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

09 Monday Jan 2012

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appearance, attitude, authoritative advice, certainty, cessation, collateral damage, condition, consultative, irremediable, joyful, observation, psychological, quality of life, risk, stoicism, termination

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 8^th cycle, Monica and I were swayed by the fact that we had passed the 6^th 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 8^th 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

03 Tuesday Jan 2012

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collateral damage, competitive opinions, conundrum, decision-making, decisions, dreams, hesitation, insufficient knowledge, trust

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.)

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.
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.
Waiting to see if there is any recurrence years forward, doesn’t help us in our present situation.
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.)
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.

“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.
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.
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.
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

22 Thursday Dec 2011

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apathy, calming, communicate, confirmation, consecration, data, dripping nose, emperors, ennui, finger, forget, holiday, information, kings, knowledge, laying on, learn, messsage, mind, nerve, nerves, neuropathy, process, sacrament, Sacrament of the Sick, sentient, shake hands, side-effects, specialized nerves, touch

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

26 Saturday Nov 2011

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

Dear Friends,

Summary

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

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

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

Detail

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

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

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

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

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

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

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

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

___________

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

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

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

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

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

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

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

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

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

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

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

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

—–

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

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

Chet

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

26 Wednesday Oct 2011

Posted by Czet in Uncategorized

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anonymized data, apps, blood pressure, camp, confusion, dementia, epidimiology, gestures, glucose, iBP, iPhone, nutrition, privacy, public policy, smart phone, software

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

16 Sunday Oct 2011

Posted by Czet in Uncategorized

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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, efferent) neurons 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

What I learned by sorting screws

05 Wednesday Oct 2011

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Archimedes, breast cancer, categories, colon cancer, detachment, Dixon Ticonderoga, Henry Petroski, Leonardo Da Vinci, replacement, respect, reusability, screws, side-effects

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.

Chemo Infusion 3/12—Life vs. Death

28 Wednesday Sep 2011

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

Summary

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

Detail

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

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

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

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

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

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

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

Chet

Ingrained habits die hard

22 Thursday Sep 2011

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access, actionable, advocacy, attentive, biography, book-learning, cancer research, cloud, Collaboration, common sense, Consul, coordination, Emperor of all Maladies, enemy, fixable, funding, generalists, habits, Jan M. Grycz, medical journals, metallic, Michal, Mukherjee, optimism, optimistic, owner's manuals, participation, patient, reading, research, retrieval, role, scientific knowledge, self, sensus communis, side-effects, specialists, Uncle Bob, vulnerability

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

Mukherhjee’s Book on Amazon

Chemo Infusion 2/12—”What, Me Worry?”

14 Wednesday Sep 2011

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accidents, Alfred E. Neuman, amputation, Anastasia, apprehension, ArtsWithin, Civil War surgery, conundra, conundrum, corroboration, ego, embarrassment, epilepsy, fear, fright, helplessness, humiliation, ignorance, infusion room, Losing Control, lost, machismo, medieval cities, nanotechnology, nurses, overdose, pain, papyrus, petit mal, tuburous sclerosis

Dear Friends,

Summary

This week has been characterized, unusually, by my experiencing a series of mental flashbacks of members of my family who have needed medical intervention for their serious diseases. Not entirely unrelated are the following factoids: • I once had the opportunity to digitize a fragment of papyrus (dating from 3,000 B.C.), that describes initial Egyptian investigations into brain surgery. • There exist hair-raising stories describing Civil War surgeries in which doctors, recognizing, by then, that speed of operation could minimize shock in a patient, competed against one another in ultra-quick sawing. Superior surgeons completed amputations in record time—albeit sometimes (and more than occasionally, as a matter of written record)—accidentally lopping off adjoining appendages in addition to intended limbs.) • Today, molecular and nanotechnologies promise another revolution in medical practice. Emerging from crude, investigatory beginnings, physicians have progressively mastered knowledge of manifold systems, molecular interactions and interventional techniques.

Yet for all that comforting reality, I wish I had a bit more of Alfred E. Neuman’s attitude of “What, me worry?”

Details

One weekend of my life I will surely never forget took place in the early 1970s. My eldest daughter, Anastasia, was but a toddler. She suffered from petite mal seizures of unknown etiology, for which she took liquid medications. On my way home that Friday I stopped by the pharmacy to pick up a fresh bottle. Typically during a petit mal, we’d observe Anastasia suddenly stop whatever she may have been doing. A glassy-eyed unfocused stare would come over her face for 10 or 15 (?) seconds as her body and limbs took on an uncontrolled rigid jerkiness. Seconds later, all the symptoms would disappear in a flash. Anastasia would appear to be slightly disoriented for a second. Then, she would blithely return to whatever it was she was doing before the epilepsy struck her. But on that weekend’s Saturday morning, her mother and I watched one of Anastasia’s fits with horrible fascination. It had a longer duration than usual and was less controlled. Her body and arms swayed according to what appeared to be a macabre dance choreography. She was obviously more discomfited during and after the long episode. She seemed tired when she came out of it; seemingly, an eternity later.

