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Decision-Making in the Absence of Certainty – Infusion 10/12

09 poniedziałek sty 2012

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Dear Friends,

Summary

I learned last Wednesday that the 8th cycle of chemotherapy was typically the point at which the highest tolerable concentration of chemicals (er, medications) had been pumped into my body. Subsequent infusions were predicted to be accompanied by increasingly severe side effects. In fact, I’d experienced increasing discomfort resulting from the effects of the chemotherapy since the 8th cycle. I’d also suffered a rapid drop in weight, given the fact that solid foods were not only distasteful but were, in fact, disgusting. For that reason, alone, I could not stomach much beyond hi-protein packaged milkshakes and other liquids.

Monica had driven me to the Infusion Center last Wednesday, since she was “enjoying” her well-deserved week off for the Winter Holidays. Once there, we found ourselves in deep consultation with our specialists and nurses, and eventually concluded that we should terminate treatment on account of my condition, weight loss and distress.

I believe the decision to rank among the most difficult in my life. Following are some of its component parts.

Detail

Undeniably, I have a quirky way of dealing with decision-making. I believe my approach represents what other patients must confront (though I’ll readily admit they might not articulate it in the same way as I do). Following is the context of my thinking-process in reaching my decision. It is complex, as a decision concerning health-care should be.

The process is complicated because it necessarily (I believe) involves several “layers” or spectra. Each spectrum is a continuum along which can be found my current attitude or position. There’s not too much I can do to alter a given position… It is, as it is, at the time of my thinking about it. Each spectrum reminds me of a balance pole that tightrope walkers frequently use to maintain their balance on a tightrope. If the balance pole is out of balance, it makes more adventurous (and perilous) the traverse the tightrope walker makes from “point A” to “point B”.  If, however, the balance pole is well-balanced, it can act as a principal component in successfully executing the traverse.

Complicating decision-making in the absence of certainty is the fact that the tightrope walker (in this case, me) is compelled to handle multiple different balance poles simultaneously (unlike professional tightrope walkers who balance one at a time).

Among the discrete spectral balance poles I considered as part of my decision-making are the following. They can be expressed (with no particular hierarchy in mind) in tabular form:

Psychological
This is an unavoidable attitude towards my cancer that is part of the way I approach life. I tend to be stoic about anything painful. Most of the time, I try to ignore pain until it goes away. Yet, to my mind, my attitude is reasonably realistic. I don’t carry my stoicism to extremes. While my “stoicism” balance pole is likely to be a bit off-center (since I generally understate and underestimate conditions that are painful or even harmful to me), it is not so badly skewed as to threaten the carefullness of my decision-making.

Risk
An obviously important concern is whether or not a cessation of treatment will expose me to greater risk of future recurrance of my cancer (or of another type as has been reported in the literature, at least some cases).  Expert advisors are mixed in their opinion. One of the reasons I signed up for the Clinical Trial was my eagerness to participate in gathering data about divergent hypotheses. The problem, in the present instance, is that the data will not prove conclusive until many years into the future and therefore does not help me very much in making a decision today.

Given concern about my reactions after the 8th cycle, Monica and I were swayed by the fact that we had passed the 6th infusion (a point at which some doctors believe that the toxins have exerted their greatest effect on ridding my body of its existing cancerous cells). Though it appeared I could not endure the entire alternative protocol, I’d passed well beyond the mid-point of the extended protocol.  This appeared to us as a kind of middle point between justified riskiness and danger from overexposure to the toxins.

Collateral Damage
Neuropathy has been often described as possibly irreversable, even after treatment ceases.  After my 8th cycle of infusions, I experienced a decidedly sharp increase in neuropathic feelings in my fingers, toes, eyesight, taste and vocal cords. The effect on my physical extremities (particularly, feet) had even noticeably affected my balance. While none of the symptoms rose to the level of “life-endangering”, collectively, they were alarming; especially as I considered whether the neuropathy would persist long into the future. There appeared to exist no crystal ball from which I could glean an answer.

Quality of Life
Considering quality of life includes a present component as well as a future consideration, and is related to the above. How do I feel now? How might I feel if I continued infusing myself with caustic chemicals? My present condition has been debilitating in the sense that my ennui and lack of energy has turned me into a Rip Van Winkel-like couch potato. This is not a condition I enjoy. Nor is it one in which I can take pride. Akin to my problems maintaining a nutritional diet, it has been quite surprisingly difficult to overcome these maladies merely through will-power. This unexpected realization had an impact on my decision-making, to be sure.

