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Over the hill the end is in sight

21 Wednesday Oct 2020

Posted by Czet in Uncategorized

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death, End-of-life, terminal

All has been swimming along quite well, until it stopped.  On October 20, 2020, on the basis of a consultation with our oncologist, I sent the following note to my family and children.  Just for convenience, I’m posting it here for readers of my cancerblog. I expect this may mean more postings from me.  It appears easier to write about challenges than about “swimming along”.

“Mom and I have been busy, busy, busy over here, video conferencing with our General Practitioner, Oncologist, Pulmonary Doctor (with add-ins from Palliative Care, Radiology, our Pastor), etc.

To summarize:

Chemo:  I have, over these last nine years, blown through all the existing accepted chemotherapeutic protocols to combat my cancer.  There are no more medications that can be offered.

Clinical Trials:  There seem to be three Clinical Trials either in startup stages, or seeking qualified candidates.  All happen to be at UCSF.  We’re putting our name on the “waiting list” to get more information.  We’ll see whether any are a good match; whether their likely results are worth the cost of experimentation.

Pulmonary Options:  The Pulmonary Doctors specialize in Lung Health.  They’ve evaluated my CT Scans and know about my coughing.  

There are two types of bronchoscopy available to us.   Neither of these are urgent, but are available on an “as needed” basis.

Palliative Care: The “short” of it is that we can now expect the cancer to continue encroaching on my lungs and making it increasingly difficult for me to breathe.  That’s where Palliative Care comes in.  They have a number of possible “interventions” to help me breathe when I have difficulty.  They can administer such care in the hospital or at home.

Death:  Whenever THAT time comes, we WERE prepared to have a Polish Wake and Funeral Liturgy “with a cast of thousands”.  Because of the coronavirus pandemic, however, that won’t be possible.  No party for some time.  

Timeline:  Typically after stopping chemo, patients have around 6 months.  But—as our oncologist pointed out—I’ve consistently outlasted the statistical expectation chart.  We all hope this continues to be the case.

I share this with you because having cancer has given us the opportunity / necessity to plan ahead in this practical way.  People approaching the end of their life without terminal illness often don’t have this opportunity.  They just suddenly die one day; frequently without notice.  

We have notice.  We have a chance to think about the process as well as the end (or, actually, of course, the new beginning).

Dad

The meaning of illness

26 Saturday Nov 2011

Posted by Czet in Uncategorized

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abnegation, abstinence, animism, backaches, bacteria, bad, behavior, Buddha, causes, choice, chosen and damned, Christmas, context, cosmic rays, Creator, death, deconstruction, degradation, deities, detachment, die, economic hardship, enneagram, ethics, freedom to choose, gift, God, good, grey hair, harmful relationships, headaches, heaven and hell, holidays, humanity, illness, life, lovers, meaning, memories, microbiology, monotheism, mood, morality, mutation, Native Americans, natural processes, now, perspective, religion, shamans, sins, smell, society, source of life, spectra, spectrum, sprains, St. Ignatius, stampeding elephants, stress, suffering, Sufi, taste, thanksgiving, therapies, time, undesired effects, virtues, vulnerability, wisdom, x-rays

Dear Friends,

Summary

I’m embarrassed to be delinquent in posting my weekly blogs. The reasons are manifold: tiredness, nothing novel to say, brain-freeze, postponitis, etc. I’ve been humbled to have received a number of “dunning notices” from readers of these random essays. Forgive me for the former. A sincere “thank you” for the latter.

I’ve been surprised to have become discombobulated about what I considered an insignificant side-effect. It surprised me by its impact on me; greater than I’d anticipated. Some weeks ago, the cumulative effect of the chemotherapies I’ve been undergoing started manifesting themselves through a gradual loss of taste and smell. Now, just as Thanksgiving and the Christmas holidays are upon us, everything I eat seems to taste like unseasoned mashed potatoes. It shouldn’t be a big deal. The effect of the deterioration of my taste cells should simply validate that the chemo is working. Its evidence, after all, that the chemo is likely to be doing the same thing to any fast-growing cancer cells that remain in my body. But the timing of the loss of taste seems particularly inconvenient with the arrival of the holidays. It is during the holidays that the particular culinary smells of the house and kitchen typically evoke so many fond memories. Missing the fullness of those sensory recollections disappoints me more than I expected it would. To make matters worse, my nurses tell me to expect that this condition will persist through to the end of my chemo, 3 months hence.

