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Collateral Damage – Infusion 10/12

03 Tuesday Jan 2012

Posted by Czet in Uncategorized

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collateral damage, competitive opinions, conundrum, decision-making, decisions, dreams, hesitation, insufficient knowledge, trust

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 2/12—”What, Me Worry?”

14 Wednesday Sep 2011

Posted by Czet in Uncategorized

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accidents, Alfred E. Neuman, amputation, Anastasia, apprehension, ArtsWithin, Civil War surgery, conundra, conundrum, corroboration, ego, embarrassment, epilepsy, fear, fright, helplessness, humiliation, ignorance, infusion room, Losing Control, lost, machismo, medieval cities, nanotechnology, nurses, overdose, pain, papyrus, petit mal, tuburous sclerosis

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)

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