What Now?

Dear Friends,

Summary

Writing these reflections has heightened my awareness of how uncertain a task it is to honestly describe one’s emotions. It’s not that I wish to deceive; it’s just that I sometimes wonder if I am expressing what I want my feelings to be, rather than being able to admit to what they truly are.  I do my best; but the question lurks in the background, eventually to be better understood.

As of this morning, there have been scheduled for me, a battery of one-year follow-up tests. I’m writing these thoughts, intentionally, before undergoing the tests. I’m curious how I will feel about these reflections after the test results are returned.

Details

August is an auspicious month for me. It is the month of my birth. In the past, I know I often regarded August with a kind of guilt. Here, came I, into the world, demanding attention and the resources from a more turbulent August. Men and women, that August, were giving up their lives by the score, (even on the very day of my birth) precisely to defend the freedoms, discoveries and self-determinations that were my exclusive self-centered preoccupations as a newborn. I recall one family story—retold laughingly, to be sure; but only many years after the apparent distress/delight of it. My Father had apparently—by some, not small, miracle—been able to acquire a small can of Vienna Sausages in our exile in wartime Scotland. He and my Mom determined to share with me, their infant toddler, a small portion of this precious windfall of scarce protein… only to watch me—all delightedly oblivious of their sacrifice—voraciously gulp down one after another of the compact little cylinders of nutrition, until the very last one was gone. Hearing that story as a teen, I found it difficult to believe I could have given my parents any delight or joy at the miracle of my birth. But they always and consistently communicated just that: that I (and my Sister, who came later—in a more halcyon time—into their lives) were the thrilling individuals who blessed their own lives with a particular joy. They wondered at us and nurtured us, as our personalities emerged and we unfolded as human beings under their good care. What a gift it is to be so loved (despite gulping down a whole tin full of Vienna Sausages!) How wondrous that their love continues and sustains me long after their ministry on this Earth is long over.

Life continues to be a gift. Yet, I also think of this August as the anniversary of my cancer (even though the discovery of my cancer actually was made a little earlier, in June 2011). I’ve just been scheduled for a follow-up colonoscopy and a series of “chest-through-pelvic” CT scans (with little input, I might add, from me… It was just “scheduled, period.” [So,” just show up, Chet!”]). I celebrate the period of a year—which, as Monica explains, “I mostly ‘missed.'” I dare say, with not a little justification, that it was mainly she, and my children, who suffered the greatest anxiety and loss during this past year. My neuropathy has changed many of my habits and behaviors, and continues to inhibit me and draws unwanted attention to itself.

I have been humbled (and nurtured, as well) by my friends. I’ve always recognized that I’ve been blessed to have friends; but never had realized, as much as now, that none of them are alike! Each has personal reactions. Every one responds, fears, grieves and consoles very individually and differently. Every one, in ways that would be intolerably embarrassing for me, were it not for the unguarded sincerity and candidness they each have displayed towards me. I have a shelf-full of amazingly diverse books given and recommended to me, several of which I’ve already enjoyed, and others I expect to enjoy. (The books, in their own right, deserve to be a subject of a future blog posting.) During this past year, too, I have lost a dear friend who was diagnosed at the same time as I, but with a more virulent cancer than mine. I only came to know him more closely through our common trek with our unbidden cancerous companion.

I am looking forward, as always, to the year to come.  For quite some time, I’ve been fond of pointing out that each year I celebrate, turns out to have been the “best year of my life”. It ever must be so if I perceive each and every breath as a gift and an opportunity, as, instinctively, I do (reinforced by the little story of that tin of Vienna Sausages and the context within which I consumed them). The predominant thoughts on my mind, as I approach this birthday, are “What Now?” “What will there be to discover and learn in the year to come?” “Have I changed because of the year gone by?” “What has changed?” “How?”

These call to mind a thought-experiment I was encouraged to ponder as a teenager on retreat: “If you knew that you only had but one more day in which to live, what would you do differently?”

Of course, it’s a trick question expressed the way it is, throwing emphasis on itemizing the things one would do differently. The answer, instead, is aimed at comporting one’s daily life so that it is indistinguishable from one’s last day… so that nothing need be done differently. No regrets for actions taken or not taken. No embarrassment for words spoken in thoughtlessness or anger. No missed opportunity to express, enthusiastically, the joy of life or the pleasurable obligations of companionship. And no cessation, either, of ongoing gratitude for God’s abundant grace.

To be sure, only Saints (and sometimes, I’ll warrant; not even, they) succeed in achieving these goals. Apropos of this, I should mention that Monica and I recently brought home a newly-adopted young dog. She’s a “rescue dog,” named “Gracie”. Without our intending it be so, Gracie has taken to assisting me in my endeavors. It is impossible not to observe that Gracie’s got the solution to the thought-experiment down, pat. It may be more challenging for us, mere humans to master the goals suggested by the though-experiment! Lucky, indeed, then, that I appear to have been given more time to work on mine.

 

Chet

Waiting…

Dear Friends,

Summary

The fact of issuing this second successive blog in so short a time is a decisive indicator of recovery from our bout with cancer. I’ve been thinking about ancient wisdoms as I am slowly emerging from the discomfiting “waiting period” that followed the cessation of my chemotherapy.

Detail

Immediately after terminating my infusions, Monica and I felt a nervous exhilaration that the worst had passed. Unexpectedly, I experienced a period during which an onslaught of side-effects took all of my attention. (It is unusual for many, to experience side-effects after chemotherapy… they usually accompany it. In my case, I experienced relatively fewer side effects during my infusions than my friends did; but the side-effects came along with fair intensity afterwards.) Following that, as my body metabolized and rid itself of leftover toxicity from the chemotherapies I’d undergone, I began to experience a constantly distracting and annoyingly disabling neuropathy. The neuropathy manifest itself in painful extremities: fingers that were numb but simultaneously tingled electrically; feet that gave me the impression of walking on cobbles even though the floor beneath my feet was flat and smooth. Ultimately, my doctor prescribed some medication that numbed the worst of my neuropathy.

Once I began taking the additional medication, my neuropathy began to feel as if the pain was muffled by a pair of good thick mittens. The neuropathy was still there, but felt as if it came from a distance. I haven’t recovered command of my fine motor coordination. I still drop things (although I’ve become more careful in anticipating conditions in which I might be expected to not have a firm grip on items. Often, I’ve noticed, the trick is simply a matter of slowing down a bit, and giving some thought to what I am about to pick up or move; something that, in adulthood, I’ve forgotten to do as often as I did when I was a child.)

Next began the uneasy period of “waiting” that has caught my attention.

• Waiting, first, for some bad news that my cancer had revived and had been discovered again in my body. I awaited such news knowing it would be impossible to learn that my cancer had been cured. There is no positively conclusive evidence of such an occurrence (however hard I might wish for it). Medical science has no tests that can confirm that a cure has been effected. Doctors only possess ones that can indicate failure: that a resurgence of tumor growth or reappearance of cancerous activity has shown up again. So, even if my caregivers observed nothing adverse taking place in my body, my mind wondered if, perhaps, the cancer was still there, lurking just beneath the sensitivity of medical equipment. If so, the bad news I awaited would inevitably arrive.

• Another type of waiting was to see “what would come next?” There have been enough surprises along the path after the initial shocking surprise of my diagnosis, that it seems rational (even for the optimist I am) to expect more unpleasantries. I know this to be true, because, even now, when I tell people that there has been no sign of my cancer’s resurgence, I find myself adding (sometimes sotto voce) “…at least, so far.” I actually dislike this in me. It is both an expression of distrust in what the professionals are telling me, and a kind of superstition: that if I say out loud that “I’m free of cancer!” then the cancer will “hear me” and return. Try as I might to rid myself of such a silly, nonsensical pattern, I still find myself muttering “…at least, so far.” I suppose, at its base, the expression is some kind of subliminal self-protection against potential future bad news… as if I’d known it were coming all along. Whatever its source I don’t much admire it, but accept it as an expression of lingering fear.

• A third kind of waiting I’ve been experiencing is for the arrival of a time when I would feel, again, as I had before all this began. Part of the process of participating in the course of my recovery has been attentiveness to my condition. I’ve written about this previously. But I can’t say I ever previously paid enough attention to “how I felt before”, to have a reliable baseline for comparison with how I feel, now. Even so, I felt a compulsion to try to compare “now” with “before”. “Now” seemed always to come up a little short than “before”. So I continued to await the impossible return of “before”. I don’t like this in me, either. I have always in my life felt that “now” is the best I’d ever experienced. The lesson this suggests is that—despite limitations, aches, and pains—now is the life that is mine to live… and it is still the best ever.

While the concept of waiting dominated my thoughts, I had begun to realize, “time, it was a-wasting”.

In a book he wrote about living with a mentally-disabled child, 1994 Nobel prize-winner and novelist, Kenzaburo Oe wrote about the importance of “accepting things as they are”. I take one meaning of Oe’s expression to mean “…not the way we might want them to be” nor—as is frequent among wisdom-writers—”…not the way things should be (or could be… if only we…)”.

