Pettiness

Summary

Since April 2013, Monica and I knew to expect a recurrence of my cancer. It was a matter of time. We were happy to ignore the eventuality and live our lives in a normal unencumbered way. But the reality was in the back of our minds.

Last week’s recommendation from our oncologist did not come as a complete surprise. Yet, it was, nonetheless, disappointing and disturbing. Monica and I both realized that it would mean a resumption of regular and frequent visits to the hospital, the unpleasant but unavoidable side-effects of the chemotherapeutic drugs, and the diminished energy, reduced mental acuity and physical discomfort that undergoing chemo meant for me. Added to these are the resumed basket of contradictory emotions that we both experience: anxiety, empathy, hopefulness, fear, determination, etc.

Our predominant reaction of the doctor’s evaluation was that of gratitude…  sincere gratitude that there existed a reliable and proven “second round” of chemo to which we could avail ourselves. How fortunate that we live when protocols have been developed over time, adjusted by the experience of previous patients, and made available to me as a known and well-understood treatment. Instead of feeling helpless in the face of our development we have hope that the treatment will be successful in “beating-back” and stemming the unhindered growth of my cancer tumors.

Undeniably, gratitude was what was foremost in my mind as the doctor shared with us her evaluation and reasoning. I was surprised, therefore, in experiencing my first chemo treatment of “Session 2” that I found myself annoyed with petty inconveniences. Why is it that pettiness so often trumps rationality? Why was it so easy to become preoccupied by incidentals and apparently put aside the far more important benefits I would receive?

Detail

This is my schedule:

On a Sunday before my Infusion, I must report to the hospital for lab tests. We already have established a baseline of various components of my body’s chemistry, blood components and counts, cholesterol levels, triglycerides, magnesium and potassium balances, urinalysis, etc.  I only have, to be frank, an embarrassingly vague understanding of how all these components work together, what they indicate, and what my medical caregivers learn from reading the lab reports. But study them, they do. Having established a baseline, they can learn, each time I report for a new infusion, how I am responding to the chemo.

The Monday following the lab tests, I report, early in the morning, to the Infusion Center. I receive a dose of steroids and medications in pill form to counteract the side-effects of the chemo I’m about to receive. Next, the nurse accesses my surgically-implanted port* and connects sterile tubing to it, flushing all the tubes and connections in the process, to make sure there are no obstructions or problems. My port makes it unnecessary for a nurse to implant an intravenous [IV] needle at the top of my hand (a process I distinctly do NOT like). After the tubing is in place, it is carefully secured with a large transparent sterile covering, for it will have to stay sterile and in position for the next 48 hours or more.

Meanwhile, the hospital pharmacy will have delivered my chemotherapeutic drugs. These come double-bagged in the unthinkable event of an accidental puncture. My nurse dresses herself in what I’ll call a “half-hazmat” suit. It differs from a “full hazmat suit” in that there is  no plastic visor covering her face, and lighter weight material is used for the gown. Also, she does not have to wear sterile booties. Apart from those three details, she and her clothing are covered protectively, her hands are protected by sterile gloves and she wears a mask across her nose and mouth.

In a former posting from my first experience with chemotherapy, I expressed shock at the signs that hang in all the bathrooms of the Infusion Clinic. They read: CHEMOTHERAPY PATIENTS – FLUSH TWICE!  This time, it was all these handling precautions that reminded me of the dangerous toxicity of the drugs I was about to receive directly into my heart and thence, pumped throughout my body.

Once everything is ready, the oncology nurse hangs the first of several bags of chemicals on the IV pole and connects them to the tubes going to my implanted port. The “drip” infusion begins. The infusion, itself, is painless. I am being infused with some associated “assistive” chemicals and three chemotherapeutic drugs, one of which (Fluorouracil) I received in my first round of chemo, and two of which (Irinotecan and Avastin) are new to me. The infusion process takes roughly 4 hours, during which I sit in a comfortable chair and read or listen to music.

During this first round, I had a strong reaction to the steroids I received in pill form at the beginning of the morning. Within an hour, I began perspiring furiously, dampening my shorts and my shirt and became decidedly alarmed, given that I’d witnessed the precautions taken in handling the drugs that were coursing into me. My nurse reassured me that I was simply reacting to the steroids. It was “nothing to worry about”. I, however, worried that the moisture would wick up through my khaki trousers making me look as if I was incontinent. I didn’t like the sweaty overheated feeling. I was annoyed that I “was required” to take the steroid pills.