As I’ve been traveling through my process of confronting cancer, it is difficult not to wonder “What is the meaning of this illness?” It may be the right time for me to gather a couple of my personal perspectives. Though there are many, I’m only going to examine the meaning of my illness through two.

Detail

From a purely medical perspective, my illness can be understood as emerging from only a handful of sources:

Natural Internal Processes. The body ages in ways we don’t completely understand. Some cells apparently have some sort of time switch that, when activated, causes them to begin losing their ongoing “liveliness.” Or the switch simply lets the cells die. Some cells, such as those that constitute our hair follicles might lose their capacity to create or pass on coloration with the result that our hair turns white. Some degradation of other cells may affect our resilience, strength, vision, taste or hearing. Since our bodies are comprised of bacterial organisms by the millions, a change in the balance of those organisms internal to us can be a cause of illness.

External Causes. Another source of illness might be external. Some of our cells may mutate due to cosmic rays from the sun. Whenever we go through the security scanners at airports we receive bursts of energy that can harm our cells. When we board a plane, the flight path brings us closer to danger by our altitude. Even on terra firma, our cells can be damaged when we stand too close to a poorly sealed microwave oven. There are many things in our civilized urban environment that expose us to etherial energy waves. Other toxins to which we are exposed are preservative chemicals in our food or ingredients in the plastics in which our food is increasingly packaged. Contaminants in our air and water can damage our body through external sources.

Psychological Causes. There is increasing evidence that our state of mind has an influence on our health. Stress manifests itself, physically, in headaches or backaches. Stress can also change our moods. These effects are being increasingly studied (not least by our daughter, Krysia, who has taken a particular interest in this arena). Emotions and mood appear to have a strong correlation to health; especially on the rate of recovery from illness.

Social Causes. Moods are affected by realities beyond individual control: by not having a job, by living in a relationship that is harmful. The list is long. There are things we can do but we must be willing to actively confront the source of our problems. Even if individuals are willing to go through such a process, they may find it difficult (or even impossible) to change their situation to eliminate the conditions that damage them. The process can be rocky and painful for many.

To answer the question of the meaning of illness, the medical profession examines these alternative sources of illness and attempts to understand disease better. This has proven to be no small endeavor. Equipped with today’s sophisticated capabilities and tools, scientists and researchers drill down to ultimate structures in microbiology. As they do so, they seem to constantly uncover deeper underlying levels and incredibly complex micro-relationships. These hidden relationships seem to be at the heart of life. Yet what, at the molecular (or even finer) level can be defined as the source of life continues to be elusive to the scientific researcher.

At the other end of the spectrum, science also explores the organism that is our body and mind within a macro-context. There, science examine personality and social structures, hoping to identify what makes us individuals. All our relationships, family, society, culture, have an influence on us as individuals. Scientists are discovering that the macro-dynamics are equally as complex as the deconstructionist micro-examinations.

In the end, defining the meaning of illness in our lives—within an exclusively biological context—seems confoundingly elusive.

___________

Religious persons might explore the question of the meaning of illness from a different perspective.

The vulnerability of the created being. Religious believers often conclude that the source of life is embodied in individual beings. For some, the source of life derives from a Life Spirit. The nature of the Life Spirit is not easily identified, but is concluded to exist from the logic of Faith. For others the source of life is personified in—and discerned through—the form of various deities. Animists believe in the inherent liveliness of the world in which we participate. They ascribe various levels of “life” to all the objects we discern in the world around us. Monotheists define the source of life simply as “God”. God cannot be completely understood by mere mortal mental capacity, but spiritual scholars have enlarged our understanding of a Creator God who is, at once, intimate and present in each of our lives.

What seems to be common to all religious believers is an awareness, not merely of the animating influence of life, but of the essential personal and social imperatives that derive from living. They also recognize a sense of life’s vulnerability. It is that vulnerability that gives rise to patterns of behavior (and mis-behavior). Abstract considerations distill to the practical questions of how one individual, me, lives my life. Religion encourages me to confront the question of how my life (or my sins) impact me or the world around me, if at all. How do my individual choices and actions relate to illness?

