Chemo Infusion 3/12—Life vs. Death

Summary

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

Detail

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

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

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

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

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

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

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

Chet

Ingrained habits die hard

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 2/12—”What, Me Worry?”

Dear Friends,

Summary

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

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

Details

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

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

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

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

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

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

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

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

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

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

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

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

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

Chet

Related

• About CEDARS (where Anastasia lives) and ArtistWithin (where Anastasia and her friends, the weavers, illustrators and ceramicists sell their goods to the public) — http://www.thecedarsofmarin.org/articles1.aspx
• About MAD Magazine and Alfred E. Neuman — http://en.wikipedia.org/wiki/Mad_(magazine)

Self-attention vs. Self-centeredness

Summary

One of the unexpected side-effects of undergoing cancer treatment might be in the way that the required self-reflection (pay attention to your body, note your side effects, watch your reactions, observe whether you have tell-tale symptoms of one kind or another, eat carefully, etc.) can easily slip into self-centeredness. The former is good; the latter—at least in my ethical and moral training—is to be avoided… but it ain’t always easy to do.

Detail

Once one begins to ingest the cocktail of poisons that are aimed at thwarting the action of cancer cells in one’s body, it is essential that the patient become highly observant of reactions and effects. Through such attention, the patient becomes a more active participant in their own treatment. This attitude is as good, psychologically, for care givers as it is for patients. Care givers cannot be exclusively responsible for the ultimate success or failure of a regimen of treatment.  It is too much responsibility to bear. Too much of the success is dependent on things beyond their possible control. Neither should patients feel helpless in the face of a fearsome disease (exaggerated as it may be, even inadvertently, by fund-raising walks, advertising commercials for wonder-drugs or ads for exceptional institutional care-giving).

Still, in a patient-centered Cancer Clinic, the patient is often intentionally made to feel the center of the operation. The setting at my Clinic is congenial and light-filled. The nurses, uniformly and amazingly patient; knowledgeable, and competent, do everything they can to calm fears, eliminate or diminish discomfort, maintain an optimistic and cheerful attitude. They do all they can to accommodate the different personalities and emotional states of their patients.

The apparent… (I’m not a doctor nor a professional in the field… I’m merely an affected individual) methodology of choice for treating my type of cancer is based on the observation that it metastasizes rapidly. The treatment that has developed is one that identifies cells in the body that are characterized by rapid growth. A protocol of chemicals targets such cells for extermination. What the current standard of care seems unable to do is to discriminate between cells that grow rapidly because of a cancerous waywardness and those that grow rapidly because of a natural benefit for the body.

Many of the side-effects of chemotherapy are caused by the indiscriminate effect the drugs have on benign fast-growing cells. Such common effects as hair-thinning and loss, fingernail changes, skin changes, digestive tract oddities, taste suppression, nausea, etc. mainly seem to have to do with the way drugs affect each of those areas. In common, these are areas of the body characterized by the presence of naturally fast-growing cells.  The unwanted side-effects demonstrate, in a perverted way, that chemotherapy is probably working. If the chemo affects the benign cells the way it does—so goes the logic—it surely is effecting the cancerous ones, too.  But anything can get out of hand.

So patients are told to monitor the changes they experience. Since many of these have to do with self-image (loss of hair) and comfort (tasting food one likes) appearance (changing skin tone, brittle fingernails) and functions (digestive nausea, changes in bowel patterns) the patient can become preoccupied and self-centered in attending to and paying attention to such unwelcome and sometimes distressing physical changes.

The unintended consequences of such self-attention can be a diminished empathy towards family and friends who, themselves, grieve and suffer over the diagnosis and prospects faced by the patient. I’m at the very beginning of my treatment but I can already recognize how much more self-aware I am of my various physical discomforts, minimal reactions, previously ignorable pains. I can see how cautious I am about nutrition and healing. If I just redirect my attention, however, I can see that my friends (among whom I’d count Monica as the closest) are accommodating themselves to my condition, and that that accommodation deserves attention, too; and, indeed, the greatest respect and thanksgiving.

Its a kind of conundrum.  I’m called to take charge of my care by becoming attentive to its details; but I’m obliged not to be unaware of the concern and companionship of those around me, especially inasmuch as the former is good for my physical well-being, while the latter recognizes the injunction of the Evangelist to have comfort in the fact that we, each of us, will be taken care of … for why would we not be, if such wondrous care is given, even to the “lilies of the field”?