Just before noon, I’d absorbed various bags of the dangerous chemicals. The next step was to replace the connection to the IV pole with a portable pump filled with a supply of the chemo drugs that I would take home with me. The pump is an ingenious device about the size of a fat baby-bottle. It contains an expanded latex or rubber “balloon” filled with chemicals. The pressure of the expanded balloon is enough to continually squeeze the chemicals, within, through the tubes. I would have the pump attached to me for the rest of the afternoon, overnight to Tuesday, all day Tuesday, and overnight to Wednesday. Sometime Wednesday morning, the pump would be empty. I could then go to the hospital to have it removed under sterile conditions.

After that, I’ll have two weeks to recuperate. Then the cycle will repeat: twice monthly for a period of 6 months (i.e. lasting to March/April 2017). Predictably, the chemo will accumulate in my body and predictably, the side-effects will testify to the disruption being caused my tumors. Unfortunately, while the process of beating-back my tumors will be taking place, numerous entirely guiltless but rapidly-growing cells of my body, eg. hair follicles, mouth surfaces, nerve connections, etc. will also succumb to the effects of the chemo. This unintended “collateral damage” is the cause of neuropathy, hair loss, mouth sores, nausea and gastro-intestinal turmoil.

But—cumulative side effects aside—this regimen is certainly “convenient”, especially given the alternatives. I am under the supervision of qualified medical personnel each time I begin an infusion. Proper drugs are available to me. I sit in comfort while each infusion begins, long enough to make sure there are no unforeseen reactions or complications. Having a portable pump gives me a great deal of freedom of movement and flexibility. As I noted, the chemo I’m receiving has been tested, monitored and adjusted for maximum efficacy. And the “assistive” drugs are designed to diminish the worst of the side-effects. There’s everything in this scenario to appreciate and for which to be thankful. I even travel to the Infusion Center, conveniently, by public transportation. It is, perhaps, unwise to drive when under the influence of chemotherapy, especially when the side-effects begin to assert themselves.

I came home Monday afternoon from the Infusion Center, somewhat emotionally tired by the experience and lay down for a nap. It turned out to be impossible because of the effect of the steroids. I was alert all night and dozed off for a maximum of 2 hours, still strangely and unnaturally alert in the morning. Steroids are powerful. Meanwhile, the long night was disconcertingly uncomfortable. I worried that I’d get entangled in the tubes that led from the pump to my port. I worried that I’d turn over and break open the sterile bandage containing the needle that provided direct access to my port. I worried I’d forget about the bottle when I rolled over.  I worried that the pump wouldn’t work properly. I worried myself unnecessarily, but it continued the next day.

In the morning, I was annoyed I couldn’t shower. Then I worried I’d crimped the tubing by tightening the belt holding up my pants. I didn’t like the weight of the pump against the strap around my neck that secured it to my body. I didn’t like the way the pump felt against my chest, so I moved it. I didn’t like how it felt under my arm, so I tried another position.

MAINLY, however, I disliked the fact that I had let myself become preoccupied by petty insignificant inconveniences when I should have been celebrating the opposite: great convenience,  joy in hopefulness, access to caregivers and effective chemicals; that I was under the care of concerned professionals and received their careful ministrations. I am so very blessed.

I don’t intend to exaggerate my preoccupation with pettiness. It’s only that there is such a great disparity between the benefits I am receiving and the petty insignificant nuisances I need to experience, that I am surprised I’d give the nuisances any “standing” to stimulate complaint. Yet, it seems often to be the case that the immediate annoyances of life, however petty, have a surprising power to assert themselves more strongly than rational comprehension and judgement can do.

I suppose this is because the annoyances are closely linked to emotions. The things that annoyed me provoked the side of the brain that works independently of rational and logical thought. They demanded urgent attention, not because there was a rational immediacy to them, but because all the things that bothered me were legitimate dangers. If I tangled the tubes at night, I could possibly dislodge the sterile bandages. If I accidentally crimped the tube, it could interrupt the flow of the drugs. If I didn’t pay attention to where, in physical space, my pump bottle was hanging, I could easily jar or crash into it by accident. So both sides of my brain were clearly working in the face of a dangerous situation.


