Thanksgiving reflection – learning to be thankful for cancer

Summary

In my last blog post I was surprised to recall my Dad’s constant reminder, “Nie daj się!” (Never surrender yourself!) I sought to discover what he really meant. Today, on the distinctly American holiday of Thanksgiving, I wondered if I could approach the Thanksgiving table ready to express thanksgiving, even for my cancer! It has, perforce, captured my, and my family’s, worried attention. But maybe there are ways in which it can be a catalyst for some understandings I might otherwise never have sufficient motivation to explore.

Detail

Step into any Catholic Church anywhere in the world. Look around and you will soon find (usually arranged around the perimeter of the nave) a series of 14 illustrated or carved images representing the last hours of Jesus’ passion and crucifixion. These images are used year-round for private meditation, the goal of which is to deepen one’s awareness of the unutterable suffering and agony of Jesus’ passion and death, and—simultaneously—to raise consciousness of one’s own personal sinfulness and subsequent participation in Jesus’ passion. (Sin, in this context, might be defined as an unthinking separation from God and my community. In place of these essential relationships, sin adopts the illusory centrality of my self, what most pleases me, and what most closely conforms to the idea of “on my terms.”)

During the last days of Lent—during what is called “Holy Week”—the “Stations of the Cross”, as they are called, become part of the Church’s public liturgy.

Clearly, this is serious spiritual fare. Yet meditations of this kind lead to, and are components of the central run-up to the great feast of Easter, the most important feastday of the Church calendar. Even for those who disdain spiritual or religious belief, the effort to come to terms with suffering is certainly beneficial. It can result in a deeper understanding of the role of suffering in our person, in nature, and in the world. Suffering, after all, is something with which each of us has intimate experience.

Contemporary Western society finds little value in suffering. In fact, avoiding suffering has become a cultural priority. I might be out-of-bounds to assert that everyone can and should welcome suffering. But it is not impertinent to suggest that for those who may be ready to confront their suffering head-on in spiritual meditation, doing so could prove valuable. The Stations of the Cross can act as a good catalyst… so can be something like a chronic life-threatening disease. Seen in this manner, I could be grateful for anything—even my illness—if it helped me understand who I am and how I want to live.


There’s a virtue to which we are taught to aspire. It is empathy. True empathy is hard to attain. It is too easy to slip into pity or disinterested observation, as if simply observing someone in distress and recognizing their pain is empathy. It is not.

Throughout my experience of cancer, I have been forced to come to terms with my vulnerability, dependence and embarrassment. For me, these have been serious obstacles to reconciling myself to the presence of cancer in my body. (This entirely self-centered reaction is precisely a manifestation of the sinfulness to which I earlier alluded.)

If—with an opposite outward-directed perspective—I observe the attentiveness of Monica and my children to me, in my “fallen condition”, I begin to see why empathy is a virtuous goal.

Let me use a couple of uncomfortable but decidedly real examples.

I don’t know if there is any connection at all with chemo and my olfactory sense. Both in Round One, several halcyon years ago, or this Round Two, that I’ve just begun, my sense of smell seems to have been aroused and heightened. Mainly, what I smell, I don’t like. The predominant offensive smell is, alas, me. I’m embarrassed by it. It is strange that I—who, after all, am intimately acquainted with my own familiar (and, to me, comfortingly pleasant) odors—no longer recognize myself in my normal odors. No doubt this is caused by my body as it naturally metabolizes my chemotherapeutic agents and rids itself of the toxic chemicals pumped into me over a length of hours and even days. Even my excretions contain their chemical smell. My breath and exhalations are different and unpleasant to me. Even my sweat smells odd. I hope no one else notices, but I can’t help believing that they, too, are offended.

I am also experiencing what Monica and I have come to call “Sporadic Wonkiness”. The worst of it is, Sporadic Wonkiness assails me from an unknown etiology. I cannot tell what it is, much less what is causing it. In practical terms, out of the blue, I feel myself being out of breath… but not really, because I am breathing in deeply and exhaling normally. Yet I feel an overall physical weakness, as if my breath is providing its essential oxygenation exclusively to my lungs and no further. The experience is often accompanied by a slight dizziness, even a distortion of my sight. I feel as if I might faint.

So far, the wonkiness has always passed, and I’ve returned to “normal”. But it doesn’t help, psychologically at least, that—just weeks ago—a dear friend/priest/art historian/professor in our parish had just begun his own protocol of chemotherapy. A couple months ago, he was driven home from his Clinic. While walking towards his room, he reportedly turned to his friend who had driven him from his hospital appointment, and said, “Gosh. I can’t seem to catch my breath.” Immediately thereafter, he quietly collapsed and died on the spot. I can’t help wondering if—just as unexpectedly—I, too, might leave this life in the same sudden manner.

“Sporadic Wonkiness” is undeniably frightening. It also frightens those, especially Monica, who observe me when I’m under the thrall of “wonkiness”.

I am dutifully reporting these symptoms both to my oncologist and my cardiologist in the hope they can discern a treatable condition of some kind that can be understood and amoeliorated. My reports are not enough for my wife and daughter.

Throughout this journey, Monica has steadfastly and generously tolerated and cheerfully accommodated herself to my odd culinary preferences, weird schedule, strangely unfamiliar—even to her—smells, and my occasional odd mood swings. But she has also actively participated in applying all her skills and ministrations—physical, psychological and spiritual—to assist me. Importantly, as she has added my special care to her activities, Monica has not allowed my care to displace her own social and professional commitments. This—particularly the latter, I think—is comforting to me.

Similarly, Krysia is not satisfied with what she sometimes considers my over-subtle reports to my doctors. Krysia confidently barges right in—as the capable advocate she is—writing or calling my doctors to say things like “You know those symptoms my Dad discussed with you? Don’t be fooled by his demeanor. They are not merely ‘occasional nuisances’. From my perspective, they are dangerously detrimental. Here’s what I know that he may not have communicated strongly enough. What should we be watching for? What else can we do to help you aggressively care for him?”

Such active involvement signals, to me, the expression of empathy. Empathy is not merely sympathetic observation, but a “living together with” someone in trouble or in pain, contributing when possible whatever may be truly helpful. A critical component of empathy is to avoid crossing the line by which the empathizer “loses themselves” in solving another’s difficulty. Such self-destructiveness is another by-product of sinfulness, one by which we proudly believe exclusively in personal power and claim we can alone accomplish more than is ever possible. Such self-aggrandizement is destined for failure. Scripture records that Jesus, himself, was tempted to believe in his complete and sufficient independence from his Father.

Having someone simply share a burden of illness is more than enough. It provides dignity to both the giver and receiver of empathetic ministrations.

Achieving true empathy is definitely a difficult balance. Being surrounded by empathetic caregivers is something for which I can be truly thankful on this Thanksgiving holiday… and every day.


Can I, in my turn and condition, develop empathy, myself? Here’s a difficult case.

At the very moment of this writing, innocent individuals and families in the cities of Mosul and Aleppo are suffering grievous murderous hostilities over which they have no control. They are victims of their condition in some real way not dissimilar to mine in relation to my cancer. Can my cancer help me empathize with those individuals?

I think the answer is “Yes”. But it takes some reflection to tease out “How?” And it will take humility if I cannot discern any empathetic physical action I can contribute.

The news media gives us sensational sound bytes. The reports of what alone is happening (much less attempting to explain why they are happening) are clearly disconcerting but altogether momentary, squeezed in, as news stories are, between advertising commercials for the newest car and the most attractive Black Friday sale items. Not a bit of empathy, understanding or helpful interpretation is to be found on TV or radio in such reports.

Instead, I can focus my attention on a nameless but personalized individual in his situation in an Aleppo neighborhood. I recognize that the man is exhausted with worry and fear just like I am… Really?…

My worry and fear is shared with my medical caregivers, family and friends. He has lost most of his family to bombardment in the past week and has not even been able to accord them the dignity of a burial. He is surrounded by people, all of whom are traumatized, as is he. There are abundant causes of his distress.

I have the luxury of distracting myself from my fears by contemplating and articulating my observations for myself and for those others who may be interested. He has no place for contemplation. Half his house has been ripped apart. His precious personal and family belongings are scattered in the rubble of what used to be the street where he lived.