Chet

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

Colectomy recuperation and “losing control”

Dear Friends,

Summary

All is fine.  The recovery from my colectomy surgery is as perfect as can be.  Very neat and smooth repair of the incisions, thanks to the careful attention of my surgeons and the little metal staples that held my abdomen together during the initial healing process.  I think I’ll be completely scarless when this is all through.  After such a short time, I’m able to bend, sit, walk and otherwise exercise with no distracting pain.  In addition, I seem to have passed the disconcerting period I experienced when I seemed to be competing with Rip Van Winkle in my ability to sleep incredibly long hours.  Twice this month, I was able to get to the noon Mass at Oakland’s Cathedral of Christ the Light where I’m the Thursday volunteer cantor.  With luck, I hope to resume docent duties, too, though that will likely depend on my reaction to the chemotherapy.

Detail

I feel I’m quite prepared and ready for the next phase: the actual chemotherapy treatment.  The Cancer Clinic conducted a very informative and comprehensive “Chemo Class” which gave me a lot of information about what I might expect.  I’m scheduled to have a subcutaneous port installed tomorrow.  The port is a plastic doohickey that will connect directly into one of my large chest veins, and whose opposite end will be somewhere under my skin in the area of my shoulder.  Being covered by my skin, the port won’t get contaminated or dirty, and will allow me to shower and otherwise remain as active as I want.  Its totally “cool” technology, and it will be permanently installed during the forthcoming 6-7 months.

When I report for my first chemo infusion Wednesday morning (31st), the nurses will be able to feel around and connect the IV drip directly through my skin to the doohickey (and thence to the vein for circulation).  This will eliminate the need for repeatedly installing an IV into the top of my hand.  Since I don’t find the “hand IV” very pleasant, the port appeals to me as a perfectly sensible alternative, especially since I’m scheduled for some 12 bi-monthly sessions of infusions (which would require a lot of repeated IV installations).  Each of the infusions will apparently take 3-4 hour sessions in the Cancer Clinic (so I’m expecting to catch up on the pile of books in my “to be read” pile).

In addition, as I presently understand my schedule, once each month I’ll be sent home with a little fanny pack that will pump additional chemicals into my chest port for 48 continuous hours.

The day before each infusion I’ll be having blood drawn to check the status of my platelets and check, especially, the count and condition of my white blood cells.  The white blood cells constitute one of the main components of the human immune system.  But they will also suffer degradation from the chemotherapy treatment.  So the docs will carefully analyze my blood counts (and especially monitor the count and condition of my white blood cells to make sure they don’t drop below a safe threshold).

Losing Control

The “losing control” is evidenced by the fact that nothing seems entirely permanent in this process.  Schedules change at a moment’s notice due either to evidence obtained from the numerous blood draws, CT scans, and other lab tests I’ve been taking, or doctor’s availability and unexpected schedule changes.  Monica and I have learned to “take it as it comes” (which, for organized and conscientious people is much easier to say than to experience.)  But the learning is not optional… its imposed.  So the frequent schedule changes and calls to come to the hospital for this or that test is taking a bit of an adjustment.  Nevertheless, I’m looking forward to actually beginning a regimen intended to battle the cancer.That will start next week, Wednesday morning.  A good time for continuing good thoughts.

Ending this obviously positive report, I wanted to share with you a temporary residual effect of removing the metal staples securing the surgical incisions from my colonectomy.  My skin around the former incisions is now attractively patterned with what looks like a tattoo of water striders.  I’ll be a little disappointed when those disappear as the physical healing continues!

Monica and I thank you for all your continuing good wishes (as do Michał, Anastasia, Stefan and Krysia).  Keep those good thoughts coming.  They are much appreciated (and obviously efficacious)!

Chet

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First news of health irregularities

Hi Family, Good Morning (er, afternoon!)

It’s hard to remember how many details I’ve given you of my current health episode, so I wanted to bring you up to date.

20 years ago – I discovered a growth in my ear that was surgically removed, biopsied, and found to be malignant. Subsequent consultations suggested that there was nothing more to be done because of the isolation of the ear from the rest of the body systems. (But i am reminded that in the subsequent 20 years I always felt like some cancer was lurking somewhere in my body and I always felt the traitor had gone underground… but might reappear at any time.)

3 weeks (?) ago – while undergoing a routine colonoscopy, the physician identified a “suspicious mass” and marked it for further testing. The pathology report came back with a finding of “invasive carcinoma”, the recommended response to which, was surgery. Based on what they knew at the time, it all looked simple enough, with the expectation that surgically removing the “suspicious mass” would be entirely “curative”.

2 weeks (?) ago – there followed a period in which spots were discovered on my adrenal gland, the surgeon heard a heart irregularity she wanted investigated before putting me under the knife, etc.

1 week (?) ago – having resolved all the potential heart and gland problems, a colectomy was scheduled. The surgeon hoped to do the whole procedure lapriscopically, but told me that if anything went awry, she was prepared to immediately “go open”, to which I agreed.