A friend—on finding out I was undergoing a second round of chemo—asked me, solicitously and hypothetically, what on earth I could have done to deserve my situation. I’ve never thought of it that way. Rather, I’m always conscious that I’ve done nothing, in particular, to DESERVE the wonderful life I’ve been given. Life is a scrabble. And my scrabble has been slight compared to some. No wise person—whether spiritual or secular—has ever suggested that life should be a “walk in the park.” In point of fact, it seems that overcoming challenges and obstacles of life is a way of strengthening one’s character, reinforcing one’s values, and supporting one’s humility and gratitude.

I aspire to maintain a balance throughout the coming 23 more infusion sessions in this “second round” admitting and accepting annoyances and discomforts, but placing them in the context of hopefulness, mercy, gratitude and enormous good fortune. If you would, send a good thought my way that I succeed!

 

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

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.

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!

What I learned by sorting screws

Dear Friends,

Summary

I am tethered close to home by my chemo fanny pack and by my still disconcertingly frequent visits to the hospital, blood lab or Infusion Clinic. To be entirely candid, the tethering is due, more, to one of the side effects of my chemo that requires my being fairly close to a bathroom at critical times. Some readers don’t want to hear about such practical details, but they become important. Being confined to location gives me an opportunity to catch up on some domestic “housekeeping”; the kind that is altogether too easy, in real life, to let slide. This week I gathered together all the assorted boxes and jars of spare screws in my garage and began sorting and organizing them. Its remarkable how my brain is able to quickly slip into an unconscious active mode of its own, while I am engrossed in a mind-numbing and repetitive (but altogether satisfying) task. What can be extrapolated from screw sorting about my feelings about cancer knowledge?

Details

Sorting screws is a bit like working in an archeological trench. Much is revealed but not quite everything one might want to know. For example, examining a series of different screws assembled in order of observed age might reveal how screw design responded, over time, to deficiencies experienced in their use. The series might tell of the arrival of new manufacturing technologies. Nothing observed in an archeological “excavation” provides clarity about the personalities of the inventors of screws, nothing of the patents for which they may have applied or the business realities associated with screw manufacturing and distribution. What’s missing is often that which stimulates the greatest curiosity. With respect to sorting, itself, the screw sorter faces the always-intriguing challenge that librarians face in common with them: how to sort and classify the countless variables. Variations are always encountered when one begins to look for and recognize differences and unique characteristics associated with individual specimens. It is useless to have a jar full of miscellany at one’s disposal when working on something that requires “the proper” or “just the right” screw fastener. Organizing the collection in a way that access is facilitated to “just the right” specimen or item is intellectually and practically challenging. This is true whether dealing with a jar full of hundreds of screws or a cyberspace “cloud” filled with thousands of links, images, documents and notes.

Random assortment of screws from one of my containers.

When it comes to screws, there’s a longer list of pertinent attributes to identify and sort than one might, at first, expect:

Type (Machine screw or wood screw? I’m restricting myself only to sorting the hundreds of wood screws in my containers; segregating machine screws will come later.)
Length (Often the first consideration I have when looking for a useful one to use is “how long is it?”.)
Guage (The thickness or diameter of the shank of the screw is measured in increments from 1-24. The diameter can be measured as a root diameter [the shank less the height of the threads] or, more commonly, as a shank diameter [which is measured across the top of the threads]).
Material (Is the screw made of brass, tool steel, stainless steel, galvanized, etc.?)
Head design (Does it have a flat head, a round head or a pan head; will the head be recessed or left surface proud?)
Thread pitch and thread count (This influences how easily a screw can be set. Is the screw self-starting? Has it been designed for rapid insertion? How many threads are there per inch? How many spirals of thread?)
Purpose (Is this screw designed for use with wood?  for masonry?  for chipboard?  for electrical?  for sheetrock?  for something else?)
Driving Surface (Does the screw have a slotted head for use with a standard screwdriver, or a customized head for one of the several newer type of driving bits such as Phillips, hex, Allen, Torx, etc.? The design of the head essentially describes what kind of tool must be used to drive the screw, but it also has a relation to how easily the screw can be driven, and—its corollary—how difficult it might be to remove.)
Standard (Conforming or not? …to which standards body?)
Condition (Is it a “keeper” to be re-used or shall I toss it out as “damaged beyond re-use”. Screws are durable. Perversely, there are not too many to toss; they’ll have to be put away for future use.)
I’m going to have to pick up a few more plastic gadget boxes with flexible dividers to separate all these variables into some useful configuration!

