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

Summary

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

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

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

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

Detail

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

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

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

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

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

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

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

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

Screen images taken from the iBP web site.

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

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

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

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

"Beam me up, Scotty."

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

Chet

 

Notes

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

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

Chemo Infusion 4/12—Neuropathy

Summary

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

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

Detail

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

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

Shakespeare didn’t know the half of it.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Chet

What I learned by sorting screws

Dear Friends,

Summary

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

Details

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

Random assortment of screws from one of my containers.

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

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

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

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

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

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

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

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

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

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

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

Chet

Notes

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

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

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