If my “Sporadic Wonkiness” ultimately disables me, I am confident someone will call for an ambulance to take me to the closest ER where competent attention will be administered. He can be certain that no such attention will be available to him. Even were he to painfully strain his back or suffer a broken limb, there is no hospital or urgent care center in his neighborhood, much less pain-relieving medications; nothing more potent than the few aspirin tablets he discovers, unaccountably, in his pocket.

Worse still, my, by now, friend, hovers helplessly over his wife, who is wracked in pain from a deep gash in her ankle. He looks toward his granddaughter, trembling in the doorway; a horror-stricken look in her blankly-staring eyes. No mirth. No playfulness. No innocent childhood is being imprinted in her dear memory. He, who has been their reliable protector and provider, realizes he is helpless to offer any assistance whatsoever to either of his most beloved.

The realities of this one man’s life bring tears to my eyes. I am crying not only for the pain of his situation, but for my selfishness in ever thinking my own worries and fears were so vainly important to me.

I cannot do anything to physically help my fellow human in need. Like Job, I cannot even comprehend any rationale or fathom any explanation to account for why he is being tormented so. But there exists a real, though ephemeral, link between the man in Aleppo and myself.

Scientists are discovering similar linkages all around us, in nature. In the midwest there exists a massive mycological network in which individual fungi operate so collaboratively that scientists prefer to call the hugely extensive assembly a single organism. There is evidence of a kind of altruism that can take place among individual trees in a forest where the healthiest trees contribute some of their energy, through their root systems, to weaker trees. Whales participate in their community through audible signals that, reportedly, travel across the widths and breadths of oceans in order to keep the community in touch with one another.

The Dominican Sisters at my grammar school knew what to teach their young charges on this subject. They suggested it was possible—since we were all members of one spiritual body—to consciously “offer up” our (puny) discomforts. It was lasting advice. I can offer my discomforts as expiation for my shortcoming, and pray that—however valuable it may be to offer up my sufferings for this man—I do so gladly and intentionally to alleviate his burden. I hope and trust that he will be sustained in his grief and will experience a glimmer of hopefulness from the energy I send his way. Even such an insignificant glimmer of hope may mean his survival. A glimmer may be equivalent to the minutest measurable bit of energy. But it can travel across the globe to reach my friend in Aleppo. That can serve both me and him.

For this man, I can do no more. But neither can I do anything less. He and I are related in the mystery of our creation. I am thankful, today, that it is possible to transform my discomforts into something so precious.


I am receiving an infusion, among others, of a drug called Irinotecan. Irinotecan is unabashedly described in the Fact Sheet given me at the hospital as an “irritant”. It begins its caustic irritation to the inside of my veins the moment it comes in contact with them. Medical staff handle this drug with extreme care. Even though I realize that medical descriptions carefully list and describe each and every potential side effect of a compound being tested for medical implementation (and even if only one person among hundreds of clinical trial patients experience a particular single negative reaction), the list makes daunting reading. It reminds me of some of the darker of Edgar Allen Poe’s literary oeuvre.

What caught my attention was the fact that Irinotecan is a compound comprised exclusively of botanical molecules. Here’s a single paragraph from several pages of description I was given.

Irinotecan belongs to a class of chemotherapy drugs called plant alkaloids. Plant alkaloids are made from plants. The vinca alkaloids are made from the periwinkle plant (catharantus rosea). The taxanes are made from the bark of the Pacific Yew Tree (taxus). The vinca alkaloids and taxanes are also known as antimicrobule agents. The podophyllotoxins are derived from the May apple plant. Camptothecan analogs are derived from the Asian “Happy Tree” (Camptotheca acuminata). Podophyllotoxins and camptothecan analogs are also known as topoisomerase inhibitors. The plant alkaloids are cell-cycle specific. This means they attack the cells during various phases of division [in the process of which, they also raise havoc with (i.e., kill) a lot of my otherwise innocent and mainly-beneficial fast-growing cells].

I’m grateful that someone at Kaiser believed patients should not be “talked down to” and believed that some might be sufficiently interested in reading this decidedly Latinate and professional scientific description.

Reading this paragraph brought to my mind the Brother Cadfael-like horticulturalists and investigators like Gregor Mendel, Carl Linnaeus, countless relied-upon but persecuted “witches” over the ages [especially them], apothecaries, and botanical scientists of various stripes and specialization whose names are unknown to me, but who have advanced the earlier “primitive” work of their forebears. It recalled for me adventurers like Charles Darwin, Joseph Banks, Alexander von Humboldt and so many other intrepid explorers whose precise and carefully-documented and carefully pressed and dried botanical samples populate our great horticultural herbaria across the globe. The early investigations and hypotheses have blossomed [sorry] into current enthusiasm for agricultural diversity, efforts to preserve heirloom plant varieties and the worldwide effort to establish seed banks. It will come as no surprise that, second only to books of prayer, the meticulously and beautifully illustrated horticultural albums are the most treasured of “rare books”. They are still consulted today.

I sometimes wonder if the Angel Gabriel didn’t show considerable mercy when banishing Adam and Eve from the Garden of Eden. Yes, the angel knew the errant couple and their offspring would be condemned to toil and labor, but Gabriel made certain that all the cures, devices and sensitivities Adam and Eve’s progeny would need for survival and prosperity were to be found scattered around them in plain sight. Thenceforward humankind needed only to look, study and discover the answers to their needs. Doing so, of course, depends upon humankind’s (and my own) attitude of respect, careful preservation, and responsible attention to the natural habitat in which we live. Gabriel was highly respectful of human capabilities. That optimistic opinion forms a challenge to which we continue to aspire.

On this Thanksgiving day I can be—and am—grateful for the mysterious operation of plants in my life, both in their contribution to my nourishment and in their particular contribution to combatting my cancer-cells-gone-amok. Added to my appreciation for plants, specifically, I can add thanks for the individual contribution of dedicated and persistent individuals across time who have pursued their insights and experience. They intuited that plants possessed secrets that could eventually defeat debilitating diseases like mine. Finally, I am grateful for the pharmacists, nurses, and medical practitioners who dare risk exposure to these toxic compounds to corral them for my individual needs.


Can I be thankful for my cancer as I approach the Thanksgiving table today?  At this point in my journey with cancer, I can profess a hopeful “Yes”.  I can’t be certain that I will be able so to claim as time (and my cancer) progresses. I admit to worrying about how I will manage to deal with the ultimate debilitating effects of the disease. But I hope that contemplating it, now; learning about it (to the extent I am able); and discovering and training my own reactions to conform to an ideal about which I’m learning, will serve me to maintain balance into the future. I pray for the grace to incorporate into my interior life what I’m learning about suffering.

I realize I am graced in countless ways. I realize I am not a victim. I know that suffering has much to teach me. I am not alone and am immensely grateful for family, caregivers, friends and to all those who pray for me because they know and care for me.

 

All these make me feel unreservedly thankful. Happy Thanksgiving!

 

Chet

“Nie daj się!” – a linguistic digression

Summary

I’m oddly “out of synch” with my body this session of my chemo infusion. I’m experiencing a variety of physical effects but can’t relate them to specific causes. I feel my body reacting but I don’t know what, precisely, it is reacting to (aside from the “generic cause”: chemo). Rather than let this incongruity take me hostage, I’m choosing instead to occupy my mind in a mental linguistic exploration. Though I’m no linguist it seems to me likely that such a digression will be more interesting than submitting to an inchoate anxiety creeping over me.

Here’s the subject of my digression. It’s about a frequently-repeated injunction of my Father’s. I don’t wish to paint him as an exclusively forward-thinking child-psychologist, but I remember my Dad’s correcting/guiding me throughout childhood and adolescence by what were mainly positive statements (something that would meet with the approval, I daresay, of today’s expert psychologists). Following are a couple examples:

(1) I would complain, “I can’t figure out this homework!”

My Dad would look over and say, cheerfully, “Of course, we can!” Let’s look at the problem. ‘Locomotive A’ leaves the station at 12:07 and reaches a speed of 85mph. ‘Locomotive B’ leaves an opposite station at 03:12…..  …What do we know about these locomotives?  What do we know about their speed?  How long is the trip….?” Eventually “we” worked out the problem of where, along the track, both trains passed each other.