In the event, the lapriscopic procedure failed, so they had to do an almost full abdominal operation to excise a portion of my colon, remove a dozen or so surrounding lymph glands, sew back together the two ends on my colon from where they had cut out the cancerous part, and then seal my tummy back up. (I can’t bend over far enough to see, but in addition to numerous stitches, Krysia and Monica have counted some 20 stainless steel staples that are employed, these days, to hold the skin and tissue sections together.) So a majorish abdominal invasion.  Someone observed that I had “FrankenTummy”.

I am slightly diabetic, and diabetes always complicates medical procedures. Since I was undergoing a stressful operation, my body responded by skyrocketing my blood sugar. While entirely reasonable (and even desirable) for stress, high sugar levels are very bad for healing and dangerous for a recurrence of cellulitis (because bacteria LOVE and thrive on sugars). So there was a bit of drama during my recuperation as the doctors worried my blood sugars down. In any case, by Friday, everyone thought I’d be better off recuperating at home, which I’m doing now. Blood sugars are still wobbly, bowel movements are totally unpredictable, my stomach makes incredible never-before-heard gurgling sounds (in four part harmony), but I seem to feel stronger hour by hour.

So next week, sometime, I guess I’ll find out what the oncologists recommend in light of the most recent pathology report (on the section of colon and lymph glands that were removed). The pathology report shows the cancer has involved at least one of the fourteen glands removed during the operation, and I have, as yet, no idea what that may mean. We’ll soon see what’s next on this life journey!

Great! So now we are completely up to date. Thanks for your prayers and good thoughts!

Sijo

the cancer journal of Czesław Jan Grycz…

Update

• On the 3rd of October 2016, I underwent my twice-yearly CT Scan. Heretofor, upon reviewing the results of the scan, my oncologist could say, “The tumors are there. They are growing. But they are growing very slowly. I’d recommend ‘watching and waiting’.”

I should back up a bit and explain that colon cancer is known to metastasize, first to the liver and, next, to the lungs. When my colon cancer was discovered, I underwent a surgical removal of the affected parts of my colon and lymph nodes. Later, I underwent another surgery in which three chunks of affected liver tissue was excised. Since then, we’ve been monitoring the growth of tumors in my lungs. The twice-yearly CT scans were scheduled for this purpose.  This time, however, after 42 generous and welcome months of no symptoms and no discomfort, our oncologist reported, “The tumors have continued to grow. Because of their proximity to your windpipe, this may be the time to begin a second round of chemo. We will aim to shrink and slow down the growth of your tumors. Should your windpipe becomes compromised you’ll run the risk of greater susceptibility to pneumonia and other complications. We want to avoid that.” So, on Monday, 10th of October 2016, I returned to the Cancer Infusion Center for the 1st chemo infusion of my 2nd round of chemotherapeutic treatment. Simultaneously, I determined to  resurrect my cancerblog.

Previous Posting

• On June 20,2011, all unsuspecting, I registered at my hospital for a routine colonoscopy. During the procedure the physician discovered a “suspicious mass.”  A snippet of tissue was extracted and sent to the Pathology Lab. It came back marked as “invasive carcinoma”.

• On July 18, 2011, having undergone a flurry of blood tests, CT scans, and echocardiograms, I underwent a surgical colectomy. The part of my colon consisting of the “suspicious mass” was removed, along with some surrounding tissue and lymph nodes. These were also forwarded to the Pathology Lab.  The results were returned to my surgeon and sent on to the Oncology Department of the hospital. From them my wife, Monica, and I learned their diagnosis that I suffered from Stage 3 Colon Cancer.

• Shortly thereafter I began to inform friends and family about my condition by sending periodic e-mail “status reports” to them. Certainly, my main intent was to keep others appraised of a significant event in my life. In no time at all I came to realize that writing the e-mails was primarily helpful for me.  It allowed me to integrate my reactions and emotions to having been diagnosed with cancer. Writing helped me objectify cancer’s various implications. Articulating how I felt helped me deal with the fearsome unknown about the chemotherapeutic process I was to undergo.

I’ve converted my earliest e-mails to this blog format which is slightly easier for me to maintain from here on.

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For those of my friends unfamiliar with “blogs”, please note that the current month’s postings are on this “front page” of the blog (and they are arranged in descending chronological order, with the most recent at the top, and earlier postings lower down on the page).  Earlier postings can be accessed by clicking on any highlighted date in the “Calendar of Posts” or from the “Archives” by clicking on a particular month.  The “Tags” cloud is a distribution of topics that are mentioned throughout these posts, with more frequently used terms becoming progressively larger in size as frequency of mention increases. By clicking on a tag term, you should see displayed all those posts in which a tag term is mentioned.

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