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

 

 

Chemo Infusion 1/12—Disclaimer, Specializations and Centralized Data

Dear Friends,

Summary

My chest port was successfully installed in a 1+ hour sedated operation on Tuesday (though, in truth, I was in the hospital several (long) hours for both pre-op and post-op activities). Yesterday Krysia drove me to the Cancer Clinic for my first chemo infusion.  It began around 9:30 a.m. and continued steadily (one bag of medications being sequentially replaced by another) until 3:45 p.m., by which time Monica had relieved Krysia and was to take me home. I was sent home with a little fanny pack containing a bottle of chemicals that needed to be infused, continually, for an additional 48 hours.  As I write this, I’m connected to the fanny pack through my chest port. I slept connected to the bag last night, have had it pumping away all day, and will have to sleep with it again tonight.  Tomorrow, when the bottle is exhausted, I report back to the Cancer Clinic to have it disconnected.  After that, I’ll have a week off, have some blood tests taken, and–blood results proving acceptable–will repeat the process on Wednesday 14th (and thence every two weeks for the next 6-7 months).

I’ve already experienced two side-effects: one, predicted; and one, not quite.  The first is that my blood sugars are elevated.  That is explained by a steroid drug that is part of my protocol.  The elevated blood sugars are likely a temporary aberration, as far as we can tell.  (We’ll be monitoring the levels.)  The second side effect is that whenever I attempt to put any food in my mouth (be it moist or dry, savory or sweet, etc.) I immediately react with a sharp pain right beneath my ear lobes, about the point where my jaw hinges. (Some of you may recall experiencing something of the kind when, as a child, you may have accidentally chomped down on a sour plum.)  What is causing this second effect is being explored at present. There have been previous patients at the Clinic who have reported similar side effects. Their records are posted in the archives for my benefit and the benefit of other incoming patients like me.

So, all continues to be well.  I’m delighted to be actively engaged, finally, in the process of ridding myself of the cancer that was first diagnosed six weeks or so, ago.  Since that time I’ve been involved in what I call “preparation and training.” Now I’m happy to be finally actively dealing with the elimination of the cancer.  It feel emotionally satisfying.

Details

Disclaimer

Before I delve into the details, I feel a preliminary observation needs to be stated at the outset:  It is clear from my reading and intuition—and it is verified by my observation of other patients at the Cancer Clinic—that each person reacts to their cancers differently, as they do to the medications that are prescribed for them. The protocols to treat individual cancers are themselves unique, having been formulated, as precisely as possible at any given point in time, through clinical observation of individual cancers and how each metastasizes.  The results of those studies are matched with laboratory analysis of the behavior of specific chemical molecules and compounds. The chemical prescriptions are precisely designed to thwart and curtail the damaging action of specific cancers.  Each is different; and each patient’s reaction to the chemistry is also different.

This is so complicated that nothing I can write about my personal experience can be directly applicable to any experience others undergoing cancer treatment may have, except in a most anecdotal and general way.  Whatever may be applicable or useful is likely merely to be how I convey my personal attitude about my own experience.  I suspect personal expressions are generally interesting to read because—in the aggregate—accounts of different personal reactions are ones from which we can glean bits and pieces to help us understand the variability of our individual, nevertheless common, human experience.