Deducing the correct mathematical answer had never been been my Dad’s primary objective. The underlying lesson my Dad wanted to convey was a deeper life lesson: i.e., that it most certainly was possible for me to “figure it out”; any problem; any time; simply by applying the God-given mental tools I already possessed… myself.

(2) I was often invited to tag along with my Dad when—in the evenings after supper—he went off to his second job, a machine shop he had established with a friend. (Looking back, I realize that my Dad was providing my Mom with a substantial gift: getting me out her hair so she could have an evening of quiet with my younger Sister). But that’s another matter.

At my Dad’s Machine Shop, I might be set to work on a drill press. I’d complain, “I can’t drill a hole in this steel plate!”

My Dad would reply, “Of course you can. It’s easy if you let the drill do the work of cutting into the plate. If you pull on the handle, trying to force it, you’ll…”  SNAP!…  “Hmmm”, he’d observe, “It sounds as if you may have been pulling on the handle too hard. The drill bit has snapped.  Let me show you how to replace a broken drill bit on a drill press…”

Life lessons are beneficial and important. I have remembered the lesson, of “Yes, I can!” all my life, even though I’ve long ago forgotten, for example, how to solve quadratic equations. (Today I now know where I can quickly find out how to solve them, should I ever find myself needing to do so.)

The one statement of encouragement my Dad used, that might be considered negative, at least grammatically, was a phrase he regularly repeated to me, in all kinds of circumstances. It was the admonition, “Nie daj się!

I understood it colloquially at the time. “Nie daj się” translates to “Don’t give up!” or “Don’t give in!” Today I know from experience that translations are never exact. “Don’t give up!” is not precise. Neither is “Don’t give in!”

While noticing this imprecision, I couldn’t help realizing that the operative verb, daj is a surprising word. It is reliably translated to give… as if “giving” was somehow related to “surrender” or “capitulation”. In addition, the English left implicit, what the Polish makes explicit: the subject of the action. In English, the subject is understood, as in “Don’t [you] give up.” In Polish it is explicit: “Don’t give up yourself.”

All this made me curious. What did my Dad mean to convey? What did it really mean?

Detail

To give up (or to use its synonym “to capitulate”) carries a notion of self-defeat. In the specific context of my cancer, to “give up” would mean I had lost my will to participate in overcoming what is a lethal danger to my life. It means that I acknowledge the overwhelming superiority of my adversary, cancer, and that I have admitted the futility of continuing to defend myself against my illness.

I forget precisely where we first heard the distinction made, but Monica and I have spoken of the transition of nomenclature in the case of my cancer. Once, in our lifetimes, my cancer was described as a “terminal illness.” Today, it is more frequently described as a “chronic disease.” To “give up” confronting a terminal illness can be viewed as “coming to terms with reality”. Whereas to choose no longer to fight against merely a chronic disease is surely to surrender oneself to a tragic and sorrowful defeatism.

To give in (or to use another synonym, “to surrender”) puts the emphasis on the aggressor. In the present context, my cancer would be viewed as having completely dominated our confrontation, and that I have concluded there is no use pursuing the battle. “Giving in” acknowledges my cancer’s inherent power over me. The phrase reveals that I have actually empowered my illness and—at the same time—have diminished myself.

These two interpretations of Nie daj się (“to give up” and “to give in”) may alone be sufficient justification for my Dad to have constantly advised me to avoid either. But, translated in this way, either of these interpretations reduces his admonition to a mere rallying battle cry. Neither of these translations tackle the mystery of the word  daj, “to give”. Neither interpretation addresses what the Polish makes the explicit subject of the admonition się, (which translates as “yourself”). Left implicit, in English, the subject of the admonition is left ambiguous “don’t [you] give up”. Made explicit, in Polish, the admonition is personal and much more significant in two ways.

Nie daj się makes no doubt that what my Dad was emphasizing was my fundamental integrity. (Not [you] implied; but “yourself” specifically.) My Dad had served with distinction in the Second World War. He knew there were times when it was strategic and life-saving to admit to the superiority of the enemy in a given battle. It was tactical to be realistic about one’s dwindling resources and futile to fight from a particular position, when retreating and losing a single position in order to bolster another, might improve the overall chances of “winning the war”.

Parrying, withdrawing, bolstering, joining the battle from another vantage. Those were permitted. What was never permitted was to surrender myself, my inner integrity.

Nie daj się was the one admonition of my Dad’s that I recall him repeating often. He wanted to underscore that I myself was the subject of his admonition because I myself as the subject explains the deeper implication of the verb, daj,“to give.

Giving requires an active subject. “Don’t [you] give up” or “Don’t [you] give in” neutralizes and ambiguates the subject. In turn, it objectifies the action. The admonition is understood as addressing an activity like surrendering, capitulating or losing. When the subject is made explicit, it is me, making the decision. The question is reframed as: “When can I surrender?” My Dad’s answer is “Never to the point when it involves placing my integrity in the balance. Never.” Nie daj się! Never surrender your integrity, your own self.

At this point, I must ask my non-Christian readers some forbearance.

The central tenet of Christian faith is Jesus’ gift of salvation. There are several intertwined implications theologians have been careful to explicate. First, the only way Jesus Christ could have given His life in expiation for mankind’s transgressions is if He was a free and unencumbered actor. Jesus must be identical to us, with no spec of the divine in his DNA any different than ours. Third, Jesus must have complete free will to choose to participate in his passion and death. (Today some scientists seek to question free will at all. Such deconstructionist approaches invariably lead to dead ends.)

For Jesus’ sacrifice to be a sufficiently and satisfactorily complete gift, Jesus must do precisely what my Dad’s admonition forbids. He must freely give over His entire and complete Self… but—in Jesus’ case—not to a perceived adversary, but to His life’s only goal: “Father, not my will, but Thy will be done.”

This understanding gives a deeper meaning to my Dad’s injunction. Because it answers the natural human retort to a negative. “Nie daj się? Never? Are there no exceptions at all?” And the answer is revealed to be: “Only when you follow the example Jesus has given us to follow. Only when we can say, with Him, ‘Father, not my will, but Thy will be done.'” If I can do that, my ordeal with cancer can be transformed from an enduring, to a giving. And that makes all the difference.

Blessings,

Chet

 

In a future reflection, I would like to propose answers to some heretical questions that have been rummaging in my head, of late. “Is it possible for me ever to perceive that my cancer is, itself, a gift? Can I ever be sincerely grateful for this gift? What might that mean to me and those around me?

Pettiness

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Summary

Since April 2013, Monica and I knew to expect a recurrence of my cancer. It was a matter of time. We were happy to ignore the eventuality and live our lives in a normal unencumbered way. But the reality was in the back of our minds.

Last week’s recommendation from our oncologist did not come as a complete surprise. Yet, it was, nonetheless, disappointing and disturbing. Monica and I both realized that it would mean a resumption of regular and frequent visits to the hospital, the unpleasant but unavoidable side-effects of the chemotherapeutic drugs, and the diminished energy, reduced mental acuity and physical discomfort that undergoing chemo meant for me. Added to these are the resumed basket of contradictory emotions that we both experience: anxiety, empathy, hopefulness, fear, determination, etc.

Our predominant reaction of the doctor’s evaluation was that of gratitude…  sincere gratitude that there existed a reliable and proven “second round” of chemo to which we could avail ourselves. How fortunate that we live when protocols have been developed over time, adjusted by the experience of previous patients, and made available to me as a known and well-understood treatment. Instead of feeling helpless in the face of our development we have hope that the treatment will be successful in “beating-back” and stemming the unhindered growth of my cancer tumors.

Undeniably, gratitude was what was foremost in my mind as the doctor shared with us her evaluation and reasoning. I was surprised, therefore, in experiencing my first chemo treatment of “Session 2” that I found myself annoyed with petty inconveniences. Why is it that pettiness so often trumps rationality? Why was it so easy to become preoccupied by incidentals and apparently put aside the far more important benefits I would receive?

Detail

This is my schedule:

On a Sunday before my Infusion, I must report to the hospital for lab tests. We already have established a baseline of various components of my body’s chemistry, blood components and counts, cholesterol levels, triglycerides, magnesium and potassium balances, urinalysis, etc.  I only have, to be frank, an embarrassingly vague understanding of how all these components work together, what they indicate, and what my medical caregivers learn from reading the lab reports. But study them, they do. Having established a baseline, they can learn, each time I report for a new infusion, how I am responding to the chemo.