Reading Oe’s phrase “accepting things as they are” helped me to recognize the counter-productivity of an attitude I hadn’t even noticed I’d begun to adopt: waiting (as distinct from living). Waiting, in some illusory way, suspends the present and leaves one temporarily suspended, too. But if life is to be lived, it must be lived the way we find it, not the way we wish it was; and certainly not in a condition of suspended animation, either.

Of course, someone is bound point out to me that “accepting things as they are” will surely lead to passivity. But that would be wrong. Life—as we observe it in all creation around us—is anything but passive. All life flourishes in its own context. Mine will only flourish if I resist waiting and, instead, keep engaging myself as energetically as I can with living. The instinct to wait surely is counter-productive, even toxic, with respect to my illness; as it is with respect to my mental and spiritual well-being.

I seem to recall that Buddha convincingly endorsed the value of living life fully in the present. I’m happy to be experiencing a vigorous return to Buddha’s sage advice.

Chet

“Orare et Labore”

Dear Friends,

Summary

Few historians suggest that fifth-century Europe was an optimal period in which to live. It wasn’t. The old social order, unequivocally imposed by the Roman emperor through his army—fearsome as it had been—had collapsed. Nothing had yet replaced the fallen order. The flux was dangerous. People were generally nervous in the resulting instability. Yet, despite these uneasy conditions, one of the great figures of Western Christendom emerged to write a document on how to live life properly; a document that remains influential today. That person was Saint Benedict of Nursia. The document is known, simply, as the Rule. The Rule was adopted by Benedictine monasteries across the world, and has persisted down through the centuries. Its precepts have been studied and implemented by numerous communities well beyond the confines of the Benedictine order.

I accidentally discovered, for myself, during my convalescence from cancer, one specific value of Benedict’s Rule, his endorsement of labor as a necessary daily component of the balanced life.

Detail

Benedict seems to have been an exceptionally practical spiritual man. Theorizing was not his way. He gave useful advice on achieving balance in one’s life. And he gave instructions on administering community life, as well. With respect to the first, his Rule is sometimes popularly summarized by the words “orare et labore”, for Benedict counseled that an individual’s life should consist of a balance of daily prayer and daily labor.

A prayerful attitude is fostered by an appreciation of “the Other” in one’s life. Humans have sought to understand “the Other” in various ways. I suspect we have managed to misunderstand “the Other” in even more ways. I am blessed with having a keen relationship with whom I understand to be God. I realize that other people may be skeptical about such a notion. For those who are, I would suggest they might consider Benedict’s counsel for prayerfulness as pointing to the importance of self-reflection—not in a self-absorbed or self-referential attitude—but in a humble, objective, consistent and continual evaluation of one’s life on a daily basis.

Benedict’s definition of “labore” is literally much closer to what we, today, call “labor” than it is to what we commonly think of as “work”. Here’s the difference. “Work” consists of tasks and assignments one performs for remuneration. “Work” requires concentration and dedication. It can become addictive for the mental or egoistic satisfaction it provides; just as it can be for the value of the remuneration one receives for performing it. Benedict would likely counsel to not let the work of, for example, administrating a monastery get out of balance with an abbot’s prayer life, or, indeed, of his(her) “labors”.

“Labor” is of a different quality than “work”. “Labor” involves dedication and attention, as does work. “Labor” can also be addictive (perhaps, most especially, as an escape). But “labor” leaves considerable room for being “in tune”. It is usually difficult and manual in nature. It can be restorative.

I’ve already written enough about neuropathy (complained about it too much, is probably closer to the truth). For me, neuropathy is disabling because it interrupted and inhibited my ability to “work” (especially on my computer). It also conflicted with my workshop maintenance tasks. I commented to Monica that it was fortunate that I undertook, early-on, my “screw-sorting” activity. With the present numbness of my fingertips and my poor fine motor control, I never would be able to accomplish that task, today. (I’m assured by my doctors that the neuropathy will pass as my nerves recover from the unintended collateral damage they sustained during my chemotherapy. But the medical experts also caution that it can take months—even years—for the nerves to recover. “It just depends… on a lot of different things.”)

Without blaming neuropathy anew, let me simply observe that while my fine motor control may have been damaged, my gross motor control still functions tolerably well. Gross motion is more forgiving and susceptible to correction than is fine motor control. A few weeks ago I embarked on a little landscaping project in our back yard that unexpectedly became a major one. In the doing, I learned a good deal from Saint Benedict.

The project involved digging some three square yards of stubborn, sticky serpentine clay from a hillside, and shoring up the resulting escarpment with a 5-foot high brick-and-mortar wall. Needless to say, the project took me several weeks, although, at first, I did my best to finish it in one day! The result of my initial enthusiastic (if false) start was a considerable amount of muscular pain in places I’d not felt such pain for years. I began to pace myself and learn when to quit for the day.

As I learned the lessons of labore, I kept receiving little “quizzes” to test my deeper understanding of the subject matter. For example, one morning I came across a little root where I was digging. The little root rapidly revealed itself to be a gigantic one. Dealing with it distracted me for the next two days and slowed me from achieving my intended goal. It reminded me that I was in no race to reach my goal. It helped me find satisfaction in eventually literally uprooting the wayward obstacle. The digging itself, of course, resulted in a excavation pile. The pile had to be bagged for transport, maneuvered out of the back yard and be staged for loading into our station wagon, when Monica had no need of the vehicle, herself. Driving the bags to a permitted disposal destination, unloading them, saving the bags for the next load (and cleaning Monica’s car) were all part of the labor. I won’t go into the details of selecting and hauling bricks the opposite direction, mixing the mortar, and constructing the wall with attention to levelness, consistency and aesthetics. My “little” project turned out to be laborious, indeed.

The undertaking of this labor turned out to have been highly therapeutic. Not only did I experience a great satisfaction, every day, at seeing visible progress towards my goal, but also I was, every evening, physically tired (not to say, exhausted). That improved my sleeping patterns. This was a tiredness of the body in a healthy reaction to exertion; not the stressful exhaustion that came from worrying about my cancer. The labor surely contributed to my physical and mental health, which is improving daily.

Not only did I achieve my goal, but I became more aware that the process was worth more of my attention than was my goal. Concentrating on my goal only stressed me; settling into a pattern of overcoming the individual challenges of the process could be pleasurable. Relaxing into the rhythm of work resulted in achieving my goal. Reaching it, almost came as a bit of a surprise (maybe even disappointment)… the goal, itself ,was far less important than the value of the details, enjoyment and lessons the process provided.

The mental attentiveness to the task at hand—whether it was digging out an inconvenient root or judging the proper viscosity of mortar—absorbed my mind peacefully, driving out unnecessary worries or unanswerable questions. Working with the soil, bricks, shrubs in the comfortable foggy Bay Area weather, or in its bright sunshine, forced me to recognize differences and appreciate the materials with which I was dealing. Picking up a tool—whether a shovel or a spade or a trowel—brought to mind the powerful mystery of tools, per se, in human endeavors and accomplishment. All these (and more) came as ancillary by-products of labor. They could not, as easily, have come from work… or prayer, for that matter.

St. Benedict advised that labor played an important role in a monk’s life, because it provided access to knowledge and understanding in a way prayer did not. Labor had a practical consequence that is augmented by, and strengthens the sincerity of prayer.

The trick, today, is to include “work” in the balancing act of life that Benedict described. Work, since Benedict’s time, has become a dominant necessity in our contemporary culture where money has become a substitute for goods made by hand, or services provided by skilled persons. It’s clear to me, after engaging in my labor, that labor deepened my reflections about myself and my condition, and it animated my prayer life with a certain fresh humility and objectivity. Involving orare et labore with my work should help me not only achieve, but also maintain balance among the three. It feels that way. Surely, I can trust the Saint who wisely counseled making orare et labore central components of life’s balancing act. After all, there are hundreds of communities of men and women who, today, scrupulously (and joyously) continue to follow Benedict’s Rule fifteen centuries after he composed it!

Chet

Peripheral Neuropathy and pickup-trucks

Dear Friends,

Prologue 

The reason for the long hiatus since my last blog posting is that I have been experiencing difficulty accurately touch-typing. For me, this has been extraordinarily frustrating, and personally very discouraging. The experience led to my being more than a little depressed. After spending too much time (by my estimate) in the doldrums, I fired-up a computer application that has been lying dormant on my computer ever since I aquired it in the hopes that it could generate—from the audio track of a completed episode—a printed transcript of a GLOW[1] episode, a task for which it proved entirely unsuitable. The program is a voice-activated dictation application.[2] It works well when a speaker devotes a modicum of time “teaching” it the nuances of one’s particular diction and typical vocabulary. It quite dramatically fails to interpret voices with which it has had no previous exposure or training.