One way religion invites us to view illness is through our human capacity to choose. Health requires us to become aware of the effects of our choices on ourselves and on others. Religious insight seeks to help individuals learn to make positive choices. Religion asks us to master our ability to choose, and exhorts us to choose wisely. Every day, we make choices along a wide panoply of spectra. We may be counseled to examine these decisions by religious advisors.

The relation of illness to the freedom of choice. There is considerable literature about the human freedom to chose. It is a challenging behavior to understand. Some contemporary studies question the very notion of whether or not we even possess freedom of choice. The question has been examined for millennia. Ancient Sufi wisdom-seekers took up a study that focused on the traps that lay in the path of choosing wisely. A contemporary form of that practice of the Sufi meditations has come down to us, today, as the enneagram mandala. Working one’s way, consciously and without anxiety, through the structure of an enneagram, an individual begins to recognize patterns of his or her own existing behavior. The goal of the study is greater awareness of self. A further goal is to become more aware of how one can become enthralled (to be a thrall of, or a slave to) to patterns of behavior that somehow contradict or inhibit our becoming free and fully human.

What the Sufis attempted to understand is akin to that to which the Buddha eventually aspired. Buddha came to practice abstinence and abnegation of the self for similar reasons the Sufis sought to rid themselves of barriers to fullness. Buddha sought to become un-enthralled to those aspects of the world (inhibitions and attractions, both) that surround us and falsely tempt us away from our true nature.

Christian writers have concluded the same. Saint Ignatius counsels his students to adopt a radical detachment: “We should not fix our desires on health or sickness, wealth or poverty, success or failure, a long life or a short one.”  The model for Christians is the life of Christ. His life is grounded in trust in God the Father, living a coherent life inspired by the Spirit, and conveying justice, mercy and charity to all who deserved it without claiming anything in return. The living of such a life is sufficient, unto death.

Perhaps because they preceded the rise of science, religious widom-seekers have enriched us across the millennia by uncovering how we are to relate to the world around us, to our fellow human beings in this life, and to our communities and societies. Men and women across the ages have passed on insights on how we form ethical and moral lives. They sought, over and over, to comprehend human life as derivative of the ultimate source of life. They have consistently been guided by the “how?”  we can fully participate in creation. In such a cosmic context, illnesses (spiritual or physical) are understood in a different way, not exclusively biological. What, then, is the meaning of illness in such a broad context?

Through my blogs, I’ve explored a growing awareness of various fears I possessed about which I was previously only dimly aware. Composing these blogs have heightened my attention to the physical (and perhaps psychological) effects of my chemotherapy. I’m drawn by scientific, medical perspectives to concentrate, analyze, and attend to myself in ways in which I was not altogether accustomed. They are ways that are clearly informative and important. They all contribute to my participating in managing my health so that I can more properly assist the specialists and care-givers that have studied and researched the biological illness it is their job to cure.

To look at my illness, alternatively, from a religious perspective is instructive. I’m immediately confronted by the reality that I do not possess my life. I did not cause it. I did not ask for it. I was never in a position to chose to accept life or not. I cannot deny it. My life is a gift. As such, I can glory in it. I can celebrate it. I can live it with passion and joy. I, myself, can share it with others as my own gift. What is startling is that life defiantly resists being rejected. Life, by its very nature, appears to be indestructable, buoyant, optimistic, and forward-evolving. In such a context, my illness is a part of my life.

Perhaps I am well advised, under these circumstances, to learn to ignore my illness. If it is a part of life, it is not appropriate to respond to illness with self-pity. I am capable of letting it becoming a source of detrimental over-concern; too dominant in my thoughts and actions. I don’t want that to happen. In another way, my illness presents an opportunity. Experiencing its effects lets me understand more clearly my own fallibility. Illness can challenge me to think more deeply about time. It may encourage me to reflect upon (to use a phrase from a confessional prayer) “what I have done and what I have failed to do”. Illness may encourage me to live in the now. Thinking of the ultimate effect of a life-threatening illness may direct me to recognize how fleeting is the time I inhabit this body and this world. Meditations of these kinds can help me become more empathetic with those who really suffer in this world. I can exercise ways in how my discomforts can be put to better use to ameliorate or lighten the load that others bear. I can gain practice in being more sensitive to those around me: those who are my care-givers, and mainly those who are my lovers (for it seems altogether too easy to take my lovers for granted and to expect that they share my personal perspective [which they can’t, for they have their own]): my family, my spouse, my offspring, my extended family.

