction that whatever there is of “me” and “myself” exists now, dependent upon my functioning brain, and that when that organ goes blank, I shall enter only a long, dreamless sleep – a “good night” after all. So what then does that say about “immortality”? I believe I have already established my immortality. I shall “live on” in the memories of those who have known me, in the on-going functions of the organizations I have served, and probably most enduringly in the scholarly works I have contributed to my professional field. So be it – In conclusion, let me take this formal opportunity to testify to how important you people, members of this congregation, have been to me even as I was living in “the village of the sick” and wrestling with not only these weighty life-and-death matters but also the practical details of everyday, continuing life.
And so – even in the winter when it was so cold that just stepping outside would set off the tingling in fingers, nose, lips, and feet and I ventured out only to pick up groceries or prescriptions and needed to avoid people for fear of infection and a compromised immune system – even then, I continued to “come to church.” And here all of you, if just by your presence, helped me to stay focused on the really important things, the values we UUs share. For all of that and more, I am deeply grateful and thank you from the bottom of my heart, as individuals and as a loving congregation. In conclusion, some months ago I acquired a hanging that I placed on the wall leading into my kitchen where I pass dozens of times each day. It carries three words: Live, Love, Laugh. That’s my motto for now. And now, in that spirit, will you stand and join me in singing hymn # 311 – Let it be a dance we do.
Selected Readings and Quotes Church, Forrest. (2008) Love and Death, My Journey Through The Valley of the Shadow. Boston: Beacon Press. Minister, All Souls UU Church in NYC. Martensen, Robert. (2008) A Life Worth Living: A Doctor’s Reflections on Illness in a High-Tech Era. Farrar, Straus, Giroux. Physician, historian of medicine, ethicist. Stoller, Paul. (2004) Stranger in the Village of the Sick, A Memoir of Cancer, Sorcery, and Healing. Boston: Beacon Press.
“Look at us, for instance, talking and listening this way. Expressing. And we have such a road ahead! It is only at the brink of death that we are truly present for our life. And isn’t that an outrage?” Kate Walbert, A Short History of Women (a novel) “Both Alexandra and Jane were vaguer than she remembered them—deeper into the engulfing indifference that readies us for death.” John Updike, The Widows of Eastwick “People who live only for their children make bad company for them.” Nancy Horan, Loving Frank “The true meaning of life is to plant trees, under whose shade you do not expect to sit.” Nelson Henderson “I am everything that happens after I’m gone which would not have happened if I had not come.” Salmon Rushdie, Midnight’s Children “Instead of getting to heaven at last, we’re going all along.” Emily Dickinson, in The Seeker’s Guide “Confucius once advised that ‘Those who find the way in the morning can gladly die in the evening’.” Ram Dass, Still Here “The final stage of aging is cuddling up to death.” Ram Dass, Still Here “When eternity nears, time disappears.” Santana “If it be not now, yet it will come. The readiness is all.” Shakespeare, Hamlet “While I thought I was learning how to live, I have been learning how to die.” Leonardo Da Vinci? “Gratitude is an antidote to the dark voice of illness that whispers to us, that insists that all we have become is our disease.” Dana Jennings blog (prostate cancer)
Psalm by Elizabeth (name means “worshiper of God”)
Oh, Lord, my God, thou hast made me in thy likeness,
From thy creation has come this world of nature,
Thou didst despair at humankind’s destructive tendencies.
Yet thou art the Lord, and thou lovest thy people.
Oh, Lord, my God, let me grow more like thee.
— October 19, 2005 (one change January 18, 2009) |
| Sermon Copyright © 2009, Elizabeth Scarborough |