So I’ve devoted the last few days to learning about the program and tutoring myself to master the delicate art of dictation. The program is admirably written and comparatively easy to learn (as much as learning an unfamiliar computer program is ever “easy”). Dictation is a skill that was far more common in the generation previous to mine. It fell all but completely out of use in my “do-it-yourself” generation. It has only been recently revived when computer processing power allowed its complex implementation to be ported onto computer platforms. I’m employing this clever program to generate the text of this blog. It is going remarkably well and gives me great encouragement.

But I’m finding that articulating my thoughts, out loud, constitutes a distinctly different creative process than letting my thoughts tumble around in my mind, in silence, before I commit them to the keyboard. For me, even if no one is present to hear them, speaking my thoughts out loud, before I’m ready, just feels a little like a violation of some of my privacy. I’ve no doubt it would feel differently for an extrovert! Fluent dictation will take some time and adjustment. I am curious to learn what kinds of differences will result from having to verbalize my thoughts ahead of their being written. Creativity, in my observation, has always been inspired by facing constraints, so I’m curious to find what changes are in store for the future.

In the meanwhile, I’m pleased to assert that, in what follows, any spelling errors or typographic faux pas are completely the responsibility of my software. They will not be my responsibility (this time)![3]    🙂

Summary

Imagine a pick-up truck moving along steadily at 30-odd miles per hour. The pickup truck is a metaphor for the regularly-scheduled chemo infusions I’ve, until recently, been receiving. Now imagine that a pile of bricks had been loaded onto the bed of the truck, conveniently positioned by the rear gate. The bricks represent the multitude of effects the chemotherapeutic infusions have had on my body: both beneficial and damaging.

When I terminated my bi-monthly infusion treatments—seven weeks ago, now—I had, metaphorically speaking, slammed on the brakes of my pick-up truck, bringing it to an abrupt stop. I expected that I would immediately feel better. I wanted the ill effects of my treatment to cease as abruptly as the pickup had.

What I’d neglected to consider is that a load of bricks has its own mass and momentum, entirely independent of the pickup truck. This meant that—though the truck had stopped—the bricks would continue their forward motion, sliding along on the bed of the truck until their energy was dissipated by friction (or until they collided with the cab). Simple physics. Why hadn’t I thought of that?

Detail

The particular “brick” that has most bothered me in the aftermath of terminating my chemo infusions is peripheral neuropathy. It is a condition that adversely affects the extremities (fingers and toes, prime, among others). There are other medical conditions that are associated with it, but peripheral neuropathy is a well-recognized effect of cancer treatments. In my case, my neuropathy only really became evident after my infusions were terminated (after the pickup truck had braked to a halt). What’s worse is that the effects, far from being diffused by time, have become increasingly debilitating as the days have passed. My oncologist suggests patience. She assures me that the symptoms will disappear, but prepares me for the fact that it may take months… or even years.

Neuropathy causes the extremities to tingle, be painful and be particularly sensitive to cold. It appears that (like my damaged taste buds) the affected nerve endings at the extremeties of my body send confusing signals to my brain. In my case, my fingers are not sensitive enough to discriminate when they are on the “home keys” of my computer keyboard. My fingers dutifully aim at the correct keys, but seem unable to recognize the physical properties of my fingers to discern (or adjust to) when they’ve lighted on the proper keys. Something similar is true of my feet. I must be especially careful going downstairs because my feet give me the impression of landing on the tread several inches earlier than my physical feet actually touch the step. The other day, while walking across the patio, I distinctly felt as if I were going downhill and executed a little running step to slow down my momentum. Of course, since there was no reason to slow down, my running step looked like part of a little unnecessary dance routine. But, at least, it was not dangerous; whereas losing my balance or trusting in an erroneous depth perception is an altogether possible danger. So I’ve become attentive.

These, and related sensations, can provoke frustration and even anger. I am not prone to anger. I am well aware that my cancer justifies feelings of anger, and that for many patients, being afflicted with cancer likely arouses legitimate feelings of anger. I am not one of these, as far as I can tell. Anger belongs to a fundamental complement of emotions experienced by human beings. But I have never experienced the beneficial effects of personal anger. At most, my anger gives me a temporary relief from some stress. But it replaces my relief with a considerable bit of stress of its own. While I can admit that many individuals may benefit from expressing anger in ways I have not yet learned, anger has never proven (for me) to provide a solution to what may have caused it in the first place. Instead, faced with the kind of frustration and discouragement that peripheral neuropathy causes me, I tend to seek out alternatives that can overcome the limitations of my experience… such as a dictation system that can eliminate or replace my reliance on keyboards.

I’m curious about why it is that I don’t rely on anger as much as others of my friends do. I wonder what it was that dampened the value of this emotion in my personality. I have an early memory about learning to deal with pain or frustration. It suggested an alternative to anger. The alernative was taught me by my parents and was reinforced by the Dominican Sisters who were my elementary school teachers. When, as a child, I became obsessed by things beyond my control; or when I suffered a physical pain that was not life-threatening (but seemed worth exaggerating for the pity it might evoke), I was routinely advised  to “offer it up.” What was meant by this suggestion was that my pain—taken in a broader context—could be transformed, by dint of my own attitude, from something negative into something beneficial. By “offering up” my ‘negative’ suffering I, myself, could convert it to some equivalent “positive energy” for someone else in need of it.

As a child, I interpreted this action as having an immediate effect. If I generously offered up my pain (and ceased complaining about it), someone else in the world for whom I dedicated my pain, might feel a lightening or compensating relief of their own pain; or a soul “in Purgatory” might ascend from that temporary confinement to a more complete participation in the joys of Paradise. It was the equivalent of the physical Law of the Conservation of Energy; only this had to do with the “Conservation of Painlessness”.

As an adult, these explanations involve an acquiescence to an entire theological construct. Such a construct may or may not be as compelling as it may have been in childhood. Or, for those not raised as I was, such a transformation of pain into benefit might not even seem to have any validity at all. But, as I think about it today, it would be foolhardy to dismiss the lessons given by wise mentors to children. Doing so risks dismissing, as childish nonsense, the underlying message my teachers were intending to convey. To consider the suffering of the world, when one confronts one’s own suffering, is an admonition that has enormous (and somewhat forgotten) value. One has only to read the Book of Job to realize there are more complex issues at stake than one’s personal suffering.

One of the least appealing aspects of my illness is its necessary focus on self-awareness. I am admonished to monitor my blood pressure several times a day. I am asked to take a glucose reading in the mornings and evenings. I have an assortment of pills to take at different times during the day. I must guard my nutritional intake. I must partake of sufficient exercise. I become, perforce, increasingly sensitive to routine things I formerly took for granted (such as touch-typing or merely walking).

It is well and good that I pay attention to such details. But one of the enemies of a balanced personality (and a serious impediment to a reciprocal community life) is self-absorption. Self-absorbtion is perilously proximate to self-awareness, especially the kind of self-awareness that arises from and is prompted by discomfort and pain.

So, as I struggle with a user interface resulting from thousands of lines of inanimate software code and an unnatural-feeling but remarkably-effective method of textual input; employed for the purpose of overcoming the (in the larger context, trivial) inconvenience of a neuropathic by-product of the treatment of my life-threatening illness, I am altogether grateful for my childhood upbringing that taught me to step outside my self-attentive discomforts to dedicate them for the lifting of pain, in general, from a pained world.

As a child, I had no doubt about the efficacy of my attitudinal reorientation; no doubt that my pain could be redirected to remediate pain elsewhere. As an adult, I can but hope and trust that something of the sort still really will happen. At the very least, its good for me to believe that it will.

 

Chet

 

Notes

[1]  http://www.greatlibraries.org

[2]  http://www.nuance.com/for-individuals/by-product/dragon-for-mac/dragon-dictate/index.htm

[3]  I couldn’t help myself… after the program was through transcribing my dictation, I hurriedly scanned and corrected the (remarkably few) typographic oddities that had been incorporated in the text. Homophones and homonyms seem to be sources of difficulty. I’ll do a bit more “training exercises” before attempting my next blog posting.

Decision-Making in the Absence of Certainty – Infusion 10/12

Dear Friends,

Summary

I learned last Wednesday that the 8th cycle of chemotherapy was typically the point at which the highest tolerable concentration of chemicals (er, medications) had been pumped into my body. Subsequent infusions were predicted to be accompanied by increasingly severe side effects. In fact, I’d experienced increasing discomfort resulting from the effects of the chemotherapy since the 8th cycle. I’d also suffered a rapid drop in weight, given the fact that solid foods were not only distasteful but were, in fact, disgusting. For that reason, alone, I could not stomach much beyond hi-protein packaged milkshakes and other liquids.

Monica had driven me to the Infusion Center last Wednesday, since she was “enjoying” her well-deserved week off for the Winter Holidays. Once there, we found ourselves in deep consultation with our specialists and nurses, and eventually concluded that we should terminate treatment on account of my condition, weight loss and distress.