Observation can deduce information about the screws themselves, but the study of so common an item can, in addition, reveal a lot about the evolution of carpentry after the Industrial Revolution. A new direction emerged at that historical point that led to the mechanization of cabinet making. It eventually evolved into the mass production of furnishing components. Along the way, the trend facilitated the ushering in of a modernist style of interior decoration. Those changes even influenced architectural design. An astute screw sorter could conceivably write up such observations. In the doing, he/she might realize an unexpected association: that at its inception, the new carpentry was—to a significant extent—based on re-use of durable and valuable components, and at the same time, perhaps, witnessed the general demise of re-usability.[1]

It would take a couple years of agreeable study, followed by a few more of concentrated writing, to worthily describe the history of the lowly screw (and its wider context of social mercantile evolution). It might be an undertaking that would appeal to Henry Petroski, whose The Pencil: A History of Design and Circumstance, published by Knopf in 1993, has become the definitive work about lead pencils and their development. Petroski describes the evolution of the pencil from its humble origins to its grander status of a once-ubiquitous implement everyone owned: the iconic yellow hexagonal Dixon Ticonderoga #2 graphite pencil. In telling the story of the pencil, Petroski relates a lot of social history, peppered with insights about art, communication, business, competition, writing and even poetry.  The same dramatic and literary elements that were combined to make The Pencil satisfying to read, exist in the history of the screw. Archimedes depicted the first screw: a spiral device with which to elevate water. Leonardo Da Vinci imagined the screw as potentially enabling flight. Today’s corrosive resistant stainless steel screw fasteners (and others made from rarer metals and alloys) circumnavigate the earth, reliably holding together space stations.

In contrast to the likelihood that it might (only) take a dozen or fewer years to complete a worthy history of the screw, its startling to consider how many skilled professionals and researchers; how many worldwide institutions and laboratories; how may decades; how many millions of dollars; and how many patients and sufferers have dedicated their careers (and lives) to assembling all that we know about cancer… and to confront just how much is yet unknown after such a massive global effort. I admit to possessing an ignorant frustration about the state of our knowledge despite the amazing progress that has been made in treatment protocols. I should know better; yet can’t shake off the dismay. I do not, in the slightest, wish to denigrate the practical progress of treatments. (I wouldn’t dare, being fully confident that my own treatment will lead to my complete remission and cure.) Nevertheless, it seems perverse that we should collectively expend such effort and still fundamentally know so little about triggers or causes, environmental or nutritional influences, or the mechanisms of infection of cancers.

If I stop to notice my subconscious mind, clues to the complexity of the task of cancer researchers are revealed to me in the mundane task of sorting screws. Other clues come to me from seemingly casual conversations.

I mentioned to a nurse at my Infusion Clinic that I’ve been gratefully surprised (enormously so) by the milder-than-expected side-effects I was, thus far, experiencing from my treatment. She explained that colon cancer patients frequently endured milder side-effects than most. Colon cancer has been well-described and is generally “well-behaved” as far as cancers go. Certain medications have proven effective in mitigating unwanted side-effects. I’m given a dose of such medications, in pill form, before each of my infusions. “The same cannot be said”, she continued, “of patients with breast cancer.” Clinicians and researchers have discovered that not all breast cancers are alike. They have identified several distinct kinds of breast cancer. [This will require a few new sorting categories.] Each responds with various success [Allowance will be needed in the databases for annotations.] to different treatment protocols [A few additional criteria about protocols will need to be included and appropriately linked to individual cancers. Privacy protections will have to be accommodated to provide statistically useful information, but not individual names or identifications.] and each responds (or not), to a mixture of different combinations of drugs [We’ll need to add footnotes, qualifiers and descriptions of source documentation. We’ll also want to provide external links to data sets by which future researchers will be able to replicate and confirm hypothetical results, etc.] “Added to which” she tossed over her shoulder as she hurried to attend to another patient, “different personalities, or even their bodies, react very differently to the same treatment. We don’t yet know if it is physical, psychological, racial, or some combination of those… or of something else, entirely. But we’ll find out.”