If the meaning of illness is linked to the fact that it can assist me to deepen virtues that are already a nascent part of my life… If my illness can sharpen my detachment, hearkening to the advice of mystics, buddhas, Sufis, native American shamans, and all those who have been passing their wisdom from generation to generation to me… then my illness is not as fearful as it is instructive; perhaps even welcome in such a context.

—–

I’m not certain I can integrate such disparate approaches as quickly as I wish. I only recognize that it is helpful to spend some time within the framework of religious teaching, allowing spiritual insights to mix with physical insights to which I am exposed through the field of medical theory and practice. Mixing both perspectives exposes me to exhilarating lessons that either, alone, might not convey. Together they enrich my chances to live a more attentive human created life from this point on, until the transition of my life through death. Understood through these broader reflections, my death, after all, is inevitable. It will be something I will experience, irrespective of whether the transition is caused by my cancer or by my being accidentally run over by a streetcar, or by the cessation of my breathing at night, or by my being trampled to death by a startled stampeding elephant. Any one of those real possibilities will occasion my death. More likely, some other cause will inaugurate the transition of my life into wherever or however it will manifest itself in the life that persists and may follow this one.

Reflecting on both the medical and the religious dimensions of my cancer allows me to experience it in richer and broader context than would be possible if I possessed only one perspective from which to think about it. In this state of mind, I apologize, anew, for not keeping up with my weekly postings, especially for those who have been interested in them, and who may have employed these missives as a means of identifying that I’m still well and proceeding with personal awareness through this surprisingly rich process.

 Chet

Chemo Infusion 3/12—Life vs. Death

28 Wednesday Sep 2011

Posted by Czet in Uncategorized

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agriculture, black and white, Clinical Trial, collateral damage, confrontation, Dark Night, death, death and life, demonize, depression, Dylan Thomas, emotionally, emotions, extremism, extremist, flush, flush twice, hematologically, liver, mentally, optimism, physically, poison, pollution, protection, scanners, spiritual, spiritually, St. John of the Cross, terrorism, unintended consequences, urinate, white blood cells, why?

Summary

I’m generally of an optimistic disposition. I am at the very beginning of my treatment. But I recognize that, to date, I’ve been writing quite positive-sounding “status reports”. It cannot always be so. Depression must surely be a part of the treatment process if one is at all in possession of a balanced emotional spectrum. And so it was, unaccountably, that I arrived at the Cancer Clinic this morning decidedly depressed.  My feelings were stimulated by no particular incident I can recall. It just happened. Although unwanted (in my case, intensely so), I’ll wager that someone will explain to me that my depression is actually healthy in some counterintuitive way whose logic I trust, but have not yet quite figured out.

Detail

Surely the overriding cause for depression during chemotherapy is confrontation with death. Not everyone survives who has the blessing of cancer treatment. All too many cancers are fatal to the patient. I, myself, know individuals who have died of cancer, some of whom did “not go gently into the night” (as Dylan Thomas cautioned against) and whom I miss terribly. It is tempting to ask the question “Why did it happen?”  “Why, so early?”  “She/he had so much left to give. Why would God (or any other external agent) let such a thing happen?” “Why can’t we find a remedy?” Ultimately, when one pushes such questions to the extreme, none of them have answers… not just “satisfactory answers”; the questions simply defy answering. There are no answers to such interrogations.

We often formulate our depressed questions within a binary construct of black and white (“life” versus “death”). This may have much to do with the exaggerated meaning we commonly ascribe to death. The term “death”, as we use and understand it, is always used in extremis: defined by the notion of terminal, ultimate, final, irreversible; an ending. All of these concepts are fearsome, indeed.