I believe the decision to rank among the most difficult in my life. Following are some of its component parts.

Detail

Undeniably, I have a quirky way of dealing with decision-making. I believe my approach represents what other patients must confront (though I’ll readily admit they might not articulate it in the same way as I do). Following is the context of my thinking-process in reaching my decision. It is complex, as a decision concerning health-care should be.

The process is complicated because it necessarily (I believe) involves several “layers” or spectra. Each spectrum is a continuum along which can be found my current attitude or position. There’s not too much I can do to alter a given position… It is, as it is, at the time of my thinking about it. Each spectrum reminds me of a balance pole that tightrope walkers frequently use to maintain their balance on a tightrope. If the balance pole is out of balance, it makes more adventurous (and perilous) the traverse the tightrope walker makes from “point A” to “point B”.  If, however, the balance pole is well-balanced, it can act as a principal component in successfully executing the traverse.

Complicating decision-making in the absence of certainty is the fact that the tightrope walker (in this case, me) is compelled to handle multiple different balance poles simultaneously (unlike professional tightrope walkers who balance one at a time).

Among the discrete spectral balance poles I considered as part of my decision-making are the following. They can be expressed (with no particular hierarchy in mind) in tabular form:

Psychological
This is an unavoidable attitude towards my cancer that is part of the way I approach life. I tend to be stoic about anything painful. Most of the time, I try to ignore pain until it goes away. Yet, to my mind, my attitude is reasonably realistic. I don’t carry my stoicism to extremes. While my “stoicism” balance pole is likely to be a bit off-center (since I generally understate and underestimate conditions that are painful or even harmful to me), it is not so badly skewed as to threaten the carefullness of my decision-making.

Risk
An obviously important concern is whether or not a cessation of treatment will expose me to greater risk of future recurrance of my cancer (or of another type as has been reported in the literature, at least some cases).  Expert advisors are mixed in their opinion. One of the reasons I signed up for the Clinical Trial was my eagerness to participate in gathering data about divergent hypotheses. The problem, in the present instance, is that the data will not prove conclusive until many years into the future and therefore does not help me very much in making a decision today.

Given concern about my reactions after the 8th cycle, Monica and I were swayed by the fact that we had passed the 6th infusion (a point at which some doctors believe that the toxins have exerted their greatest effect on ridding my body of its existing cancerous cells). Though it appeared I could not endure the entire alternative protocol, I’d passed well beyond the mid-point of the extended protocol.  This appeared to us as a kind of middle point between justified riskiness and danger from overexposure to the toxins.

Collateral Damage
Neuropathy has been often described as possibly irreversable, even after treatment ceases.  After my 8th cycle of infusions, I experienced a decidedly sharp increase in neuropathic feelings in my fingers, toes, eyesight, taste and vocal cords. The effect on my physical extremities (particularly, feet) had even noticeably affected my balance. While none of the symptoms rose to the level of “life-endangering”, collectively, they were alarming; especially as I considered whether the neuropathy would persist long into the future. There appeared to exist no crystal ball from which I could glean an answer.

Quality of Life
Considering quality of life includes a present component as well as a future consideration, and is related to the above. How do I feel now? How might I feel if I continued infusing myself with caustic chemicals? My present condition has been debilitating in the sense that my ennui and lack of energy has turned me into a Rip Van Winkel-like couch potato. This is not a condition I enjoy. Nor is it one in which I can take pride. Akin to my problems maintaining a nutritional diet, it has been quite surprisingly difficult to overcome these maladies merely through will-power. This unexpected realization had an impact on my decision-making, to be sure.

Additionally, I counted the observations made by my family members. These suggested that my downturn was not imaginary. Their more objective—albeit to a degree, self-serving—observation identified a degraded version of their husband and father.  Their observations (which I must trust) had a significant impact on my own judgement about my reaction to the toxicisity of my treatment and the ultimate conclusion that I should cease treatment at this point, and continue on this road in a watchful manner, along with my oncologist and general practitioner.

Consultative
I am intensely aware (and have become moreso as this process has evolved) of my ignorance of the complex details and intricacies involved in cancer research, evaluation and treatment.  Countering such ignorance is what medical schools are for. I have not matriculated in one. That being a given, I consider myself to be reasonably well-read for a non-professional. I take my consultations with my oncologist as highly important and informative augmentations to my own research. Her advice is not to be overriden or ignored at a whim.

Nonetheless, I judge that there is a considerable ambivalance within the medical community, at large, about the current extended protocol of treatment. No one is able to tell me that ceasing treatment after ¾ of the maximum protocol of chemotherapeutic infusions is seriously risky. No one can assure me that holding out for 3 more (with the considerations listed above) is essential to success or empty of danger. No one can tell me that it is certain that 6 cycles, alone, will be sufficient to obliterate my cancer or insufficient to accomplish that aim.

Condition
It is part of my personality to conclude that my side effects are “not as bad” as they could be. But this personal inclination may minimize the fact that—for me—they ARE, in fact, bad. For a balanced view of this particular continuum, I must rely to a great extent on those who observe me, as from a distance. They generally feel that my condition is alarming enough that I should not ignore their desire that I (at least temporarily) cease treatment.

In consideration of all these individual spectra, I felt I had a reasonably balanced perspective. I felt I’d given an sufficiently fullsome consideration to the various influences on a decision that included no certainty about most of its aspects. One thing is obvious: this is not the end of the road, merely a stage stop along the way. The nurses predict that it will take 4-6 weeks for me to rid myself of the toxic effects of the treatment I’ve, thus far, received. I feel I’m slowly recovering strength… but its an amazingly slow process to me.  I’ll need to work on the virtue of patience in my life!

As I left the Infusion Clinic—and despite all the welcome and expert advice I’d been given— I found that all the balance poles in my hands had jammed the doorway, impeding my exit.  Can anyone help me?  Anyone?  No one?  Hello?

 

Chet

Collateral Damage – Infusion 10/12

Dear Friends,

Summary

Recently, I’ve been bothered by a series of dreams that include what I would call “gratuitous violence.”

I’ve had my share of the types of dreams one knows to expect from reading, even pop literature, regarding Freud’s suggestions about the significance of dreams. The ones about falling have not been in my recent repertoire. But I recall that a prominent feature of my falling dreams was their curious lack of detail. What seemed to be most important was getting to the point: the top of the staircase, or the narrow ledge atop a vertiginous skyscraper. Then, the awful, terrifying fall.

My favorite dreams are what I call my gliding dreams. These are typically preceded, in real life, by a ceremonial dinner, reception, or evening lecture at which I have had “one too many”, or “just one last nip.” After returning home and lying down on my bed (dressed for bed or not) I dreamily imagine myself atop a slight rise. The landscape before me is inexplicably British… (perhaps it is Scottish, the land of my birth, where my childhood memories were formed?) In my gliding dreams I need only take a few running steps, spread my arms, and I am aloft, gliding down the rise. My gliding is gravity-bound, though. I cannot overcome gravitational pull like a bird can. With every forward distance I glide, I descend closer to the ground. The lovely thing is that I find I can launch myself into another very pleasant glide by anticipating touching down, just in time to get my feet under me and kick off for another. As my dream goes on, I learn to perfect my timing, and proceed to learn how to change direction using my body weight and intentionality to swoop, corner, catch an updraft. From then on, I simply revel and marvel enjoyably at my newfound skill until REM takes over. The morning is not always as pleasant.

The dreams I’m having now are nothing like the recounted variety. They are astonishingly detailed.

For example, last night I dreamt that I had been called, mysteriously, to help a Stanford professor I had come to know long ago when I worked at Stanford University Press. I didn’t recognize this person in my dream, but I “knew” the rudiments of his biography. I also knew he was in some kind of trouble. I had been summoned when he was in some desperation; for what reason, I knew not. I’d driven down the Coast to the remote township where he lived with his wife. I noted that it was a long commute for him to the Stanford campus. His house was on a lovely tree-lined street. The trees were tall, large and overgrown. His house was one of three in a row on his block, three-storied and built in a kind of ’50’s interpretation of Tudor architecture. It was quite clear that some early developer had purchased these three lots and had built three imposing and very attractive residences at the same time. [Notice all the details, as compared with my falling dreams.]

My friends lived in the middle home. As I ascended the stairs to the front door of their home (having, for some odd reason, chosen to park my car two blocks back, adjacent to a sandy wind-swept vacant lot),  I could see through the glass doors what I already knew and anticipated. The front doors opened onto a spacious open area, an atrium that was topped, three stories above, with a fretted glass dome. My hosts had turned this space into a kind of informal food court. To earn some extra money in their retirement, the professor’s wife prepared a lunch, Mondays through Fridays. The typical partakers of the lunches were the groundskeepers of the neighborhood: immigrant gardeners and landscapers who kept the whole neighborhood attractive.

So far, so good.

But then my friends told me of a horrifying event that had occurred recently. I could envision it in gory detail in my dream.