The Monday following the lab tests, I report, early in the morning, to the Infusion Center. I receive a dose of steroids and medications in pill form to counteract the side-effects of the chemo I’m about to receive. Next, the nurse accesses my surgically-implanted port* and connects sterile tubing to it, flushing all the tubes and connections in the process, to make sure there are no obstructions or problems. My port makes it unnecessary for a nurse to implant an intravenous [IV] needle at the top of my hand (a process I distinctly do NOT like). After the tubing is in place, it is carefully secured with a large transparent sterile covering, for it will have to stay sterile and in position for the next 48 hours or more.

Meanwhile, the hospital pharmacy will have delivered my chemotherapeutic drugs. These come double-bagged in the unthinkable event of an accidental puncture. My nurse dresses herself in what I’ll call a “half-hazmat” suit. It differs from a “full hazmat suit” in that there is  no plastic visor covering her face, and lighter weight material is used for the gown. Also, she does not have to wear sterile booties. Apart from those three details, she and her clothing are covered protectively, her hands are protected by sterile gloves and she wears a mask across her nose and mouth.

In a former posting from my first experience with chemotherapy, I expressed shock at the signs that hang in all the bathrooms of the Infusion Clinic. They read: CHEMOTHERAPY PATIENTS – FLUSH TWICE!  This time, it was all these handling precautions that reminded me of the dangerous toxicity of the drugs I was about to receive directly into my heart and thence, pumped throughout my body.

Once everything is ready, the oncology nurse hangs the first of several bags of chemicals on the IV pole and connects them to the tubes going to my implanted port. The “drip” infusion begins. The infusion, itself, is painless. I am being infused with some associated “assistive” chemicals and three chemotherapeutic drugs, one of which (Fluorouracil) I received in my first round of chemo, and two of which (Irinotecan and Avastin) are new to me. The infusion process takes roughly 4 hours, during which I sit in a comfortable chair and read or listen to music.

During this first round, I had a strong reaction to the steroids I received in pill form at the beginning of the morning. Within an hour, I began perspiring furiously, dampening my shorts and my shirt and became decidedly alarmed, given that I’d witnessed the precautions taken in handling the drugs that were coursing into me. My nurse reassured me that I was simply reacting to the steroids. It was “nothing to worry about”. I, however, worried that the moisture would wick up through my khaki trousers making me look as if I was incontinent. I didn’t like the sweaty overheated feeling. I was annoyed that I “was required” to take the steroid pills.

Just before noon, I’d absorbed various bags of the dangerous chemicals. The next step was to replace the connection to the IV pole with a portable pump filled with a supply of the chemo drugs that I would take home with me. The pump is an ingenious device about the size of a fat baby-bottle. It contains an expanded latex or rubber “balloon” filled with chemicals. The pressure of the expanded balloon is enough to continually squeeze the chemicals, within, through the tubes. I would have the pump attached to me for the rest of the afternoon, overnight to Tuesday, all day Tuesday, and overnight to Wednesday. Sometime Wednesday morning, the pump would be empty. I could then go to the hospital to have it removed under sterile conditions.

After that, I’ll have two weeks to recuperate. Then the cycle will repeat: twice monthly for a period of 6 months (i.e. lasting to March/April 2017). Predictably, the chemo will accumulate in my body and predictably, the side-effects will testify to the disruption being caused my tumors. Unfortunately, while the process of beating-back my tumors will be taking place, numerous entirely guiltless but rapidly-growing cells of my body, eg. hair follicles, mouth surfaces, nerve connections, etc. will also succumb to the effects of the chemo. This unintended “collateral damage” is the cause of neuropathy, hair loss, mouth sores, nausea and gastro-intestinal turmoil.

But—cumulative side effects aside—this regimen is certainly “convenient”, especially given the alternatives. I am under the supervision of qualified medical personnel each time I begin an infusion. Proper drugs are available to me. I sit in comfort while each infusion begins, long enough to make sure there are no unforeseen reactions or complications. Having a portable pump gives me a great deal of freedom of movement and flexibility. As I noted, the chemo I’m receiving has been tested, monitored and adjusted for maximum efficacy. And the “assistive” drugs are designed to diminish the worst of the side-effects. There’s everything in this scenario to appreciate and for which to be thankful. I even travel to the Infusion Center, conveniently, by public transportation. It is, perhaps, unwise to drive when under the influence of chemotherapy, especially when the side-effects begin to assert themselves.

I came home Monday afternoon from the Infusion Center, somewhat emotionally tired by the experience and lay down for a nap. It turned out to be impossible because of the effect of the steroids. I was alert all night and dozed off for a maximum of 2 hours, still strangely and unnaturally alert in the morning. Steroids are powerful. Meanwhile, the long night was disconcertingly uncomfortable. I worried that I’d get entangled in the tubes that led from the pump to my port. I worried that I’d turn over and break open the sterile bandage containing the needle that provided direct access to my port. I worried I’d forget about the bottle when I rolled over.  I worried that the pump wouldn’t work properly. I worried myself unnecessarily, but it continued the next day.

In the morning, I was annoyed I couldn’t shower. Then I worried I’d crimped the tubing by tightening the belt holding up my pants. I didn’t like the weight of the pump against the strap around my neck that secured it to my body. I didn’t like the way the pump felt against my chest, so I moved it. I didn’t like how it felt under my arm, so I tried another position.

MAINLY, however, I disliked the fact that I had let myself become preoccupied by petty insignificant inconveniences when I should have been celebrating the opposite: great convenience,  joy in hopefulness, access to caregivers and effective chemicals; that I was under the care of concerned professionals and received their careful ministrations. I am so very blessed.

I don’t intend to exaggerate my preoccupation with pettiness. It’s only that there is such a great disparity between the benefits I am receiving and the petty insignificant nuisances I need to experience, that I am surprised I’d give the nuisances any “standing” to stimulate complaint. Yet, it seems often to be the case that the immediate annoyances of life, however petty, have a surprising power to assert themselves more strongly than rational comprehension and judgement can do.

I suppose this is because the annoyances are closely linked to emotions. The things that annoyed me provoked the side of the brain that works independently of rational and logical thought. They demanded urgent attention, not because there was a rational immediacy to them, but because all the things that bothered me were legitimate dangers. If I tangled the tubes at night, I could possibly dislodge the sterile bandages. If I accidentally crimped the tube, it could interrupt the flow of the drugs. If I didn’t pay attention to where, in physical space, my pump bottle was hanging, I could easily jar or crash into it by accident. So both sides of my brain were clearly working in the face of a dangerous situation.


A friend—on finding out I was undergoing a second round of chemo—asked me, solicitously and hypothetically, what on earth I could have done to deserve my situation. I’ve never thought of it that way. Rather, I’m always conscious that I’ve done nothing, in particular, to DESERVE the wonderful life I’ve been given. Life is a scrabble. And my scrabble has been slight compared to some. No wise person—whether spiritual or secular—has ever suggested that life should be a “walk in the park.” In point of fact, it seems that overcoming challenges and obstacles of life is a way of strengthening one’s character, reinforcing one’s values, and supporting one’s humility and gratitude.

I aspire to maintain a balance throughout the coming 23 more infusion sessions in this “second round” admitting and accepting annoyances and discomforts, but placing them in the context of hopefulness, mercy, gratitude and enormous good fortune. If you would, send a good thought my way that I succeed!

 

Chet

Thoughts on Theatre

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Dear Friends,

Summary

I love the theatre. My love for the theatre may initially have been kindled at the Dom Polski(1) to which my parents frequently dragged me along as a child. My mother played the piano. My Dad built impressive scenery for the amateur stage performances. (Nothing he ever built was as awe-inspiring as the ornate wheeled sleigh that was used at Christmas time. The sleigh was beautiful. It was big enough and sturdy enough to carry Swięty Mikołaj(2) and up to three hefty assistants, were they called for. My Dad’s sleigh would have humbled any of today’s sub-compact automobiles.)