The challenge of sorting medical information[2] is magnified by the absence of needed data; indeed, the absence of data whose very absence may not yet be even suspected.

I, myself, have been left with a handful of un-sortable screws that turned up in my collection. They are oddly shaped screws. I can’t recall ever having seen their like. I don’t know what they were made for… what is their particular function. I have yet to (but will) find out what kind of screws these are. Curiosity, alone, will drive me. My annoyance at finding unidentifiable screw fasteners is hardly comparable with the highly important challenge of discovering life-critical evidence within worldwide specialized data repositories. How does one satisfy the goal of answering why it might be that two individuals suffering, apparently, from the same cancer respond differently to identical treatment protocols? The query is made worse by not knowing if the answer is, in truth, lurking somewhere in cyberspace; or if the answer is to be found in an observation that has yet to be made and recorded.

What’s to be concluded from this screwy rumination?[3]

It is surely nothing less than to prompt me to send a conscious and heartfelt salute to the men and women who participate in the search for knowledge about our bodies, our diseases, our corporeal nature. Theirs is a meticulous, painstaking and indescribably complex task. Whereas I was struggling (while, in truth, relaxing) by undertaking a simple task that proved itself more complex than might have been anticipated, cancer researchers struggle with a complex task that has proven immense. Yet they persevere. Both tasks—mine and theirs—show signs of progress being made in sorting and classification. I expect that both sets of information will submit to useful organizational solutions. Learning about and managing information (irrespective of its subject matter or format), making it available for future analysis, retrieval and useful application is a new discipline of our own information age… changed as much as the screw changed artisanal carpentry. One can only hope that the challenges of the new discipline attracts genius intellects. Such individuals will have important and satisfying life careers.

Chet

Notes

[1] The following age—the one in which we now live—no longer values reusability in the same way. Our age depends, economically at least, on replacement. We purchase millions of smart phones, for example. Two years, hence, we will discard them in order to purchase other millions of the most up-to-date versions. I’m not certain whether this is inherently wrong-headed, or, on balance, beneficial. The observation simply reveals a continuum along which we can define how we conserve or consume materials in order to create more comfortable environments for ourselves. Some would claim that replacing old with improved communication capabilities makes us more efficient. Others would disagree. I believe it is generally wiser to observe and consider the implications of changes in our lives, rather than suffer their effects having entirely overlooked the causes.

[2] It is worth noting that the designation “medical information” is not sufficiently encompassing. Today’s cancer research deals with disciplines as diverse as chemistry, biology, immunology, crystallography, physics, molecular biology… the list is seemingly endless. Yet insights from each, if they can be combined into a concentrated understanding of interaction related to cancers, might eventually answer core questions that cancer researchers are prompted to ask from the grounding of their own specialized experience and observation.

[3] One sometimes hears an admonition that individuals should not exaggerate their efforts to satisfy (mere) bodily concerns; …that some variety of detachment from the physical body is beneficial to the spirit …that our goal is an afterlife where all will be rosy and well (if that’s where we end up). But, for this existence at least, the Creator has endowed us with both spirit and body. One might reasonably conclude that the second is at least equal to the first (else why would a corporeal nature have been given us?). To participate in the fullness of Creation (as is our goal and privilege), demands respect for and attention to both. Under such circumstances, it would be unthinkable that the eradication of such an incidious disease as cancer would remain beyond our grasp. It is consoling to recognize that the path, itself, has been, and will continue to be, replete with learning.

Ingrained habits die hard

Dear Friends,

Summary

Its a natural inclination for me to want to learn as much as possible about my illness. My attitude is obviously shared by others. It is certainly reinforced by my immediate community of friends. Folks have been referring me to cancer bibliographies and have been sending scanned articles from medical journals for me to read. Others have sent reference books for me to add to my reading pile. I’ve welcomed them all. It appeared irresponsible of me not to conscientiously get to “know thy [my] enemy.” Lately, I’ve been wondering if the nature of knowledge has changed so much in my lifetime that I should master new techniques to keep up with the growing corpus of knowledge, even in my “little corner” of cancer maladies. But what may be required of me, might in fact be different from adopting new searching and filtering techniques. I may need to understand my role differently, and vest myself with an entirely different attitude about learning and the nature of applied knowledge in my case.