A stereotypical vicious gang leader had come to the home two or three week’s earlier, desiring to rent the space “for a party” on a Saturday. My friends explained that they kept the weekends to themselves and did not serve lunches on Saturdays. But the thug was threateningly insistent. So they reluctantly agreed.

Maybe I was there; maybe I visualized it. On the fateful Saturday the place was filled with the normal clientele who had been invited for a free celebratory meal. In either case my dream was vivid and uncomfortably graphic. Just after beginning the meal, the thugs arrived. They encircled the seated guests.  What  followed was a systematic, slow, and detailed assault by the thugs against the innocent (whom the thugs wanted out of the township for some unclearly stated reason.) The thugs attacked and maimed the terrorized guests, one by one, in a melee I had to endure in startled and helpless tearful frustration until I awakened.

This, I take it, is where Monica and I find ourselves at this stage of my recovery.

Detail

I don’t like to admit it, but it’s true that after my latest cycle of chemotherapy there are times I’m a little “out of it.” So here’s a brief review of what I think I know. (I believe at least some of my nurse caregivers read this blog, If my memory has failed me, I trust I’ll be corrected this coming Wednesday, when I report for cycle 10 of 12.)

  1. The standard protocol for my treatment involves a cycle of 12 bi-weekly infusions followed by regularly-scheduled follow-up appointments with my oncologist, frequent blood analyses, annual colonoscopies and scheduled CT-scans to see whether there is any evidence of a relapse of my cancer.
  2. The difficulty, here, is that there’s no way to evaluate the efficacy of my treatment, except to watch and “keep a sharp eye” for evidence of recurrence. One of the blood tests is designed to identify cell “markers” that sometimes signify the presence of tumors. But the blood tests I took before my colonoscopy never evidenced the presence of such markers even though the presence of a tumor started this whole process. So this convenient test would probably not work in my case.
  3. Waiting to see if there is any recurrence years forward, doesn’t help us in our present situation.
  4. Meanwhile, a growing number of oncological specialists had hypothesized, from their clinical observations, that a reduced cycle of 6 bi-weekly infusions might be a sufficiently efficacious treatment against my type of cancer. If so, it would prove less costly, would stretch the chemo inventory to a greater number of patients, and would be less traumatic for those undergoing treatment. Naturally, I signed up for the Clinical Trial these specialists designed to gather data about whether their suspicions are correct. The data would be derived from patients like me, from all across the nation, some randomized for a cycle of 6 chemotherapeutic treatments (half the normal course … Scary; and half the standard course [into which I’ve been randomized], initially, seemingly more conservative and wise.)
  5. As an additional component of the clinical trial, I have also been prescribed an oral chemo pill, which I (along with the other volunteers) will take, daily, now, and several years into the future. This is also a blind test. Half of us, volunteers, are receiving the medication. The other half are receiving a placebo. (What is interesting to me is that the tablets are delivered directly from the Cancer Institute’s Pharmacy Center.  Even my oncologist doesn’t know whether I am receiving the drug or the placebo. This keeps her reactions to my condition objective. The procedure is designed to assures that her observation and evaluation are not cluttered by any bias she may have concerning the drug.)

From my description of the Clinical Trial (the results of which will not be able to be compiled and evaluated for a decade or more, when statistics of remission or recurrence of cancer among the study group can be added to the data on comparative treatments) one can see why some parts of the process against cancer is inescapably slow. Apart from research, some clinical evidence can only be carefully accumulated over a span of years; often a decade or more.

 On the treatment side, First-World approaches are only recently weaning themselves of the pervasive “more is better” attitude.

 “More is better”, “bigger is better” pervades our social psyche in the United States. Part of the reason is our litigious society, where doctors and hospitals must wisely seek to protect themselves against any accusation that they might have under-treated serious illnesses. But another cause might be the inexplicable testosterone-rich aggressive hostility that today seems to drive our response to any conflict of opinion. All around us we find reinforced the idea that “if you don’t agree, hunker down and fight!” This, I know, is a radical accusation. I will be pleased to be disabused of this notion. But in support of the accusation let me just cite a few things I learned from commercial television I watched over the past few weeks.

  1. “Shock and Awe” was our approach to unseating Saddam Hussein. “Shock and Awe” inflicted “collateral damage” among millions of terrified innocent Iraqi families, hundreds of thousands of whom have experienced not only family tragedies through the unjustified deaths of loved ones, but have suffered summary displacement from their homes and neighborhoods. The return of these families to normal life will easily take the next three or four generations. The social fabric—however fragile it may have been under tyrannical totalitarianism—was rent and discarded as “collateral damage” in the name of extending the hand of peace.
  2. Just this week, a fifth completely innocent child was murdered within 100-miles of where we live when a totally unsuspecting 5-year old was shot to death by a drive-by assailant. Perhaps the murderer was engaged in a joy ride with his date for the evening. There seems to be no other explanation.
  3. Over a million (!!) handguns and rifles have entered the public domain over the holidays. A proportion of those firearms will doubtless inflict collateral damage of their own on our society.
  4. We have maimed tens of thousands of our volunteer military forces who’ve been injured, both physically and mentally, in the aggressions we’ve pursued as a nation. We’ve trained youthful and impressionable men and women in violent techniques by which to impose our will. One witness to the sometime effects of this is the demented and highly armed man who was terrorizing and wantonly killing people in Mt Rainier National Park.  Collateral damage.

 The question before Monica and me is also about collateral damage.

If my treatment has been truly effective as of the 6th cycle, what collateral damage is taking place in my body? Logically the poisons, if they have obliterated their primary cancerous target, are now inflicting (perhaps irremediably?) damage to innocent cells? Evidence suggests that—while damage might indeed be taking place—the body is resilient enough to restore the damage after the treatment is over and the toxins are leached out of the body through metabolic and other unknown processes. But uncertainties abound.

I trust my caregiving advisors implicitly for three reasons, the predominant being “I have to.” The other two are far more significant. (1) I believe in and admire their education and dedication to master medical complexity. (2) I believe in the communal goodness of individuals whose constant and reliable instinct is to do good.

Still… How to know? When to know? How to decide?

 At this point in my treatment, Monica and I view, differently, our responsibility to care for our God-given body to the best of our last breath.  And, trusting her always-sound instincts, I don’t know if my point of view is superior to hers.

 I view my discomforts (I resist labeling my side effects as “suffering”) relatively lightly. Compared with the many people in this world who truly suffer (and with no visible end point in sight as I have), my discomforts are minimal.

Monica, observing my condition “close-up”, judges that the collateral effects of my chemo—especially in the light of the designer’s of the clinical trial, who believe a shorter (by half) treatment protocol may be sufficient—are more dangerous than continuing with to the last three cycles of treatment. She fears the “collateral damage.”

Have I explained the quandary clearly enough? It’s an emotional mix of trust, hesitation, judgement, advice, insufficient knowledge, hopefullness, and, of course, fear and uncertainty. In combination, this stew is disabling. We must get past it (and I’m sure we will.) One way, of course, is to turn the conundrum over to a higher power as a kind of sacrifice. But I’ve always been amused by the story of the man stranded on the roof of his house during a flood. After several days and nights in this precarious and dangerous position, he appealed to God. “God, why don’t you save me from this perilous situation?” God answered, somewhat testily, “I sent you a floating log. I sent you a sturdy floating branch. I even sent you an empty canoe that skirted near your home. But I made you a human. I won’t transport you to dry land. I expect you to show the initiative needed to take advantage of the natural ways by which you can be saved!”

Given our present experience, I can only deduce that every patient of a life-threatening illness undergoes a similar crisis. I sympathize completely; and regret that, so many times, I was simply unaware of such serious conundrums faced by friends and associates.

Little wonder that instead of enjoying my gliding dreams, I’m stuck watching the dream channel that hosts the gratuitous violence episodes.

 

Chet

Thoughts on neuropathy and touch – Infusion 9/12

Dear Friends,

Summary

Once again, I apologize for not being consistent in producing these occasional essays. I’ve just completed my 8th cycle of chemotherapy. As I write this, I’m in the Clinic undergoing my 9th cycle. This means there are only 3 cycles left!

Maybe I’d forgotten that my caregivers had been instructing me that during this process the chemo would gradually accumulate in my body, the poisons (er, medications) gaining in strength as that happened. As this took place, they warned me, my side effects would intensify. That is precisely what happened after cycle 8, two weeks ago. After this 8th infusion, all my previous symptoms heightened (neuropathy, nausea, drippy nose[1], fatigue [better described, in my case, as apathy or ennui], etc.) Despite my best “intellectual” intentions, my body and mind rejected anything I determined to accomplished that smacked of mental (to say nothing of physical exertion).  My mind’s compelling response was a puerile (I somewhat regrettably observe from this that childishness may never be completely erased, in even an adult male.) “Nah. Not now. Who cares? Watch some mind-numbing TV. Take a nap.  You can do all you want, tomorrow.” And so the week sped by without my posting a single blog update.