Additionally, I counted the observations made by my family members. These suggested that my downturn was not imaginary. Their more objective—albeit to a degree, self-serving—observation identified a degraded version of their husband and father.  Their observations (which I must trust) had a significant impact on my own judgement about my reaction to the toxicisity of my treatment and the ultimate conclusion that I should cease treatment at this point, and continue on this road in a watchful manner, along with my oncologist and general practitioner.

Consultative
I am intensely aware (and have become moreso as this process has evolved) of my ignorance of the complex details and intricacies involved in cancer research, evaluation and treatment.  Countering such ignorance is what medical schools are for. I have not matriculated in one. That being a given, I consider myself to be reasonably well-read for a non-professional. I take my consultations with my oncologist as highly important and informative augmentations to my own research. Her advice is not to be overriden or ignored at a whim.

Nonetheless, I judge that there is a considerable ambivalance within the medical community, at large, about the current extended protocol of treatment. No one is able to tell me that ceasing treatment after ¾ of the maximum protocol of chemotherapeutic infusions is seriously risky. No one can assure me that holding out for 3 more (with the considerations listed above) is essential to success or empty of danger. No one can tell me that it is certain that 6 cycles, alone, will be sufficient to obliterate my cancer or insufficient to accomplish that aim.

Condition
It is part of my personality to conclude that my side effects are “not as bad” as they could be. But this personal inclination may minimize the fact that—for me—they ARE, in fact, bad. For a balanced view of this particular continuum, I must rely to a great extent on those who observe me, as from a distance. They generally feel that my condition is alarming enough that I should not ignore their desire that I (at least temporarily) cease treatment.

In consideration of all these individual spectra, I felt I had a reasonably balanced perspective. I felt I’d given an sufficiently fullsome consideration to the various influences on a decision that included no certainty about most of its aspects. One thing is obvious: this is not the end of the road, merely a stage stop along the way. The nurses predict that it will take 4-6 weeks for me to rid myself of the toxic effects of the treatment I’ve, thus far, received. I feel I’m slowly recovering strength… but its an amazingly slow process to me.  I’ll need to work on the virtue of patience in my life!

As I left the Infusion Clinic—and despite all the welcome and expert advice I’d been given— I found that all the balance poles in my hands had jammed the doorway, impeding my exit.  Can anyone help me?  Anyone?  No one?  Hello?

 

Chet

Collateral Damage – Infusion 10/12

03 wtorek sty 2012

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Dear Friends,

Summary

Recently, I’ve been bothered by a series of dreams that include what I would call “gratuitous violence.”

I’ve had my share of the types of dreams one knows to expect from reading, even pop literature, regarding Freud’s suggestions about the significance of dreams. The ones about falling have not been in my recent repertoire. But I recall that a prominent feature of my falling dreams was their curious lack of detail. What seemed to be most important was getting to the point: the top of the staircase, or the narrow ledge atop a vertiginous skyscraper. Then, the awful, terrifying fall.

My favorite dreams are what I call my gliding dreams. These are typically preceded, in real life, by a ceremonial dinner, reception, or evening lecture at which I have had “one too many”, or “just one last nip.” After returning home and lying down on my bed (dressed for bed or not) I dreamily imagine myself atop a slight rise. The landscape before me is inexplicably British… (perhaps it is Scottish, the land of my birth, where my childhood memories were formed?) In my gliding dreams I need only take a few running steps, spread my arms, and I am aloft, gliding down the rise. My gliding is gravity-bound, though. I cannot overcome gravitational pull like a bird can. With every forward distance I glide, I descend closer to the ground. The lovely thing is that I find I can launch myself into another very pleasant glide by anticipating touching down, just in time to get my feet under me and kick off for another. As my dream goes on, I learn to perfect my timing, and proceed to learn how to change direction using my body weight and intentionality to swoop, corner, catch an updraft. From then on, I simply revel and marvel enjoyably at my newfound skill until REM takes over. The morning is not always as pleasant.

The dreams I’m having now are nothing like the recounted variety. They are astonishingly detailed.

For example, last night I dreamt that I had been called, mysteriously, to help a Stanford professor I had come to know long ago when I worked at Stanford University Press. I didn’t recognize this person in my dream, but I “knew” the rudiments of his biography. I also knew he was in some kind of trouble. I had been summoned when he was in some desperation; for what reason, I knew not. I’d driven down the Coast to the remote township where he lived with his wife. I noted that it was a long commute for him to the Stanford campus. His house was on a lovely tree-lined street. The trees were tall, large and overgrown. His house was one of three in a row on his block, three-storied and built in a kind of ’50’s interpretation of Tudor architecture. It was quite clear that some early developer had purchased these three lots and had built three imposing and very attractive residences at the same time. [Notice all the details, as compared with my falling dreams.]

