Peripheral Neuropathy and pickup-trucks

Dear Friends,

Prologue 

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

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

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

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

Summary

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

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

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

Detail

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

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

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

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

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

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

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

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

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

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

 

Chet

 

Notes

[1]  http://www.greatlibraries.org

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

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

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.