I’ve been jotting notes on selected Christmas cards Monica has addressed for us, confiding that–uncomfortable and annoying as the side effects may be–I recognize them to be predicted, within tolerable ranges, and by-products, merely, of what is healing me. Hence, I can easily put up with such incidental by-products while I slowly glean meaning and lessons from this process of illness, vulnerability, care-giving, care-receiving, healing… from the entire rich and related process.

I am similarly consoled to be able to turn over the monitoring of the intensity and the assessment of potential dangers of my side effects to my nurses and doctors, who have far more experience than I, in comparative patient reactions. So I find myself completely at ease with where I am, with respect to my annoying but not unmanageable discomforts and the timeline of treatment.

That said, I’m saddened (but gratefully aware of the reasons) to find that especially the women in my family (particularly Monica; Krysia; in her way, Anastasia; and my sister, Wandzia), find distressing, my apparent weakness and discomfort. They would rather not have me go through this unavoidable phase. It’s easier, by far, for me to come to terms with what I am experiencing, than it is for them to accept what they observe. I’d react in exactly the same way if our roles were reversed. Different experiences of the same illness. Evidence of the often under-recognized wider impact of illness: wider effects than can be observed in one patient, alone.

Detail

I’ve been thinking about nerves (i.e. neuropathy).

Pensée, the First

Think about one single nerve, whose one end terminates in the tip of your index finger. Perhaps this nerve is dedicated to recognizing temperature. It possesses some sort of knowledge about an acceptable temperature range for human beings. Or, more likely, any particular nerve is far “dumber.” It simply passes on observed information having to do with temperature. Elsewhere, that information might be interpreted to be within or outside an acceptable range. This particular nerve is essential to the time-honored tale of the toddler learning not to touch the burning oven or fireplace. Perhaps there is nowhere (even in our mind) that some pre-determined “temperate range” exists, prior to the experience of pain that can be registered by this nerve. This nerve, while specialized to deal with temperature, might merely (and in common with other nerves) register comfort or discomfort. Over the course of time, some operation of the mind might accumulate the massive amount of data continuously transmitted by this single nerve about the status of its specialization. Then the mind might begin to filter away those communications that are benign and ignorable. In this way, the mind might eliminate large amounts of incoming information that doesn’t need to be processed because experience shows that it can be ignored. At the same time the procedure heightens responsiveness to messages from the nerve that fall outside the ignorable range. “Ouch. This stovetop hurts me!”

My goal, here, is not to try to define “message”, “mind”, “information”, “knowledge”, or any of the other words I’ve conveniently (but not in any precise way) used, above. My goal is even less to attempt to describe the mechanism by which nerves “communicate”, “learn”, “process” or (importantly) “forget” what they register. It is enough, in this crude simplistic explanation, that I recognize, dimly, how many details exist, and how careful must be the intellectual and scientific work to describe and understand this process, even down to its chemical, molecular and electrical/energetic functional mechanisms. But all these are undeniably exciting, in themselves, as fields of attention.

Instead, my goal is to isolate this particular,—minute—nerve, on my index finger, to recognize two following facts that can be deduced (and verified by scientific investigation and experimentation).

(1) There must by multiple and countless “siblings” or “independent clones” of this single nerve. I know this because—even confined to my index finger—discovering that the stovetop is too hot for me to touch can be learned at various spots along my finger, and even at different points on the tip of my finger. One fixed nerve-ending couldn’t suffice. I’d have to be endowed with duplicate nerve endings at the top and sides of my fingertip, and more—closely-spaced—along the length and circumference and plane of my finger’s skin surface. Mind-boggling.

(2) If the nerve I’ve been describing is specialized for temperature, there must exist similar nerves, of a similar kind, specialized for other sensations (roughness/smoothness, pressure [very light to very strong…probably differentiated], movement/stasis, weight, thickness [in conjunction with other nerves], texture, density [solid or liquid], viscosity, stickiness…). The list is seemingly endless.

Its, perhaps, easy to see where I’m heading. I want to be aware of the incredible density of sensory apparatus nature has concentrated on my index finger. Aware of it, I can extrapolate that density to my remaining fingers; then to my hands; and thence to the rest of my body. I have an impression (and don’t wish to digress by trying to verify it) that the nerves I’m thinking about are not evenly distributed throughout my skin. My ankles—though evidently sensitive (in addition to appearing attractively svelte, these days)—seem to me not to have a comparable concentration of the same nerves as I’ve become aware of in my fingers.

Pensée, the Second

How interesting that…

  • I experience a distinct feeling of calming when my nurse puts her hand on my chest in order to stabilize it while she inserts a needle into my port.
  • in the West, we customary shake hands in greeting, instinctively affirming the potential, or reaffirming an existing relationship.
  • experimental studies have confirmed that the absense of touch in young mammals and human children cause substantial degradation of later confidence, happiness, and feelings of security.
  • liturgical ceremonies from the consecration of priests and bishops, to ritual confirmations of kings and emperors have historically, down to the present, included what is called “the laying on of hands.”
  • during the imposition of the Sacrament of the Sick (which I’ve been priviledged to receive), there is a similar laying on of hands. It conveys a distinct calm and brings peace.
  • holding hands is sought after by young lovers. When I hold hands with Monica it is a wonderfully brightening, loving, and consoling (not to mention exciting) experience.
  • we instinctively stroke the faces and bodies of those who are in pain.
  • we humans tend to want to cuddle… bringing the sensory apparatus of one being in close proximity with that of another.
  • we can share this intimacy, or this yearning to communicate, with other sentient human beings; not only human, but other species who co-exist with us on this earth.

I believe there is a good deal to wonder at, in the awareness of the density of sensory apparatus that is part of our corporeal selves. Clearly, many of the apparati exist to make us aware of danger and protect us against a potentially hostile external world. But many more seem to exist to pass messages among us that are even more communicative (think broadband, for you techies) than our uttered language.

With these thoughts, then, it seems appropriate to wish that during the forthcomingh holiday season, you be touched by and touch with great awareness, the people who surround you, nurture you, and live their lives with you. May you, too, be warmed by the Spirit who fills these festive days with meaning.

Chet

 

Notes

[1] Verification needed… I can’t tell if its a “medical urban myth” or has any basis in reality. I’ve not (yet) lost my hair, but my eyes (and especially my nose) seems to drip constantly and voluminously. I asked someone what causes this to happen, especially by my annoyingly constantly-dripping nose. They answered that—despite the fact I’d not lost the hair on my head or chin—I’d lost the hairs in my nose. Among their jobs was to keep my nose from running.  I find this—for some quirky reason—immensely amusing. But I’m also skeptical. Any feedback would be welcome at grycz@well.com . Merry Christmas!

The meaning of illness

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

Technologies that, as a patient, I’ve found useful

Summary

In previous postings I’ve expressed gratefulness for technological advances. I was especially emphasizing the existence of large data sets of medical research. I enthused about combining them with clinical experience gathered from numberless patients. Several respondents have written to correct the impression I may have left from my idealistic vision. Some warned me that despite the fact that medical databases are intended to increase collective medical knowledge about cancers and other illnesses, my particular experience might be excluded from all of them unless I’d given express written permission beforehand. An epidemiologist cautioned me: “You must realize that, on the topic of “information-sharing”, the only voices the American Medical Association hears, are those from privacy advocates. As a result, a lot of patient data is illegal to compile and include in databases.” Meanwhile, anonymized data is considered to be suspect by scholars. They want guarantees that will allow then to validate all factual information. They demand a reliable provenance trail that continues back to original sources. But if such a trail exists any sufficiently determined individual would be able to find and follow it. Another respondent told me about a summer camp for children with cancer. The camp founders provide a parallel experience for siblings and another for parents. This innovative and thoughtful idea nearly didn’t get off the ground. There was no legal way for the founders to canvas and identify cancer patients in area hospitals or under local physician care. This made it difficult for the camp administrators to issue a general invitation to their target users to participate in the camp. Even though the camp was free and was intended to augment and enhance the medical care that was being administered to the patients, privacy issues forbade access even to the existence of cancer patients. Word-of-mouth has eventually been enough to pass the word around about the camp. It has proven enormously beneficial to all concerned.

There exist a few more steps that must be taken by software engineers, policy-makers, and the general public before the vision of integrated and interactive databases containing both research and clinical experience comes to full fruition. In the interim, the technologies that allow the creation of massive databases, and those that provide access to the data from almost anywhere in the world, are continually improving. New ideas are emerging (eg.: cloud storage, customized security, policies for protecting privacy, authentication of entries, controls for participating users). All these are providing great value. Today’s experiments answer practical concerns for the present and the future. Through incremental improvements, software is iteratively refined for more effective implementation. So I continue to be optimistic that technologies of a not-too-distant “tomorrow” will be able to leverage research and all clinical experience. That would accelerate the discovery of new techniques with which to deal with human illnesses.