Specializations

Previously, I expressed my enthusiasm about the anticipated Chest Port that had been recommended to me.  I can now say my hopes have been vindicated.  Having a Chest Port through which the various poisons (er, “medicines”) can be administered is wonderful, obviating the individual, painful, top-of-the-hand IV insertions.  I’m becoming more aware of the specializations of service providers in the medical profession.  My Chest Port was installed by surgeons in the Interventional Radiology Department (a department I formerly never knew existed). I was sedated just above the level of consciousness at which I’d require an artificial breathing apparatus to help me breathe.  But I was thankfully uncomprehending of what was taking place as the surgeon sliced into my chest, at shoulder level, dug out (there’s probably a more appropriate and delicate term to be used here) a little “cave” into which he could slip the appliance (I called it a “doohickey” in a previous e-mail) and suture the wound shut.  Then, he attached a small tube to the appliance and snaked it further up into my shoulder, where he cut another slice so as to better grab the tube and insert it into the major vein heading into my heart.  Having made the insertion, he was then able to snake the tube further down towards my heart, tap everything into place, and close up the two slices with derma-glue (which is basically a form of super-glue detoxified and neutralized for surgical use).  The Chest Port appliance has a little membrane atop it, surrounded by Braille-like protuberances that can be felt, through my skin, by a qualified nurse.  She/he can then insert a special needle through my skin, and thence, through the membrane.  Once inserted through the membrane, the needle is held quite firmly. Access is thus easily provided directly to my circulatory system. The opening to my vein and heart, at the other end of my tube, is at a point where it can readily and rapidly circulate my chemical cocktail throughout my body.  One can even take blood draws through the port, should it begin to be difficult to obtain them in the regular way through my arms.  So its a very satisfying simple-but-effective device inserted by a specialist that was likely imagined and manufactured by a (mere) highly insightful and empathetic medical engineer, wherever in the hierarchy of medical status such a person might be positioned. I’ve benefitted from a huge variety of differing skills of the (already) more than dozens of individuals who have had responsibility for a unique and specialized piece of my care.

Online Document Database

My Clinic has all its health documents online in a centralized database.  My caregivers can see what every other caregiver has prescribed and what procedures I have gone through.  They can access all the relevant reports related to my previous care.  Not only that, but I, too (and my family) can have the same immediate access to the same information via a password protected web site: procedures, medications, reports, etc.; my entire health history.  The exciting benefit of this collection (of otherwise inert) data, is that its easy availability enables collaboration among disparate specialists (giving the inert data a form of life).  Having the data so easily accessible actively encourages collaboration.  It is easy to ask questions or make consulting phone calls because all the relevant data is at one’s fingertips, along with the contact information (e-mail addresses, phone numbers, pagers, etc.) of each of the specialists involved in my care.  This has reinforced my positive opinion of President Obama’s encouraging the conversion of medical information from paper to electronic form.  Its a good idea, “whose time has come”.  It can have many ancillary productive and economic benefits!

A more pedestrian observation I noticed yesterday is about the arrangement of my wallet!  I was surprised to find that the most convenient plastic card slot (the one that has “primacy of position” in my wallet) is presently occupied by my Medical Identification Card (so often must I retrieve and show it to someone).  The credit card that used to enjoy that favored position in my wallet had been displaced.  I was bemused to find it had been relegated somewhat lower and behind the Medical ID Card.  (I daresay, somewhat reluctantly, that the credit card will likely be obliged to return to demanding service in days to come!)  In the meanwhile I’ve been searching for the “Frequent Visits Program” to which I can enroll to collect awards points for each visit to the Cancer Clinic. I am looking forward to eventually trading in my multiple points for BIG PRIZES.  I haven’t found it yet… if you happen to know the URL, please send it to me.

I felt entirely well and energetic all day and reported for cantoring duty at the Cathedral at noon.  But I almost couldn’t lead the Communion song.  Having received the consecrated wafer on my tongue, I had to sit down to let the pain in my ears pass.  You would think, wouldn’t you, that the Good Lord would excuse reasonably devout people receiving Communion from suffering side effects of cancer treatments?!

Sorry to be so long in sharing these observations.  Brevity certainly doesn’t come easily to me.  That’s what the “Summary” and “Detail” sections (above) are about.  If you don’t want lengthy rumination, just read the Summary, stop, and delete the rest of the e-mail (or simply stop reading the blog entry).  The Summary will be sufficient to let you know that I’m doing well and continue to be appreciative for your support, prayers, notes, cards, and good thoughts.  They each contribute to a feeling of humility, goodwill and healthy optimism… nearly as important, I’m convinced, as the protocols of medications I’m receiving.  (Though I wouldn’t want to choose between them, if only one were on offer.)

Chet

Related

http://www.bardaccess.com/port-powerport.php