Details

Siddartha Mukherjee’s The Emperor of all Maladies: a biography of cancer, was published by Scribner just last year. Its a book well worth reading for sheer enjoyment, whether one is a cancer patient or not. In his comprehensive work, Mukherjee (a Stanford grad now on the faculty and on the clinical staff at the Columbia University Medical Center) sets the context for his “biography” with a historical overview of what is known about the incidence of cancer in human beings. In the doing, he relates numerous fascinating vignettes of individual researchers, practitioners and patients over the historical record of the disease. Descriptions of interventions and protocols are provided with unstinting candor. The author doesn’t shirk from explaining how the experience of physicians confronting this confounding disease led, sometimes, to bizarre conclusions and deadly methods of treatment. But he reinforces an optimistic belief that—inexorably, and despite sometimes laughable dead-ends—each historical step led to insight and improved understanding about the disease and its effective treatment. Of particular interest to me was the author’s explanation of the intricate web of institutional collaboration and the eventual governmental coordination of cancer research in the United States. In the section of the book that deals with these institutional relationships, Mukherjee describes the grass-roots social advocacy movements that emerged just decades ago, and the ultimately political maneuverings on which funding for cancer research depends.

I found interesting, as well, the several professional medical journal articles I read. Some described, in meticulous dispassionate detail, minute elements of cell structure; others, the various observed processes of metastasization; still others, the elusive chemical traces of the spread or curtailment of cancers. The articles that documented the efficacy of particular chemotherapies to thwart cancer waywardness filled me admiration. Highly sophisticated methodologies are presently employed to study what might be happening in the body as various chemicals are deployed towards their targets. As I read, it became abundantly clear (were it not sufficiently obvious from the very beginning) that I could no more play “catch-up” with the varied specialties involved in my treatment than I can, today, maintain my car in top running condition (my vehicle being less complicated, by far, than my body.)

The first automobile I could claim as “my own” was a four-cylinder Ford “Consul” my Dad had acquired, who knows where, at fourth- or umpteenth-hand for my use. He hoped, I know, that I’d take an interest in helping him dismantle the engine, replace the compression rings on the cylinders, adjust all the timings, and put everything together again to make the engine purr. More challenging (his eyes lit up at the prospect) was taking apart the comparatively simple transmission, replacing the broken teeth of the multiple interlocked gears, with their minutely-calibrated slip-rings, with new ones (some of which he manufactured himself). The car my Dad purchased was a junkyard wreck. The car he restored was a beauty to drive and to behold. After the mechanical overhaul was complete, it even sported a shiny metallic blue paint job. Fortunately, some of my Dad’s joy in making broken things right, has filtered down (who knows by what genetic mechanism?) to his grandson. My son, Michał, occasionally purchases worn-out milk delivery trucks on eBay. He flies to retrieve the carcasses and shepherds them home, where he lavishes enough attention on their repair and restoration to incorporate the trucks into the small fleet of vintage milk-delivery trucks he operates on the San Francisco Peninsula.

The point of this nostalgia is that there was a time, in my lifetime, when automobiles were fixable by their owners. Monica’s Uncle Bob took apart and put back together again in working order, an assortment of broken mantle and wall clocks, much to the amazement of all who knew him (and much to his relaxed satisfaction). I, myself, could competently change the spark plugs on my Consul, complete with properly adjusting the firing gaps on the plugs before replacing them into their cylinders. The mastery of these useful skills depended, in large part, on access to instruction manuals and books. Mechanical devices (like the relatively simple automobiles of my young adulthood) have evolved into the computerized and mother-boarded vehicles of the present. These no longer come supplied with owner’s manuals. If one grows up with the concept that maintaining vehicles is an owner’s responsibility, one easily translates that attitude towards one’s own body. I’m writing about cars, here. They are entirely crude metaphors—but useful ones—to explain what has taken place in the acquisition and mastery of scientific knowledge during the same span of time.