Despite my optimism about technology, I find it depressing that, in the United States, individual privacy issues trump and constrain the implementation of what could have wide social benefit. Upon fleeting consideration, I can comprehend some of the components of this paradoxical conundrum. But I am not pleased by the results. Its a topic for future consideration… perhaps by all of us.

In the following reflection I want to turn away from broad macro-solution advances. Instead, I want to draw attention to little, generally-available technologies that are a boon to me in my day-to-day experience.

Detail

From earlier posts you will have learned of some of my fears. My fears have surfaced as I progress through this experience of cancer in my life. Here’s another to add to my list: I am very afraid of dementia. I am highly empathetic to people who are simply confused by the world around them or who are afflicted with medical disabilities that manifest themselves in such a disabling manner. I admit to experiencing an almost visceral pain when I observe dementia in members of my family or close friends. My own experience of confusion is minimal, at worst. But even this minimal experience is enough to increase my sensitivity to (read, “horror of”) dementia.

My own inconsequential confusion results from the unanticipated assault cancer has made on my regularly well-organized (if only by habit) life. Suddenly, I was confronted by a series of entirely new priorities. Suddenly, I was faced with a good deal of brand new information. Suddenly, I experienced a radical overhaul of my personal daily and weekly schedule. Suddenly, my time and freedoms were constrained.

I listen as attentively as possible to the advice of nurses and doctors who instruct me about what signs I should watch; what medications I should take; what activities I should avoid and others I should maintain and increase. They ask me to take notice of my blood pressure throughout the day, to report the data to my primary care giver, to record my blood sugar levels periodically, and to adjust various medications on the basis of the results of my bi-weekly blood tests. It all sounds perfectly reasonable and logical. However, I’m startled to find I can’t remember what it was that, just days previously, I understood and assented to. I have trouble attending to entirely simple (but suddenly required) tasks such as regularly recording my blood pressure. I believe all cancer patients suffer from this attack on their normal routines.

The cause of my discomfiture (which reminded me of dementia even though it is far, far from it) is that the changes we cancer patients experience are so abruptly and suddenly imposed on us. The instructions I receive are ones I’d not anticipated. I didn’t prepare ways of smoothly incorporating new tasks into my daily activities. From an evolutionary perspective, we humans may benefit from our considerable adaptability of behavior. But it appears that we also depend, to a great extent, on the comfort of routine.

To use but one among several possible examples, in my “former life” I had no need to develop a routine for monitoring my blood pressure. When it was suddenly important to do, I employed techniques I used normally, i.e., writing down my readings on scratch paper or on “to do” lists, so I’d be reminded to e-mail my readings to my primary doctor. However, not having been a part of my “normal” routine, I discovered that the notes on which I wrote down my readings got lost; they didn’t have a natural “place” on my desk. They ended up not being transferred to a central consistent file of blood pressure readings. I found I’d neglected to date the notes. If I dated them, I forgot to jot down the time a reading was taken. Stickies were of no use; there was no place to stick them to. I tried logging my blood pressures in a journal, but found it to be cumbersome. The journal book seemed never to be at hand when I had a blood pressure cuff on my arm. When it was time to send a record of my readings on to my doctor, I had to transfer the handwritten records onto e-mails. Then I discovered the obvious: that typing lots of numbers was highly susceptible to typos and errors. The whole simple matter became a nuisance. And the nuisance manifest itself when I least needed to be bothered by frustration.

But I have a smart phone. Ok… its an iPhone. (I aspired to being inclusive in this description and I believe most smart phones have similar applications. Perhaps not.) [1]

I know you’ll recognize the paradox with my owning an iPhone. I realize (and I know that most of my readers know)—that I am not an intensive telephone user. In fact, it can legitimately be claimed that neither am I a casual phone user. Nonetheless, I often carry my iPhone. It comes fitted out with useful apps. An app is differentiated from a full-featured application program. Precisely where lies the border between the two, I am uncertain. Both are written in programming code, and one is small enough to reside comfortably on the limited, but nevertheless capacious, space in the iPhone. An app also runs under the iPhone’s similarly compact operating system, whereas an application might require a more robust operating system.)

My iPhone is handily compact, fitting into my shirt pocket. I now record my blood pressure readings on my iPhone.  The small app I employ for my purpose is called iBP.[2]  When I place a blood pressure cuff on my arm, I simultaneously launch the iBP app on my iPhone with my free hand. When the reading is available on the cuff display, I use finger gestures to “roll some dials” on the iPhone display. My goal is to set the dials to correspond to the proper diastolic and systolic readings I’m reading from my cuff. I twirl a third dial to record my pulse rate. The iPhone “knows” the time and date, so I needn’t worry about those settings. With a click, the various pieces of data are saved and stored in the app’s memory. But as the huckster on TV infomercials continually repeats: “But wait! There’s more!”

Screen images taken from the iBP web site.

• What I particularly like (since I am, largely, “a visual learner”) is that I can swipe my fingers across the screen to reveal a tabular rendering of my blood pressure readings (today’s, this week’s, this month’s, etc.).  But wait! There’s more!
• If I swipe my fingers across the screen of the iPhone again, it reveals either a bar chart or a line chart representing my readings. I favor the line chart because it not only displays dated color-coded dots for each of the readings I’ve taken (green for “within range”, red for “outside of range”, yellow for “just right”) but it also calculates a trend line. This lets me see the direction in which a set of readings is going, over time, flattening the spikes and valleys of my highly variable readings. But wait! There’s more!
• The opening screen of the humble but impressive iBP app displays an “at-a-glance” summary of my last 10 readings. In shorthand, it calculates the number of readings I’ve taken over various lengths of time; it distinguishes those that were taken during the mornings from those taken during the evenings; it calculates averages. But wait! There’s more!
• I can capture a photo of any one of these images with a mere tap on a button shaped like a camera. This stores the images for my future use. But wait! There’s more!
• I can select some durations, some categories of information, and some file formats (all of which settings, my iPhone conveniently remembers from use to use).  Having done so, I can send these via e-mail to my primary care giver, to myself, or to anyone else I choose.

Such a tool is, obviously, extremely beneficial. It is one very complicated and very compact computer program that has been designed by one or a group of very detail-conscious engineers. It is also specifically designed to be easy and intuitive to use. It resides on a familiar ever-at-hand device: my iPhone.  iBP is only one example of a technology, at the consumer- or user-level, that has simplified my life. It has eliminated an unnecessary confusion and has provided several benefits.

From a technical perspective, the app is exemplary because it captures my blood pressure readings once. I don’t have to write them down and then transcribe them onto my computer. I don’t have to enter them into different calculators to generate trend lines, averages, or graphs. I don’t have to put them into a table to find the peaks and valleys of the readings. The app provides all these easy manipulations because those tasks are simple tasks to encode in programming code. My blood pressure data is thereby usefully augmented through simple mathematical manipulation (finding an average, distinguishing between morning and evening readings, calculating a trend, etc.). The app provides useful visual displays for the “numerically challenged” (like me) using color, graphs, and charts to display the numeric data. The iPhone provides convenient safe storage (with backup and sync possibilities). Collecting my blood pressure readings—facilitated by the use of iBP on my iPhone (or iPad)—is easily integrated into work habits to which I’ve previously become habituated. Adding a new function (recording my blood pressure) is not quite as disconcerting as it was when I had begun to log my readings on scraps of paper or tried logging the readings onto a journal.

I have a separate app on my iPhone for capturing and logging glucose levels. I have another for tracking nutritional values of things I eat. I have a third to log my exercise and encourage me, every once in a while, with motivational phrases (I can do without them, but they may be helpful to others). Other cancer patients may find different apps that satisfy other particular needs. There are many medical apps on the iTunes store; and they are generally priced affordably. The freedom to capture data easily and to manipulate it and view it easily, makes it more likely that I will engage myself with what the data actually means. I can be attentive to dangerous trends. Before I possessed such an easy method, I was caught up with the process of collecting and recording my data. That took my attention off the prime target: the readings themselves and what they showed that was pertinent to my health and recovery.

"Beam me up, Scotty."

Now… if only I could locate an app that would seamlessly “beam me up” to the track or nearby nature trail! Such an app could compel me to do my much-needed daily exercise regimen.  THAT would be technology worth a king’s ransom! It would surely delight Monica and my doctors. Me, too…  …maybe.

Chet

 

Notes

[1] Most of you who are reading this blog know that I’ve been an Apple enthusiast since the very first Apple II I managed to obtain while working at the University of California Press. My initial requisition for it as a “personal computer” was denied by our CFO. The next day, I resubmitted the request with all details exactly as I’d written them the day before, but titled the Apple II as “replacement electronic typewriter”.  My requisition was promptly approved. I’ve never looked back.

[2] iBP is published by Leading Edge Apps, LLP, and is available on the iTunes online store.

