Chapter Two

Dear Friends,

Chapter Two…

…….…prior to which our Narrator…
1. …received cautious news that his colon cancer was “in remission”. Hearing this…
2. …he was unaccountably reluctant to share the news or blog about it; when…
3. …shortly (3-4 months later) during a carefully aggressive monitoring using CT scans and followup PET scans, doctors discovered that two marble-sized colon cancer tumors had lodged and grown rapidly in the nourishing environment of his liver, far from easy access to surgical excision; in response to which…
4. …able surgeons, stubbornly immune to mere logistical difficulties, responded with rapid alacrity and admitted our Narrator—almost immediately after discovery of the tumors (and just before Christmas)—to the hospital, to undergo a long and complicated liver resection operation to remove the tumors; in response to which…
5. …Monica and I await our oncologist’s recommendations about next steps; and…
6. …we continue, prayerfully, to stumble into the unknown future.

Detail

I don’t have the necessary medical training to possess easy command of the proper terminology and vocabulary, but… following are a few of the most important things I believe we are, today, understanding about cancer:

Genesis

Microbiologists now understand that specific cancers (there are many different kinds, each with their individual characteristics) have insinuated themselves into the fundamental genetic construct of our DNA. It is quite possible that the initial insinuation into our human genome took place thousands of generations ago. If this is correct, then cancer (which Siddartha Mukerjee defined in his admirable and thorough recent “biography” of cancer as “The Emperor of all Maladies” has, perhaps, co-existed with us humans for millennia. This evokes a very different awareness of Pogo’s “We have met the enemy, and he is us.” The various cultural metaphors that claim that both good and bad resides in each human being are also thus vindicated in the physical biological realm and put in shocking high relief.

Action

Oncologists have long studied the behavior of cancer cells and their unbridled growth. Cancer cells exhibit a unique attribute in that, once stimulated into activity, they appear to lose a normal cell’s inborn mechanism eventually “to die” and cease activity. It is as if cancer cells have discovered a way to achieve a kind of immortality. Indeed, cell biologists, today, study cancer cells in their laboratories that have directly descended from cells originally taken from one woman, a patient who, herself, died, now, decades ago! Certain chemotherapies exploit this constant and rapid replication by targeting rapid cellular growth as loci at which to deliver toxic chemical substances designed to kill the cells. Refinements are continually sought to distinguish the rapid replication of dangerous cancer cells from the rapid generation of beneficially evolving cells like hair follicles or digestive wall membranes.

Apart from the incontrovertible biological evidence about the workings of cancer cells, there are cultural echoes, again, principally in mythology, cautioning against the lure of the “fountain of youth” or describing the unintended consequences of Midas’ touch.

  Pathways

A focus of increasing attention for epidemiologists are the biological/cellular pathways through which cancer cells appear to communicate with one another to “stimulate” (one might be inclined to use the word “infect”) other cells. In my case, for example, it came as no surprise to my medical professional care-givers that my colon cancer reappeared, next, in my liver. There exists ample convincing evidence that this is one of the preferred evolutionary pathways colon cancer, particularly, exploits. Just what mechanisms enliven the pathways or stimulate the transmission of cancerous activity at one spot in the body to another are not yet known. The identified preferred pathways exist, at least, as promising targets for future research and therapies.

Stimulants

Finally, biologists are beginning to identify what substances, chemicals, infinitesimal elements can stimulate dormant cancer cells to “life”. These stimulants are more properly known as carcinogens. While the list of known carcinogens is growing (cigarette smoke, second-hand smoke, asbestos particles, certain petrochemicals, soot, some foods, etc.) precisely how they evoke a response in cells that appear to lie in wait in all human beings, why in some and not in others, in what concentrations or under what circumstances, is all rich ground for the minting of future MD’s and PhD’s.

So, for the time being, I will be subject to, perhaps crude, certainly experiential, therapies and remedies that will be prescribed by young doctors and clinicians who wish to find the proper therapies as much as I wish for them to do so. I cannot compete with their sophisticated understanding of what I’ve crudely outlined above, even though I can, perhaps, grow in my appreciation of what scientists have come to understand and how dreadfully complicated is what is not yet known. Be that as it may, I am confident and happy to turn over the care of my medical condition to the experts who have generously eked out a career in this forbidding territory.

What I may be better able to learn from, for my own well-being, if not specifically my body’s, is to examine the cultural and spiritual echoes that seem to resonate and whisper with each scientific discovery.

We’ll see… in future cancerblogs.

Chet

Ingrained habits die hard

Dear Friends,

Summary

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

Details

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

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

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

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

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

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

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

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

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

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

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

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

Chet

Related

Mukherhjee’s Book on Amazon