The history of Science—particularly in recent decades—is marked by astounding growth in better understanding the world we inhabit and how it works. Even so, our knowledge is sketchy, at best. Acquisition of scientific knowledge, in my lifetime, has been catapulted forward, however, by communications technologies. These allow massive amounts of data to be stored in a form that allows future access, without requiring prior knowledge about what might need to be retrieved, nor for what purpose. Dauntingly complicated (except, perhaps, to their programmers) software tools have been designed that enable professional collaboration. What has replaced individual competence is, today, the leveraging of insights and experiences of multiple researchers and clinicians (wherever in the world they may be.) What has replaced the owner’s manual, is retrievability of highly beneficial statistical and evidentiary data from patients like me (wherever such data happens to exist… even in a “cloud”). What has replaced the adjustable wrench, is computer-assisted laboratory and clinical equipment of incredible dexterity and sensitivity. As the result of such leveraging, scientific knowledge is expanding geometrically, rather than at the slower linear progression that may have characterized it in the past.

Changes like these in the volume of data and the specialization of discipline have considerable practical consequences for patients like myself. What I know, that is actionable, is precious little (even with respect to my 2001 automobile). My participation in my recovery requires extremely little knowledge of me of the kind I became trained to seek throughout my life. As a percentage of the the growing corpus of knowledge about cancer, my own experiential bit is an ever-diminishing miniscule. Neither can I consult an “owner’s manual” and pretend to be the professional engineer my Dad was (or the armchair physician I might have hoped to have become through my reading.) Nor can I deny my vulnerability (and here’s the rub), by claiming to be able to comprehend anything at all about what is happening with respect to my medical problem. I cannot know all that specialists know, even though I know they don’t know as much as they will know in the future. I cannot know all that generalists know, because I know they know less than the specialists do about the systemic interactions of chemotherapies, cancers, ecologies, personalities, families, and communities. I am left with possibly evaluating the overall positive direction in which protocols for treating cancer are developed. That I can study. I can also look up the statistical success rates of the interventional techniques that are employed at various institutions. But both of these are far removed from the disease, itself. The information consists of distant indicators, at best; and can be misleading, at worst.

What, then, is the nature of my participation in my recovery?  It must be different from the time-honored “study and ‘know’ thine enemy”. My Dad had some clues for me.

My Dad deliberately invoked sensus communis as something august (which is why he invariably used the Latin term) and essential (which is why he repeatedly exhorted me [sometimes with frustrated exasperation, I must admit] to employ it in and throughout my life.) Common sense, as he saw it, depends on a knowledge of self, coupled with a practical command of how the world works. It demands attentiveness. It expects one to predict what to expect, ask pertinent questions, evaluate hypotheses and, gradually, accumulate wisdom. Common sense was, to my Dad, a corollary to “book-learning” and equally important to it. Applying common sense is similarly useful in evaluating when and how to trust others upon whom one increasingly needs to depend in this more complicated and interconnected world.

My reading has informed me about the sophistication and complexity of cancer research. What my reading hasn’t done is educate me in how to be a patient. Nor does my reading help me come to terms with the fact that—like it or not—being a patient is precisely (and exclusively) what my role is. I think I envisioned my role to be more. I think I felt if I could at least absorb enough of the literature, it would objectify my cancer. That would enable me to deny that the place where “the dread disease” found a stronghold was actually within me… in my own body. Common sense admits to two realities. First, that I’ll never know enough about my illness to speak authoritatively. (Although I may get away with it if I use the proper tone of voice at a cocktail party at which there are no medical persons present.) Second, that I can only participate in the cancer-knowledge community as a patient.

To play my role as patient constructively, I need, first, to be highly attentive to my recovery. Then, I need to be entirely willing (perhaps even eager) to accurately share my experiences of side-effects, reactions to therapies, responses to treatments in as alert a manner as possible. I must be compelled that my experience will contribute to the dataset of knowledge on which some future progress might be made. I must take my role seriously, but under no circumstance exaggerate or denigrate it. Such an orientation forcibly changes my attitude for the good. Neither should I second-guess my care-giver’s decisions; nor am I merely a helpless bystander in the face of my ignorance.

Accordingly, what I will report on my next visit to the Cancer Clinic next week is that my chemotherapy has been—thus far—kind to me (though, I trust, not so kind to my cancer. That yet remains to be seen.) Many foods taste metallic. I fear I may smell “chemical”. My normally regular circadian rhythms of bathroom visits for elimination have become unpredictable. Various degrees of diarrhea are common. Feelings (perhaps imaginary, caused by my being worried about it) of neuropathy seem to exist in my toes. Oddly, I experience a sharp disabling pain of 15-45 seconds’ duration, every time I take food or drink into my mouth after not having eaten for a period of half an hour or so. (This side-effect has been reported by one other patient in my Cancer Clinic.) The pain is centered beneath my ear lobes, about the point where my jaw hinges and where, apparently, several salivary glands are located. Other than these entirely manageable effects, I feel physically well. But I am paying attention to anything else I can dutifully and accurately report.