Performing seasonal skits and especially musicals seemed to be particularly important for the Polish immigrants. It gave them a chance to vicariously recall their more carefree past and hopefully give expression to their aspirations for the future. At Easter, women old and young, dressed in make-believe costumed finery strutted on the stage singing “In My Easter Bonnet”, which is something they’d never have sung (or worn) in their war-torn homeland. I recall wondering why such a bright song never failed to bring a tear to their eyes.

Detail

Go ahead. Invite me to a Stage Play, Reading, Puppet Show, Mumenshanz, Kamichibai, Opera, Home Play, Magicians, Balinese Shadow Puppets, Musical, Kabuki, Cabaret, Circus, Operetta, Monologue… and I’m “in.” Judging from the length of this spontaneously-generated list, I must not be alone in responding to the allure of the theatre.

Theatre is often described as that place where one “suspends belief.” I prefer the positive description. Theatre is a place where one chooses to adopt the action of a different time and place and experiences it with the intensity of emotion, empathy and amazement as if one were really present there… wherever “there” might be.

I’m blessed with a vivid and active imagination. One of the things I dislike about books-turned-into-movies is that what is portrayed on the screen is the product of someone else’s imagination. The screen rendition rarely matches up with my own imagination, and seldom lives up to mine.

In an earlier age, its possible I might have been diagnosed as mildly autistic. I found it difficult to focus on one task, alone, because there were so many alternative and interesting things with which to be involved. Perhaps I found the theatre appealing because everything about it facilitates focusing only on what is happening on the stage. That made it a bit easier not to be distracted.

As an actor(3) what I enjoyed most was the ability to “try out” different persona and see how I liked them. I could experience how a character I portrayed might have felt and reacted to a situation, and compare that to how I might have felt and reacted to the same situation. In the comparison I learned about my character but I also learned about myself.

The Church has long recognized the important beneficial aspects of theatre. It has seamlessly incorporated many theatrical qualities in its liturgy. It is right that it has done so. For when mere mortals come into proximity with the mysteries of the Sacraments or approach the Altar where the salvific sacrifice is recreated, it is helpful to clothe oneself with the ancient, dignified and comforting cloak of vesture, color, procession, chant, and precious vessels. These embrace the worshiper in a humble protective mantle. At the same time, we are thus invited to enter into a different dimension, relationship and reality. Liturgical drama is a profound application of the best of theatre to the deepest of spiritual experience.

I’m thinking about the theatre because some people ask me how I can remain so blasé in the face of my life-threatening cancer. I don’t know how to answer such a question because I certainly don’t feel blasé about it, even though I’m happy to say that I am in a very calm period after the Christmas surgery that removed two errant tumors, that is called “watchful waiting”. What such questioners observe must surely have something to do with what I’ve learned from the theatre.

An actor typically plays a role. Good actors so invest themselves in the persona of the character whose role they undertake, they study and pick up their character’s mannerisms, stutters, glances and gestures. They remain “in character” even during breaks in rehearsals, and sometimes long into “real life.” They are not the person they are portraying, but they so much desire to be authentic in their portrayal, they almost become a simulacrum of the original person. This is obviously beneficial and is a determining factor, I daresay, in the awarding of many an Oscar.

I find something akin to taking on a persona, similarly beneficial on a personal level. I don’t always possess the disposition I would like to own. Sometimes I feel irritable. Sometimes I feel depressed. Sometimes I feel scared. Who doesn’t experience a range of such emotions, particularly when confronted with something strange and threatening like cancer? I would never counsel anyone to hide or deny the presence of such feelings. Indeed, it is well worth experiencing such feelings; and often worth reflecting upon them. But I don’t feel inclined, at all times, to share such feelings with others (nor to subject others to my feelings without permission).

In those cases, it is useful for me to “robe myself” with a more positive persona. I do not deceive others by taking on this mantle. The persona I adopt is authentically me, all the while. The odd thing is that in robing myself in such a way I find it often coaxes my disposition to change. From irritability comes calm. From depression emerges hopefulness. From fright, prayerful resignation from fear. This modification… assuming an aspect I would like to possess, seems to me to be associated in some way with prayerfulness… or is even one answer to a prayer. One aspect of prayer can be to help me become the person I want to be—even if, at the moment of praying, being that person eludes me. Taking on the mantle of the person I want to be… or taking on the attitudes and behaviors I wish to possess, in this semi-theatrical way, might, in fact, be an effective way for me to move more gingerly towards my goal. I believe I’ve seen others use this technique; it may be a universal benefit that can be applied by anyone.

Perhaps this was the unsuspected lesson I was absorbing from my childhood experiences at the Dom Polski. Perhaps, too, it is significant that I should particularly recall the dark recesses of the back of the stage where I could observe, unseen, the people in the skits, and the dancers on the dance floor. What I saw, were two contrasting demeanors: the often frightened, often depressed, often penniless, often worried adults in the room, who, despite their travails, displayed only brightness, good cheer and confident friendliness, especially when they sang their songs and performed in the skits I found so captivating. The huge majority of those “play actors” became the distinguished, admirable and loving people who mentored me and whom I admired as I entered my young adulthood and continue to admire to this day.

The lesson they taught me was far more important than I easily recognized.

Chet

(1) “Dom Polski” literally means “Polish home”. It is the name of a social club in San Francisco for immigrant Polish families to gather. It still stands on 22nd Street near Mission. These days, the immigrants meeting at the Dom Polski are likely from Latin America. But the importance of gathering together in linguistic harmony and to bask in welcome hospitality, is no less valuable today for the groups gathering there, than it was for the groups that preceded them.

I feel I spent so much time at the Dom Polski as a youngster that my spirit must still be flitting about, from the coatcheck room (where I often earned small pocket change, hanging up coats and scarves) to the library and meeting rooms upstairs, to the stage and dance floor and, of course, to the dark recesses of the back of the stage from where I could observe, unseen, all the people on the stage or on the dance floor, below.

(2) Swięty Mikołaj = St. Nicholas

(3) At Riordan High School I was active on the Speech and Debate Team, and played the role of Buckingham in Shakespeare’s Richard III. I also had a stage part in Thornton Wilder’s Our Town. My never-to-be-forgotten stage opportunity came when, in my Senior Year, I won the lead for the King and I. So dedicated was I, that I agreed to completely shave my head for the part! During the intermissions, I needed to apply a lighter shade of pancake cosmetic to my bald head because I’d have developed a “5 o’clock shadow” during the first act. In my adult career, I have been privileged to conduct various classes at the university level, both here and abroad. Teaching, too, benefits from an occasional bit of dramatic or theatrical flair.

The Goodness of Creation and Cancer

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“Perhaps you have noticed

that even in the very lightest breeze

you can hear the voice of the cottonwood tree;

this we understand is it’s prayer to the Great Spirit;

for not only men, but all things

and all beings pray to Him continually

in differing ways.”

Dear Friends,

Summary

It is doubtful that the philosopher/anthropologist, Pere Teilhard de Chardin, a French Jesuit whose books I read in college, would ever have encountered the quotation, above, which is attributed to the Lakota Native-American, Black Elk [ca 1863-1950]. Teilhard [1881-1955] could have, since he and Black Elk were almost exact contemporaries.

Detail

I can just imagine what kind of conversation Black Elk and Teilhard de Chardin might have enjoyed had they met. Teilhard would certainly have endorsed Black Elk’s prayerful insight. Black Elk would have appreciated the lyric phrase the priest used when he posited that all creation “groaned” for the fulfillment of its highest potential.

For Teilhard, the “highest potential,” simply put, was that all creation, animate and inanimate, yearned to render to its Creator whatever was its most appropriate acknowledgement for its very existence.  Black Elk would have understood.

Teilhard also conceptualized a more obscure notion about human consciousness. He predicted a time in the future when there would emerge a “noösphere.” This was a point in time at which human consciousness—across the globe—would somehow become fully integrated and would “converge” as the consciousness of all earthly creation. Such an insight lifted the idea of the interrelatedness of all creation from a commonplace, to a higher level; one when all creation—through the consciousness of humanity—could more completely acknowledge itself as the loving, completely coherent community that was generated and intended by the Creator.

These ideas were heady matter (and inspiring reading) for an idealistic college student of the 60’s. The boldly optimistic image of creation seeking its highest aspiration remains with me, even today.