My friends lived in the middle home. As I ascended the stairs to the front door of their home (having, for some odd reason, chosen to park my car two blocks back, adjacent to a sandy wind-swept vacant lot),  I could see through the glass doors what I already knew and anticipated. The front doors opened onto a spacious open area, an atrium that was topped, three stories above, with a fretted glass dome. My hosts had turned this space into a kind of informal food court. To earn some extra money in their retirement, the professor’s wife prepared a lunch, Mondays through Fridays. The typical partakers of the lunches were the groundskeepers of the neighborhood: immigrant gardeners and landscapers who kept the whole neighborhood attractive.

So far, so good.

But then my friends told me of a horrifying event that had occurred recently. I could envision it in gory detail in my dream.

A stereotypical vicious gang leader had come to the home two or three week’s earlier, desiring to rent the space “for a party” on a Saturday. My friends explained that they kept the weekends to themselves and did not serve lunches on Saturdays. But the thug was threateningly insistent. So they reluctantly agreed.

Maybe I was there; maybe I visualized it. On the fateful Saturday the place was filled with the normal clientele who had been invited for a free celebratory meal. In either case my dream was vivid and uncomfortably graphic. Just after beginning the meal, the thugs arrived. They encircled the seated guests.  What  followed was a systematic, slow, and detailed assault by the thugs against the innocent (whom the thugs wanted out of the township for some unclearly stated reason.) The thugs attacked and maimed the terrorized guests, one by one, in a melee I had to endure in startled and helpless tearful frustration until I awakened.

This, I take it, is where Monica and I find ourselves at this stage of my recovery.

Detail

I don’t like to admit it, but it’s true that after my latest cycle of chemotherapy there are times I’m a little “out of it.” So here’s a brief review of what I think I know. (I believe at least some of my nurse caregivers read this blog, If my memory has failed me, I trust I’ll be corrected this coming Wednesday, when I report for cycle 10 of 12.)

  1. The standard protocol for my treatment involves a cycle of 12 bi-weekly infusions followed by regularly-scheduled follow-up appointments with my oncologist, frequent blood analyses, annual colonoscopies and scheduled CT-scans to see whether there is any evidence of a relapse of my cancer.
  2. The difficulty, here, is that there’s no way to evaluate the efficacy of my treatment, except to watch and “keep a sharp eye” for evidence of recurrence. One of the blood tests is designed to identify cell “markers” that sometimes signify the presence of tumors. But the blood tests I took before my colonoscopy never evidenced the presence of such markers even though the presence of a tumor started this whole process. So this convenient test would probably not work in my case.
  3. Waiting to see if there is any recurrence years forward, doesn’t help us in our present situation.
  4. Meanwhile, a growing number of oncological specialists had hypothesized, from their clinical observations, that a reduced cycle of 6 bi-weekly infusions might be a sufficiently efficacious treatment against my type of cancer. If so, it would prove less costly, would stretch the chemo inventory to a greater number of patients, and would be less traumatic for those undergoing treatment. Naturally, I signed up for the Clinical Trial these specialists designed to gather data about whether their suspicions are correct. The data would be derived from patients like me, from all across the nation, some randomized for a cycle of 6 chemotherapeutic treatments (half the normal course … Scary; and half the standard course [into which I’ve been randomized], initially, seemingly more conservative and wise.)
  5. As an additional component of the clinical trial, I have also been prescribed an oral chemo pill, which I (along with the other volunteers) will take, daily, now, and several years into the future. This is also a blind test. Half of us, volunteers, are receiving the medication. The other half are receiving a placebo. (What is interesting to me is that the tablets are delivered directly from the Cancer Institute’s Pharmacy Center.  Even my oncologist doesn’t know whether I am receiving the drug or the placebo. This keeps her reactions to my condition objective. The procedure is designed to assures that her observation and evaluation are not cluttered by any bias she may have concerning the drug.)

From my description of the Clinical Trial (the results of which will not be able to be compiled and evaluated for a decade or more, when statistics of remission or recurrence of cancer among the study group can be added to the data on comparative treatments) one can see why some parts of the process against cancer is inescapably slow. Apart from research, some clinical evidence can only be carefully accumulated over a span of years; often a decade or more.