If I cannot be more than a patient, I can be an active, attentive patient. I can take pride in that.

Chet

Related

Mukherhjee’s Book on Amazon

 

 

Self-attention vs. Self-centeredness

Summary

One of the unexpected side-effects of undergoing cancer treatment might be in the way that the required self-reflection (pay attention to your body, note your side effects, watch your reactions, observe whether you have tell-tale symptoms of one kind or another, eat carefully, etc.) can easily slip into self-centeredness. The former is good; the latter—at least in my ethical and moral training—is to be avoided… but it ain’t always easy to do.

Detail

Once one begins to ingest the cocktail of poisons that are aimed at thwarting the action of cancer cells in one’s body, it is essential that the patient become highly observant of reactions and effects. Through such attention, the patient becomes a more active participant in their own treatment. This attitude is as good, psychologically, for care givers as it is for patients. Care givers cannot be exclusively responsible for the ultimate success or failure of a regimen of treatment.  It is too much responsibility to bear. Too much of the success is dependent on things beyond their possible control. Neither should patients feel helpless in the face of a fearsome disease (exaggerated as it may be, even inadvertently, by fund-raising walks, advertising commercials for wonder-drugs or ads for exceptional institutional care-giving).

Still, in a patient-centered Cancer Clinic, the patient is often intentionally made to feel the center of the operation. The setting at my Clinic is congenial and light-filled. The nurses, uniformly and amazingly patient; knowledgeable, and competent, do everything they can to calm fears, eliminate or diminish discomfort, maintain an optimistic and cheerful attitude. They do all they can to accommodate the different personalities and emotional states of their patients.

The apparent… (I’m not a doctor nor a professional in the field… I’m merely an affected individual) methodology of choice for treating my type of cancer is based on the observation that it metastasizes rapidly. The treatment that has developed is one that identifies cells in the body that are characterized by rapid growth. A protocol of chemicals targets such cells for extermination. What the current standard of care seems unable to do is to discriminate between cells that grow rapidly because of a cancerous waywardness and those that grow rapidly because of a natural benefit for the body.

Many of the side-effects of chemotherapy are caused by the indiscriminate effect the drugs have on benign fast-growing cells. Such common effects as hair-thinning and loss, fingernail changes, skin changes, digestive tract oddities, taste suppression, nausea, etc. mainly seem to have to do with the way drugs affect each of those areas. In common, these are areas of the body characterized by the presence of naturally fast-growing cells.  The unwanted side-effects demonstrate, in a perverted way, that chemotherapy is probably working. If the chemo affects the benign cells the way it does—so goes the logic—it surely is effecting the cancerous ones, too.  But anything can get out of hand.

So patients are told to monitor the changes they experience. Since many of these have to do with self-image (loss of hair) and comfort (tasting food one likes) appearance (changing skin tone, brittle fingernails) and functions (digestive nausea, changes in bowel patterns) the patient can become preoccupied and self-centered in attending to and paying attention to such unwelcome and sometimes distressing physical changes.

The unintended consequences of such self-attention can be a diminished empathy towards family and friends who, themselves, grieve and suffer over the diagnosis and prospects faced by the patient. I’m at the very beginning of my treatment but I can already recognize how much more self-aware I am of my various physical discomforts, minimal reactions, previously ignorable pains. I can see how cautious I am about nutrition and healing. If I just redirect my attention, however, I can see that my friends (among whom I’d count Monica as the closest) are accommodating themselves to my condition, and that that accommodation deserves attention, too; and, indeed, the greatest respect and thanksgiving.

Its a kind of conundrum.  I’m called to take charge of my care by becoming attentive to its details; but I’m obliged not to be unaware of the concern and companionship of those around me, especially inasmuch as the former is good for my physical well-being, while the latter recognizes the injunction of the Evangelist to have comfort in the fact that we, each of us, will be taken care of … for why would we not be, if such wondrous care is given, even to the “lilies of the field”?

Chet