I remain attracted to the concept that all creation is naturally driven towards achieving its highest potential. I’m attracted to the thought that the human species aims towards the convergence (not dilution) of individuals in a loving community and that humans potentially bring to creation, itself, conscious awareness.

The first is already evidenced, in the biological realm, by the evolutionary push of natural selection (even as it was perceived and originally hinted at by Charles Darwin). Science, and the Church, is slowly discerning a richer understanding of the processes that allow biological species to evolve and adapt to different environmental conditions, perfecting their abilities in the process. We are beginning to see the truth of Black Elk’s understanding, that all of creation, in its distinctive unique way, acknowledges the intentions of its Creator.

The second is in a far different realm. It requires more of us than simply being a part of creation. Scientists do not yet undertand the mysteries of the human mind. They might well be skeptical that minds can communicate in a way that might activate a noösphere. Nevertheless, there are already suggestions of what Teilhard imagined, in the way people all over the world are, for example, using technology to converge more closely… or how peoples of diverse cultures are building communities that are already linked to each other through prayerful awareness. Both types of activity are required, and both examples are already building-up a global consciousness.

Open Source software has made it possible for the world’s software engineers to interact with each other when writing programming code. This is an impressive application of technology in support of human collaboration. It has enabled rapid advances in solving sophisticated mathematical and scientific problems. One result of such work is that there now exist enormous databases of algorithmic code snippets that can be used, freely, by anyone to build even more sophisticated computer programs.

Another example of the way human aspirations are already linked—even over great geographic distances—is the way social networking tools are influencing the geopolitical and social evolutions that are taking place in diverse corners of the world.

Prayerful communities exist on every continent. To the extent that they are genuinely seeking an understanding of our relationship with the Creator, our relationship to one another or our role in creation, they represent an important stage of convergence.

Admittedly, these are very crude examples that only dimly hint at the noösphere. But they help me imagine, in tangible ways, what is otherwise obscure to me in Teilhard’s use of the term “convergence.”

Whether or not I understand its details, what seems clear to me is that we humans live—as I believe the Creator intended us to live—in an existential reality of perpetual potential.

Fulfilling my potential properly, and to the extent possible for me, is my life’s challenge. Our collective success in doing so (or lack of it) is continually reflected in the evolutionary history of our species.

This is a buoyant understanding and joyous response to the goodness of creation. “God saw, and God saw that it was good.”

Which brings me to a conundrum.  What about my cancer?  What role does it play in this good creation?

My cancer is undeniably adept. Scientists believe that the genetic mutations that characterize cancer cells have co-evolved with human beings for millennia. Put another way, cancer cells, genetically speaking, seem to have co-existed in human beings—maybe even required us for their evolution—right alongside the countless “ordinary” cells that give my body its corporeal reality. My cancer is, in this sense, already fully a part of me at my birth.

What we don’t know about cancer would fill the world’s libraries. What we observe, is nothing less than astonishing.

Cancer has developed an ability to avoid the body’s impressive immune system. Cancer can overcome the body’s natural defenses so it can engage in its chosen activity pretty much unrestrained. Cancer adapts itself, specifically, to the environment of different individuals. Each person’s cancer seems largely to be customized to that person (making generalized remedies difficult to achieve). Cancer cells have been successful in overriding the natural cellular ageing process that governs the duration of functionality in “ordinary” cells. Cancer cells have an unrestrained capacity for replication and life.

In many objective ways, cancer can be admired for its manifold adaptations to its environments… except for the fact that what cancer cells have evolved to do—combined with their unbridled life goal—is counterproductive to the life of my own body. Is it just that these particular cells are “out of order”? Is my cancer which has such a long pedigree essentially bad or evil? Is the cancer in my body there for any other reason than to harm me?

None of these questions are easy to answer. What appears to be the case, however, is that these cells have “learned” several techniques about living in my body. Scientists could well learn a lot from understanding what and how they employ those techniques. Indeed, it is also likely that in such learning, not only will researchers be able to design a method to contain and restrict the harmful effects of cancerous activity; they might well learn important processes and methodologies that could be used to enhance the life of persons with other kinds of illnessess and maladies.

These three trains of thought are very satisfying to me in a time of uncertainty and discouragement:

• Creation is an intended initiative of a Creator. Creation is, by definition good. “…and God saw that it was good.” Creation’s natural response to being created is to acknowledge the Creator by naturally striving to be the highest fulfillment of the Creator’s intention. So far as we can tell, only we humans have a choice in this matter.

• The apparently unique gift of humanity is our intellectual capacity, our self-referential awareness as created beings and our ability to choose to direct ourselves towards fulfilling our own special potential. When we do this we do so in concert with all creation, but perhaps also on behalf of creation through our collective manifestation of consciousness.

• In aspiring to act humanly, we can build a community of awareness that can activate our collective potential. This requires a humble attitude of love and recognition of each other’s created brotherhood and sisterhood. It also requires a studied and felt concentrated consciousness of our particular and potential role in creation.

In trying to express this carefully, my words sound pedantic, somewhat abstract and theoretical. In fact, to recognize the goodness of all creation, and to recognize that I can choose to fulfill my role within creation to the best of my ability, represents something joyful and exuberant.

Perhaps one way to understand it is the converse of the way I have previously described our dog, Gracie. I previously wrote that Gracie provides for me unstinting loyalty and constant affection and that she takes me out for health-restoring walks. I get an inkling of what I am to do with respect to creation when I provide food, water and shelter for Gracie. I see my different role vis-a-vis Gracie, particularly when I take her out for a walk, all the while anticipating traffic, watching for potentially aggressive animals on the path and somehow orchestrating her experience to bring Gracie delight. I do this through my conscious attentiveness. I should employ this same attentiveness to all creation around me. But its never a one-way activity; such attentiveness seems always to consist in a reciprocal appreciation of life. Perhaps this mystery is best prefigured by the exuberant prayer of one who pre-dated both Black Elk and Teilhard de Chardin. He wrote a long song whose structure  reads as follows:

Praised be You with all Your creatures…

…especially Sir Brother Sun…

…through Sister Moon and the Stars…

…through Brothers Wind and Air…

…through Sister Water…

…through Brother Fire…

…through our Sister Mother Earth…

…producing varied fruits and colored flowers…

 

 

Chet

Chapter Two

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Dear Friends,

Chapter Two…

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

Detail

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

Genesis

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

Action

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

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

  Pathways

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

Stimulants

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

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

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

We’ll see… in future cancerblogs.

Chet

Courtesy and Blessings

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Dear Friends,

Summary

I was well-taught by my mother in the precepts of courtesy. This is why, until today, I have felt increasingly guilty.

Details

Monica and I have been receiving very encouraging and important-to-my-well-being, notes, cards, e-mails, letters and phone calls expressing wishes for my health and inquiring about our progress in addressing the cancer that is so much a part of our attention lately.

    A family experience

I am particularly grateful for those notes that recognize that it is Monica and our children—far more than I, alone—who bear the weight of this disease. While I, as “the patient”, must contend with the physical, emotional and real consequences of being ill, my family and other loved-ones experience the same illness in ways that can always trump my personal challenges. It is because they possess the curiously human quality of “empathy”.  Empathy, which is a “sharing in” or “living with” another person’s experience, seems inevitably to do so with a heightened intensity. In the case of illness, with greater regret, greater sensitivity, greater anger and greater objectivity… therefore, with greater experienced sorrow. Those messages that succeed in recognizing this reality are particularly appreciated. They reflect an understanding of how an illness can affect the dynamics within any family, and particularly within our family. They help me articulate an awareness that my illness is not, and can not be, in any sense, solitary or isolated. They help me realize I cannot be selfish about these received communications of encouragement that so assists me in dealing with my cancer. Properly speaking, each of these messages assist every one of us, Gryczes, in dealing with our collectively experienced cancer.

    Creativity

Several notes contain creative ways for friends to provide day-to-day respite, one of my favorites being an offer of occasional dog care or dog walking if we were unable to easily fit that into our schedules. In our case, our dog, Gracie, deserves such pampering. She is, herself, contributing a great deal to the recuperation from my Christmas operation. Gracie regularly sniffs and checks my bandages to make sure things are mending properly, and she reliably curls up warmly beside me when I take my afternoon (or at whatever time) naps. Despite the presence of cancer in our lives, Gracie is unabashed in expressing her exuberance for life in the moment. She reminds us all that we must revel in the same joy of life, however we might be experiencing it in the moment. She seems to be saying: “Life is always an amazing grace. Acknowledge it.”