Chemo Infusion 4/12—Neuropathy

Summary

Before cancer, I can’t recall ever having used the word neuropathy in casual conversation. Even now, any word with the root neuro makes me nervous. Coupled with the suffix pathos its even more pathetic; a word to be avoided. Yet it is unavoidable. Neuropathy is a potential side-effect of chemotherapy because my nerves are among the rapidly growing benign cells that may be inadvertently affected by the poisons of the chemicals I’m taking. It appears, in addition, that should my nerves suffer degradation through serious neuropathy, the effects might not be reversible. Neuropathy, since it affects the extremities (fingers and toes, for example, [although more, as will be seen]) is a decidedly frightening thing to consider. Debilitating effects are more disconcerting to me, even than death, itself. Death, after all, is eventually inevitable. A disability that would make it difficult or impossible to walk, or type on a keyboard, is, I believe, something with which I’d have a very difficult time reconciling. It would take a good deal of psychological and spiritual effort.

Since my diagnosis of cancer, friends and associates have comforted me with promises of prayers for my health. I welcome those. But what I find myself praying for is that I may come to terms and accept whatever it is that is to be. Acceptance dominates my own prayers because it is an attitude somewhat within my control. The effectiveness, method and sophistication of my treatment, (and, particularly, whether or not it may result in a remission of my cancer) is not.

Detail

Shakespeare conferred these thoughts on Hamlet, when he penned Hamlet’s famous soliloquy in 1602:

What a piece of work is a man, how noble in reason, how
infinite in faculties, in form and moving how express and
admirable, in action how like an angel, in apprehension how like
a god! the beauty of the world, the paragon of animals…

Shakespeare didn’t know the half of it.

One of the more forbidding (to me) side-effects of chemotherapy is peripheral neuropathy. The term identifies the nerves in one’s extremities, and suggests that the toxicity of the chemotherapies may do damage to the peripheral nerves. The confounding thing is that while there are suggestions about how to minimize or neutralize neuropathy, there’s no assurance that applying such treatments wouldn’t counter the more important aim of reducing my cancerous tumors or obviating their diminution. It doesn’t seem, to anyone, that it is worth the risk of treating neuropathy if the treatment is, at the same time, going to allow the cancer free rein.

Reading about neuropathic studies is—as I have suggested in earlier blogs—not something that I can advise for the non-medically trained (including myself). Nonetheless, the careful and precise language of medical journal articles does convey a sense of the serious investigations of medical science. They reveal the attentiveness of researchers and the careful pondering of observations. Even if I don’t very well comprehend the details of such articles, I can understand their grammar and the logical construction of deductions. The good ones convey to me a sense of confidence in the scientific medical process, even though I wish that the process might be further along: that the hypotheses had already been turned into proven facts. Following are a couple of paragraphs from one article I consulted. It reveals the precision of medical language to which I’m responding. It also identifies the complexity of identifying and defining what may be clinically observed (or not) about neuropathy:

Taken as a group, peripheral neuropathies are the most common remote effect of systemic cancer on the nervous system. Paraneoplastic neuropathies may be classified by their associated neoplasms, or by their clinical presentation. Either classification scheme becomes complicated, in that a given clinical syndrome (eg, sensory neuropathy) occurs in association with a number of different neoplasms. Conversely, a given tumor type can be associated with different neuropathy syndromes. As with other neurologic paraneoplastic disorders, neuropathy is often the presenting feature of the patient’s neoplasm. It is therefore the neurologist’s task to identify a paraneoplastic neuropathy as such. This task is made more difficult by the rarity of paraneoplastic conditions, and by the fact that none of the paraneoplastic neuropathies have a pathognomonic clinical presentation. For at least some paraneoplastic neuropathies there are serologic markers which may be used in diagnosis.

For patients without a known neoplasm who present with a peripheral neuropathy, the likelihood of a paraneoplastic etiology is difficult to quantitate and depends on the particular neuropathy syndrome. For example, severe rapidly progressive sensory neuronopathy is much more likely to be paraneoplastic than a mild, distal, slowly progressive axonal polyneuropathy [3-5]. 

Lacking systematic exposure to medical training, I’m not equipped to do much with this information (save, as I’ve shared with countless students I’ve been privileged to engage, “New, incoming information seems to set up little velcro-like tags in our brains. Once established, additional related information that is received has a place to attach itself. Knowledge seems to grow in one’s brain through such an iterative process as commonalities are reinforced or contradictions are identified.”) With respect to my nervous system, I can take a more generalist approach (for which I have, already, a few velcro hooks in my brain.)

We possess trillions (!) of nerves (more properly, neurons) in our body.  Some can be metres+ in length. We humans could be defined, with at least some legitimacy, as a largish packet of sensory apparatus containing a life-propelling force that maintains the apparatus. Sensory (more properly, afferent) neurons convey messages to the brain and spinal cord from the nerve endings. Motor (or, efferentneurons convey commands away from the central nervous system to the nerves themselves. Autonomic neurons deal with involuntary controls. Here’s how the University of Chicago Center for Peripheral Neuropathy defines the latter. What is evident is that the definition consists of sometimes completely contradictory effects (which seems to me to be a pretty loose definition, indeed; but conveys part of the problems associated with clinical observations and individually different reactions to stimuli:

  • Autonomic nerves control involuntary or semi-voluntary functions, such as heart rate, blood pressure, digestion, and sweating. When the autonomic nerves are damaged, a person’s heart may beat faster or slower. They may get dizzy when standing up, sweat excessively, or have difficulty sweating at all. In addition, autonomic nerve damage may result in difficulty swallowing, nausea, vomiting, diarrhea or constipation, problems with urination, abnormal pupil size, and sexual dysfunction.

While there are three types of neurons, there are various sub-classes that have been identified with a consistent labeling system. (Doesn’t this remind you of sorting screws?):

  • A(alpha), largest and fastest velocity, acts as motor and sensory fibers.
  • A(beta), next largest, acts as motor and sensor
  • A (beta), next largest, acts as motor and sensor
                 A(gama), next largest, acts as motor only.
  • A(delta), next largest, acts as sensory only.
  • B, smaller than A fibers, only acts a motor.
  • C, smallest, acts as motor and sensory.

Furthermore… (I was intending to open this sentence with the word “Finally” but replaced it with “Furthermore”.  It is very clear that we are continually discovering details and specializations that are not at all “final,” nor have yet been systematized or integrated into our knowledge of the “piece of work” of which we are constituted.) So, furthermore, various classes of neuron react to different stimuli (very light touch, more insistent touch, differential pressures, temperature, pain, various types of taste, optical sensory input, light rays of various intensities, sound waves, vibrations, etc.) If I but concentrate and let myself contemplate the distinctions and the capacity of my neurons to convey sensations in such a finely discriminated way, I cannot help but be enthralled. Nor can I be anything but appalled by the thought that any single one of these admirably fine sensational apparati should fail to inform my central nervous system about its subject. Not to feel pain would be dangerous. Not to taste the difference between savory or sweet could be disgusting. Not to feel pressure could inhibit locomotion. And any of the preliminary signs of disorder (ones that cause tingling, phantom pain, oddly burning sensations [all of which are known and possible]) would be uncomfortable and frightening.

Anecdotally, my podiatrist shared with me an odd fact. While the differing classes of nerves each have their specialization, when one specialized class of nerves suffers degradation, all the others—as if in sympathy—suffer disruption as well. She tells me that researchers don’t know why this is so. They don’t understand why the nerves would have evolved with such built-in sympathetic responses.

What I know is that Hamlet was understating his awareness of the admirability of the human body by miles. I also know that when I last went shopping for some low-cal yoghurts in the cooling section of the grocery store, I found that I could barely handle the merely cool yoghurt containers just the short distance to get them from the cooler to my shopping cart. My fingers tingled and burned and hurt so much I had to ask for assistance. It is decidedly difficult not to overreact to such an experience. I know something is going on. My nerves are clearly reacting to the chemotherapy with which I’m infusing myself. I don’t yet think the reactions of my fingers is seriously neuropathic, but my fingers bear evidence that some degradation, at some level, is taking place. I need to pay attention to them as objectively and calmly as I can in order to report the experience accurately to my care-givers. At the same time, what I’m feeling is my body and my nerves. This makes it difficult to be dispassionately objective about it. In truth, I wouldn’t want to be dispassionately objective about these goings on with my body.

Hamlet concludes his reverie on the wonder of man with a judgement against himself for lacking nerve and possessing a destructive attitude:

and yet,
to me, what is this quintessence of dust? Man delights not me—

When I consider the amazingly sophisticated interaction of chemistry, biological cells, and slight electrical signals… and the response of these to the variety of tactile and sensory  stimuli, I feel exactly the opposite of Hamlet. I could praise and admire this body I inhabit with pages of pages of marvelous functional details about which I know, and others I expect to be discovered. Indeed, medical researchers are doing just that in the millions upon millions of pages of observations, clinical trials, treatment results, chemical and molecular analyses. It is enough to make one awestruck.

To be in awe of this Creation is a fine experience to possess and appreciate. I am grateful for it and wish such awareness on everyone I know.

Chet

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