In fact, however, everything we experience in life invariably involves death. It seems as if life cannot exist without death. Living may be, in some fundamental way, dependent on death in order to be life. We experience this paradox in every category. Mentally: If we did not forget, our brains could not deal with the, second by nanosecond, incoming sensations that the brain continually processes. Physically: If we did not slough off dead skin cells, our largest organ would soon fail to protect us against our (perhaps increasingly hostile) environment. Hematologically: If we did not lose our white blood cells by the thousands, how could our immune system adjust to new bacterial and viral threats that possibly hadn’t existed when we were born? Emotionally: If we did not suffer the sometimes deep agony of break-up and separation, would we not cherish, less, the relationships that sustain us? Spiritually: The important books of many religions describe various iterations of what St. John of the Cross called “The Dark Night of the Soul.” In each, emerging from this dismal stage of life invariably leads to a renewed sense of self and ushered in an enlightened belonging in Creation.

Recognizing the relationship of life and death in this interlocked, rather than mutually exclusive way, is shocking. It dispels the comfort of the extremes. Black and whites are easier to deal with than the greys that have elusive borders.  We experience an affinity towards extremes at the individual level.  But we do so, as well, at the social level. Human societies exhibit a terribly unsatisfying tendency to reduce complexity to simplistic extremes, of which the following are simply a few contemporary examples: US Government: in the partisanship  that has been poisonous, in my time, since the days of Newt Gingrich and Karl Rove. International Relations: through the apparent need to demonize any opponent as “the enemy” (evidenced by counting American deaths in battle by every solitary individual, while passing over [as mere “collateral damage”] the scores of death [indeed, numberless scores] of innocent civilians in foreign countries.) Religion: in the condemnation as heretics, those who—even faithfully committed to a different (not even necessarily contradictory) strain of the same religion—adhere to a variable belief or tradition (Shi’ites vs. Suny adherents to Muhammad’s teachings).

I am not prepared to accept my cancer as having equal merit of existence with the benign cells of my body. Its presence is clearly dangerous to me, as are extremists of all stripes dangerous to our human societies. Both must be thwarted in their design. But I somehow resist labeling cancer as death, when cancer cell’s very activity of rapid generation suggests the opposite. It may even turn out that we are (I have been) complicit in stimulating my cancer into being. Associated with this potentiality is the troubling realization that we tend to deal promptly with evidence but might be better advised to reach deeper toward real underlying causes. Humans, after all, possess the option to apply alternative perspectives to all the problems that face us. Rather than deploying full-body scanners throughout our airports that irradiate us (however minimally, it is claimed), we might find it more productive in quelling terrorism if we seriously addressed the reality and consequences of the fact that we, privileged 20% of the earth’s population, consume 80% of its resources. A sustained medical research effort might be similarly productive: to match the emergence of cancers with only apparently unrelated social decisions (such as technological and economic decisions we have made in agricultural settings to adopt a monoculture growing system with its artificial packaging and economically disastrous delivery systems). Such seemingly innocuous decisions with their unintended consequences seem increasingly to be somehow related to outcomes requiring scientific and especially medical intervention.

Meanwhile, as these somewhat inchoate thoughts rummage around in my mind, a cautionary over-abundance of poisons is being ingested into my body. I have chosen to participate in one Clinical Trial intended to provide data on whether a treatment of 3 month’s duration is as efficacious as a treatment of 6 month’s duration (so widely variable are the guesses about what “works best.”)  My liver strains to filter out as much of the excess poison as possible and undertakes to eliminate the most egregiously harmful elements it identifies.  I find I must urinate.  As I stand in front of the urinal at the Clinic (having towed, behind me, my stand of infusion bags, tubes, and monitoring equipment) I am confronted by a thoughtfully positioned eye-level sign which, alas, does little to dissipate my depression.  It carries a worthy admonition and a frighteningly cautionary reminder: “Chemotherapy Patients—Please Flush Twice.” Nurses, Doctors and staff, I find out, are encouraged not to use these patient-designated facilities, but to employ others down the hall.

To make it worse, I cannot help but wonder where it is to which my flushes are directed. I cannot help but worry that our human species—in its valiant and admirable effort to combat the symptoms of a terrible disease—may be, inadvertently, exposing other species (fish, shellfish, sponges, corals, aquatic plants, swimming amphibians and mammals with whom we share this earth), to molecules and substances they have never before experienced nor have developed the necessary protections by which to defend themselves.

Chet

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