    Appreciation

Many notes express appreciation for what we (the author of the missive and we, ourselves) have enjoyed and experienced together. Such notes underscore that none of us live our lives in isolation (recall John Donne’s memorable line: “No man is an Island”, and the meditations of Thomas Merton on Donne’s pithy observation.) Reflecting on happy communal experiences is always a good antidote to the annoyingly necessary self-attention required by recuperation and self-aware health-care.

    Guilt

I can hear my mother’s admonition: “Each of these notes deserves an individual, personal acknowledgment and reply.”
For a while, I kept the correspondence (along with the enclosed prayer cards, bookmarks, Mass cards and other remembrances) in a pile, to answer them, properly, as my Mother taught (and, indeed, as I was inclined to do). Somewhere along the line, I realized I’d probably never get around to acknowledging them, individually. It made me feel a bit depressed to have drawn such an unworthy conclusion.

    An honored place for blessings

On the delayed Christmas festivities our family joyously celebrated in the middle of January, this year, I received from Monica a precious gift. It is a beautifully-decorated, hand-plaited basket from Palestine which was described as a “blessing basket”. Into it, Monica had placed sample printouts from among the e-mails she and I had received over the past 18 months… ones that have done so much to buoy our spirits and have helped keep us in a state of emotional equilibrium, however delicate.
My “blessing basket” now rests in an honored place in our home. Today, I slipped into it, the cards and notes I had piled up to respond to, individually. All those prayers, thoughts and wishes represented by the scraps of paper are blessings, indeed. They are efficacious (I would dare say, essential) to healing. They are certainly required by us. They help us maintain a proper perception towards this stubborn illness. We are greatly indebted to the writers. We also appreciate, very much, the salutary effect we feel on receiving each of them.

    A Spiritual two-way wormhole

There was a delightful “Frank and Ernest” cartoon on the comics page of our newspaper this week. Frank claimed that Ernest was living proof that Descarte’s maxim: “I think, therefore I am” is not reversible. (This is quite true; a truth to which (I can’t resist observing) our Congress almost daily distressingly attests.)  Fortunately, its not true of our blessing basket. When our family recites Grace, or mumbles a prayer-in-passing, we now specifically include all those who are represented by our “blessing basket.” The blessings  we’ve welcomed, thus rebound to all those who so kindly continue to bless us. Thank you!  Know that you are blessed for your thoughtful graciousness and that, on “down days” we gratefully re-read them to regain our “good day” composure.

Chet

What Now?

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Dear Friends,

Summary

Writing these reflections has heightened my awareness of how uncertain a task it is to honestly describe one’s emotions. It’s not that I wish to deceive; it’s just that I sometimes wonder if I am expressing what I want my feelings to be, rather than being able to admit to what they truly are.  I do my best; but the question lurks in the background, eventually to be better understood.

As of this morning, there have been scheduled for me, a battery of one-year follow-up tests. I’m writing these thoughts, intentionally, before undergoing the tests. I’m curious how I will feel about these reflections after the test results are returned.

Details

August is an auspicious month for me. It is the month of my birth. In the past, I know I often regarded August with a kind of guilt. Here, came I, into the world, demanding attention and the resources from a more turbulent August. Men and women, that August, were giving up their lives by the score, (even on the very day of my birth) precisely to defend the freedoms, discoveries and self-determinations that were my exclusive self-centered preoccupations as a newborn. I recall one family story—retold laughingly, to be sure; but only many years after the apparent distress/delight of it. My Father had apparently—by some, not small, miracle—been able to acquire a small can of Vienna Sausages in our exile in wartime Scotland. He and my Mom determined to share with me, their infant toddler, a small portion of this precious windfall of scarce protein… only to watch me—all delightedly oblivious of their sacrifice—voraciously gulp down one after another of the compact little cylinders of nutrition, until the very last one was gone. Hearing that story as a teen, I found it difficult to believe I could have given my parents any delight or joy at the miracle of my birth. But they always and consistently communicated just that: that I (and my Sister, who came later—in a more halcyon time—into their lives) were the thrilling individuals who blessed their own lives with a particular joy. They wondered at us and nurtured us, as our personalities emerged and we unfolded as human beings under their good care. What a gift it is to be so loved (despite gulping down a whole tin full of Vienna Sausages!) How wondrous that their love continues and sustains me long after their ministry on this Earth is long over.

Life continues to be a gift. Yet, I also think of this August as the anniversary of my cancer (even though the discovery of my cancer actually was made a little earlier, in June 2011). I’ve just been scheduled for a follow-up colonoscopy and a series of “chest-through-pelvic” CT scans (with little input, I might add, from me… It was just “scheduled, period.” [So,” just show up, Chet!”]). I celebrate the period of a year—which, as Monica explains, “I mostly ‘missed.'” I dare say, with not a little justification, that it was mainly she, and my children, who suffered the greatest anxiety and loss during this past year. My neuropathy has changed many of my habits and behaviors, and continues to inhibit me and draws unwanted attention to itself.

I have been humbled (and nurtured, as well) by my friends. I’ve always recognized that I’ve been blessed to have friends; but never had realized, as much as now, that none of them are alike! Each has personal reactions. Every one responds, fears, grieves and consoles very individually and differently. Every one, in ways that would be intolerably embarrassing for me, were it not for the unguarded sincerity and candidness they each have displayed towards me. I have a shelf-full of amazingly diverse books given and recommended to me, several of which I’ve already enjoyed, and others I expect to enjoy. (The books, in their own right, deserve to be a subject of a future blog posting.) During this past year, too, I have lost a dear friend who was diagnosed at the same time as I, but with a more virulent cancer than mine. I only came to know him more closely through our common trek with our unbidden cancerous companion.

I am looking forward, as always, to the year to come.  For quite some time, I’ve been fond of pointing out that each year I celebrate, turns out to have been the “best year of my life”. It ever must be so if I perceive each and every breath as a gift and an opportunity, as, instinctively, I do (reinforced by the little story of that tin of Vienna Sausages and the context within which I consumed them). The predominant thoughts on my mind, as I approach this birthday, are “What Now?” “What will there be to discover and learn in the year to come?” “Have I changed because of the year gone by?” “What has changed?” “How?”

These call to mind a thought-experiment I was encouraged to ponder as a teenager on retreat: “If you knew that you only had but one more day in which to live, what would you do differently?”

Of course, it’s a trick question expressed the way it is, throwing emphasis on itemizing the things one would do differently. The answer, instead, is aimed at comporting one’s daily life so that it is indistinguishable from one’s last day… so that nothing need be done differently. No regrets for actions taken or not taken. No embarrassment for words spoken in thoughtlessness or anger. No missed opportunity to express, enthusiastically, the joy of life or the pleasurable obligations of companionship. And no cessation, either, of ongoing gratitude for God’s abundant grace.

To be sure, only Saints (and sometimes, I’ll warrant; not even, they) succeed in achieving these goals. Apropos of this, I should mention that Monica and I recently brought home a newly-adopted young dog. She’s a “rescue dog,” named “Gracie”. Without our intending it be so, Gracie has taken to assisting me in my endeavors. It is impossible not to observe that Gracie’s got the solution to the thought-experiment down, pat. It may be more challenging for us, mere humans to master the goals suggested by the though-experiment! Lucky, indeed, then, that I appear to have been given more time to work on mine.

 

Chet

Waiting…

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Dear Friends,

Summary

The fact of issuing this second successive blog in so short a time is a decisive indicator of recovery from our bout with cancer. I’ve been thinking about ancient wisdoms as I am slowly emerging from the discomfiting “waiting period” that followed the cessation of my chemotherapy.