What followed, of course, were urgent calls to doctor’s offices, hospitals, emergency rooms and pharmacies. (Communications have improved a lot over the past 40 years.) I was a callow father in my early thirties. I had no idea of the import of the innocent question that, in desperation, I blurted out after an otherwise frustratingly futile phone conversation I’d been having with a pharmacist: “Might there be any significance in the fact that Anastasia’s medicine is typically orange in color, but the bottle I picked up on Friday is raspberry in color?”

There was. As it turned out we had been, all unknowing, coaxing Anastasia to swallow a medication five times stronger than the dose prescribed for her. Accidents happen.

For those who have not met Anastasia, I should explain that the story of this accident ends well. She recovered from the overdose quickly (as toddlers do). Weeks later the genesis of her petit mals was definitively diagnosed as resulting from a disease called tuburous sclerosis. Doctors predicted that Anastasia would live into her teens; but that we could not expect her to survive longer than that. This coming November, our family fully expects to celebrate Anastasia’s 43rd birthday! Although disabled, Anastasia’s is a joyous and cheer-filled life. She works as a weaver in a sheltered workshop (and would gladly sell you some placemats, table runners, or other woven goods she and her colleagues are so proud to create). It surely looks as if she may outlive me! Predictions, even medical predictions, don’t always come true.

In my Cancer Clinic, I wear a wrist bracelet with my identification. Even so, as each new bag of medications is attached to the IV pole, the nurse asks me to state, aloud, my name and birthdate. When particular drugs are being prepared for infusion a second nurse is summoned to witness my answers as to my identity, and to corroborate that the medication being injected into me is the one that has been prescribed for me and not another patient. This procedure should console me… save for the fact that I know that such a regimen would not have been put into place had there not been prior experience of mistakes being made.

When I appeared at my Cancer Clinic last Friday it was to be “unhooked” from my fanny pack with its 48-hour continual infusion. I was greeted cheerfully by the attending nurse who said “You’ve been here before [and presumably know your way around]. Go on in, and get comfortable. Someone will be with you in just a moment.” Confidently, I strode down the hallway but quickly found myself in a warren of physician’s offices and small specialized laboratory rooms. I’d clearly gotten lost and didn’t belong there. Abashed, I retraced my steps and eventually found my way to the infusion rooms.

I’ve got a pretty good sense of direction. I didn’t even get very lost in the wonderfully crooked streets of Rome or Milan, or the anti-parallel ones of Krakow. [In the case of many Medieval Cities, the central nest of alleys and narrow lanes are not merely artifacts of geography or topography, but were intentionally designed to confound and confuse intruding marauders who might have penetrated the outer perimeter walls of the city.] So I was curious about having gotten lost in an office building… until I realized that, quite possibly (read “likely”), I didn’t really WANT to get to the infusion rooms.

Although culturally endorsed, its actually contrary to some deeply imbedded genetic code to admit Fear. Yet, for the past two days, on the run-up to only my second full days of chemotherapy, Monica noted that I’ve become increasingly apprehensive. I’ve felt it, too. I’m in the best of care and am possessed of the most competent academic and clinical advice about my condition. My chemotherapy is administered in sterile and professionally controlled circumstances by experienced and exceptionally well-trained nurses. But despite these rational understandings, I’m afraid! …of mistakes; …of possible pain; …of the integrity of my body being violated by incisions and needles; …of poison; …of my cancer; …of ignorance and the helplessness that comes from it; …of, perhaps, losing control; …of potential humiliation; of… of… of. [Its worth noting that these fears all relate to the ego.]

The mischievous face of Alfred E. Neuman mocks me with his iconic motto: “What, me worry?” Sure, me worry. And for good reason.

Its counter-productive to deny Fear. The machismo attitude comes from a desire to appear invincible to whatever it is one fears. But to the extent denial or machismo dulls Fear, it can be harmful. Nor, evidently, is rational analysis effective at dampening this primal instinct. Fear is a complex response upon which depends survival of individuals (and, indeed, species). Possessing Fear we can instantaneously respond to dangers, seen or felt. Fear prepares our body physically, mentally, and chemically to respond to a challenge. Fear heightens our senses and alerts our defensive attitude. Therefore: “Fear is our friend.”

Nevertheless, I feel embarrassed to admit to Fear particularly when I know, full well, the proper actions to take, and know that I WILL take them. [Isn’t Fear unnecessary under such conditions?] In addition, I am intensely conscious of what an extraordinary gift it is to have access to and to receive the care I’m undergoing. [Doesn’t Fear denigrate such an undeserved gift?] I am intellectually confident and, indeed, certain (as can be) that the treatment I’m receiving will rid me of my cancer. [So why be Fearful at all?] Yet, Fear exists.

My relation to Fear seems to be another conundrum and paradox. I’m becoming increasingly aware of living with such conundra. But despite the awkwardness I feel about feeling Fear, I am very grateful that this core instinct is not diminished in me.

I am frightened. I’ll go. But I’m right to be wary.

Chet

• About CEDARS (where Anastasia lives) and ArtistWithin (where Anastasia and her friends, the weavers, illustrators and ceramicists sell their goods to the public) — http://www.thecedarsofmarin.org/articles1.aspx

• About MAD Magazine and Alfred E. Neuman — http://en.wikipedia.org/wiki/Mad_(magazine)

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~ Czesław Jan Grycz

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