 On the treatment side, First-World approaches are only recently weaning themselves of the pervasive “more is better” attitude.

 “More is better”, “bigger is better” pervades our social psyche in the United States. Part of the reason is our litigious society, where doctors and hospitals must wisely seek to protect themselves against any accusation that they might have under-treated serious illnesses. But another cause might be the inexplicable testosterone-rich aggressive hostility that today seems to drive our response to any conflict of opinion. All around us we find reinforced the idea that “if you don’t agree, hunker down and fight!” This, I know, is a radical accusation. I will be pleased to be disabused of this notion. But in support of the accusation let me just cite a few things I learned from commercial television I watched over the past few weeks.

  1. “Shock and Awe” was our approach to unseating Saddam Hussein. “Shock and Awe” inflicted “collateral damage” among millions of terrified innocent Iraqi families, hundreds of thousands of whom have experienced not only family tragedies through the unjustified deaths of loved ones, but have suffered summary displacement from their homes and neighborhoods. The return of these families to normal life will easily take the next three or four generations. The social fabric—however fragile it may have been under tyrannical totalitarianism—was rent and discarded as “collateral damage” in the name of extending the hand of peace.
  2. Just this week, a fifth completely innocent child was murdered within 100-miles of where we live when a totally unsuspecting 5-year old was shot to death by a drive-by assailant. Perhaps the murderer was engaged in a joy ride with his date for the evening. There seems to be no other explanation.
  3. Over a million (!!) handguns and rifles have entered the public domain over the holidays. A proportion of those firearms will doubtless inflict collateral damage of their own on our society.
  4. We have maimed tens of thousands of our volunteer military forces who’ve been injured, both physically and mentally, in the aggressions we’ve pursued as a nation. We’ve trained youthful and impressionable men and women in violent techniques by which to impose our will. One witness to the sometime effects of this is the demented and highly armed man who was terrorizing and wantonly killing people in Mt Rainier National Park.  Collateral damage.

 The question before Monica and me is also about collateral damage.

If my treatment has been truly effective as of the 6th cycle, what collateral damage is taking place in my body? Logically the poisons, if they have obliterated their primary cancerous target, are now inflicting (perhaps irremediably?) damage to innocent cells? Evidence suggests that—while damage might indeed be taking place—the body is resilient enough to restore the damage after the treatment is over and the toxins are leached out of the body through metabolic and other unknown processes. But uncertainties abound.

I trust my caregiving advisors implicitly for three reasons, the predominant being “I have to.” The other two are far more significant. (1) I believe in and admire their education and dedication to master medical complexity. (2) I believe in the communal goodness of individuals whose constant and reliable instinct is to do good.

Still… How to know? When to know? How to decide?

 At this point in my treatment, Monica and I view, differently, our responsibility to care for our God-given body to the best of our last breath.  And, trusting her always-sound instincts, I don’t know if my point of view is superior to hers.

 I view my discomforts (I resist labeling my side effects as “suffering”) relatively lightly. Compared with the many people in this world who truly suffer (and with no visible end point in sight as I have), my discomforts are minimal.

Monica, observing my condition “close-up”, judges that the collateral effects of my chemo—especially in the light of the designer’s of the clinical trial, who believe a shorter (by half) treatment protocol may be sufficient—are more dangerous than continuing with to the last three cycles of treatment. She fears the “collateral damage.”

Have I explained the quandary clearly enough? It’s an emotional mix of trust, hesitation, judgement, advice, insufficient knowledge, hopefullness, and, of course, fear and uncertainty. In combination, this stew is disabling. We must get past it (and I’m sure we will.) One way, of course, is to turn the conundrum over to a higher power as a kind of sacrifice. But I’ve always been amused by the story of the man stranded on the roof of his house during a flood. After several days and nights in this precarious and dangerous position, he appealed to God. “God, why don’t you save me from this perilous situation?” God answered, somewhat testily, “I sent you a floating log. I sent you a sturdy floating branch. I even sent you an empty canoe that skirted near your home. But I made you a human. I won’t transport you to dry land. I expect you to show the initiative needed to take advantage of the natural ways by which you can be saved!”

Given our present experience, I can only deduce that every patient of a life-threatening illness undergoes a similar crisis. I sympathize completely; and regret that, so many times, I was simply unaware of such serious conundrums faced by friends and associates.

Little wonder that instead of enjoying my gliding dreams, I’m stuck watching the dream channel that hosts the gratuitous violence episodes.

 

Chet

Chemo Infusion 3/12—Life vs. Death

28 środa wrz 2011

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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