Detail

Immediately after terminating my infusions, Monica and I felt a nervous exhilaration that the worst had passed. Unexpectedly, I experienced a period during which an onslaught of side-effects took all of my attention. (It is unusual for many, to experience side-effects after chemotherapy… they usually accompany it. In my case, I experienced relatively fewer side effects during my infusions than my friends did; but the side-effects came along with fair intensity afterwards.) Following that, as my body metabolized and rid itself of leftover toxicity from the chemotherapies I’d undergone, I began to experience a constantly distracting and annoyingly disabling neuropathy. The neuropathy manifest itself in painful extremities: fingers that were numb but simultaneously tingled electrically; feet that gave me the impression of walking on cobbles even though the floor beneath my feet was flat and smooth. Ultimately, my doctor prescribed some medication that numbed the worst of my neuropathy.

Once I began taking the additional medication, my neuropathy began to feel as if the pain was muffled by a pair of good thick mittens. The neuropathy was still there, but felt as if it came from a distance. I haven’t recovered command of my fine motor coordination. I still drop things (although I’ve become more careful in anticipating conditions in which I might be expected to not have a firm grip on items. Often, I’ve noticed, the trick is simply a matter of slowing down a bit, and giving some thought to what I am about to pick up or move; something that, in adulthood, I’ve forgotten to do as often as I did when I was a child.)

Next began the uneasy period of “waiting” that has caught my attention.

• Waiting, first, for some bad news that my cancer had revived and had been discovered again in my body. I awaited such news knowing it would be impossible to learn that my cancer had been cured. There is no positively conclusive evidence of such an occurrence (however hard I might wish for it). Medical science has no tests that can confirm that a cure has been effected. Doctors only possess ones that can indicate failure: that a resurgence of tumor growth or reappearance of cancerous activity has shown up again. So, even if my caregivers observed nothing adverse taking place in my body, my mind wondered if, perhaps, the cancer was still there, lurking just beneath the sensitivity of medical equipment. If so, the bad news I awaited would inevitably arrive.

• Another type of waiting was to see “what would come next?” There have been enough surprises along the path after the initial shocking surprise of my diagnosis, that it seems rational (even for the optimist I am) to expect more unpleasantries. I know this to be true, because, even now, when I tell people that there has been no sign of my cancer’s resurgence, I find myself adding (sometimes sotto voce) “…at least, so far.” I actually dislike this in me. It is both an expression of distrust in what the professionals are telling me, and a kind of superstition: that if I say out loud that “I’m free of cancer!” then the cancer will “hear me” and return. Try as I might to rid myself of such a silly, nonsensical pattern, I still find myself muttering “…at least, so far.” I suppose, at its base, the expression is some kind of subliminal self-protection against potential future bad news… as if I’d known it were coming all along. Whatever its source I don’t much admire it, but accept it as an expression of lingering fear.

• A third kind of waiting I’ve been experiencing is for the arrival of a time when I would feel, again, as I had before all this began. Part of the process of participating in the course of my recovery has been attentiveness to my condition. I’ve written about this previously. But I can’t say I ever previously paid enough attention to “how I felt before”, to have a reliable baseline for comparison with how I feel, now. Even so, I felt a compulsion to try to compare “now” with “before”. “Now” seemed always to come up a little short than “before”. So I continued to await the impossible return of “before”. I don’t like this in me, either. I have always in my life felt that “now” is the best I’d ever experienced. The lesson this suggests is that—despite limitations, aches, and pains—now is the life that is mine to live… and it is still the best ever.

While the concept of waiting dominated my thoughts, I had begun to realize, “time, it was a-wasting”.

In a book he wrote about living with a mentally-disabled child, 1994 Nobel prize-winner and novelist, Kenzaburo Oe wrote about the importance of “accepting things as they are”. I take one meaning of Oe’s expression to mean “…not the way we might want them to be” nor—as is frequent among wisdom-writers—”…not the way things should be (or could be… if only we…)”.

Reading Oe’s phrase “accepting things as they are” helped me to recognize the counter-productivity of an attitude I hadn’t even noticed I’d begun to adopt: waiting (as distinct from living). Waiting, in some illusory way, suspends the present and leaves one temporarily suspended, too. But if life is to be lived, it must be lived the way we find it, not the way we wish it was; and certainly not in a condition of suspended animation, either.

Of course, someone is bound point out to me that “accepting things as they are” will surely lead to passivity. But that would be wrong. Life—as we observe it in all creation around us—is anything but passive. All life flourishes in its own context. Mine will only flourish if I resist waiting and, instead, keep engaging myself as energetically as I can with living. The instinct to wait surely is counter-productive, even toxic, with respect to my illness; as it is with respect to my mental and spiritual well-being.

I seem to recall that Buddha convincingly endorsed the value of living life fully in the present. I’m happy to be experiencing a vigorous return to Buddha’s sage advice.

Chet

Peripheral Neuropathy and pickup-trucks

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Dear Friends,

Prologue 

The reason for the long hiatus since my last blog posting is that I have been experiencing difficulty accurately touch-typing. For me, this has been extraordinarily frustrating, and personally very discouraging. The experience led to my being more than a little depressed. After spending too much time (by my estimate) in the doldrums, I fired-up a computer application that has been lying dormant on my computer ever since I aquired it in the hopes that it could generate—from the audio track of a completed episode—a printed transcript of a GLOW[1] episode, a task for which it proved entirely unsuitable. The program is a voice-activated dictation application.[2] It works well when a speaker devotes a modicum of time “teaching” it the nuances of one’s particular diction and typical vocabulary. It quite dramatically fails to interpret voices with which it has had no previous exposure or training.

So I’ve devoted the last few days to learning about the program and tutoring myself to master the delicate art of dictation. The program is admirably written and comparatively easy to learn (as much as learning an unfamiliar computer program is ever “easy”). Dictation is a skill that was far more common in the generation previous to mine. It fell all but completely out of use in my “do-it-yourself” generation. It has only been recently revived when computer processing power allowed its complex implementation to be ported onto computer platforms. I’m employing this clever program to generate the text of this blog. It is going remarkably well and gives me great encouragement.

But I’m finding that articulating my thoughts, out loud, constitutes a distinctly different creative process than letting my thoughts tumble around in my mind, in silence, before I commit them to the keyboard. For me, even if no one is present to hear them, speaking my thoughts out loud, before I’m ready, just feels a little like a violation of some of my privacy. I’ve no doubt it would feel differently for an extrovert! Fluent dictation will take some time and adjustment. I am curious to learn what kinds of differences will result from having to verbalize my thoughts ahead of their being written. Creativity, in my observation, has always been inspired by facing constraints, so I’m curious to find what changes are in store for the future.

In the meanwhile, I’m pleased to assert that, in what follows, any spelling errors or typographic faux pas are completely the responsibility of my software. They will not be my responsibility (this time)![3]    🙂

Summary

Imagine a pick-up truck moving along steadily at 30-odd miles per hour. The pickup truck is a metaphor for the regularly-scheduled chemo infusions I’ve, until recently, been receiving. Now imagine that a pile of bricks had been loaded onto the bed of the truck, conveniently positioned by the rear gate. The bricks represent the multitude of effects the chemotherapeutic infusions have had on my body: both beneficial and damaging.

When I terminated my bi-monthly infusion treatments—seven weeks ago, now—I had, metaphorically speaking, slammed on the brakes of my pick-up truck, bringing it to an abrupt stop. I expected that I would immediately feel better. I wanted the ill effects of my treatment to cease as abruptly as the pickup had.

What I’d neglected to consider is that a load of bricks has its own mass and momentum, entirely independent of the pickup truck. This meant that—though the truck had stopped—the bricks would continue their forward motion, sliding along on the bed of the truck until their energy was dissipated by friction (or until they collided with the cab). Simple physics. Why hadn’t I thought of that?

Detail

The particular “brick” that has most bothered me in the aftermath of terminating my chemo infusions is peripheral neuropathy. It is a condition that adversely affects the extremities (fingers and toes, prime, among others). There are other medical conditions that are associated with it, but peripheral neuropathy is a well-recognized effect of cancer treatments. In my case, my neuropathy only really became evident after my infusions were terminated (after the pickup truck had braked to a halt). What’s worse is that the effects, far from being diffused by time, have become increasingly debilitating as the days have passed. My oncologist suggests patience. She assures me that the symptoms will disappear, but prepares me for the fact that it may take months… or even years.

Neuropathy causes the extremities to tingle, be painful and be particularly sensitive to cold. It appears that (like my damaged taste buds) the affected nerve endings at the extremeties of my body send confusing signals to my brain. In my case, my fingers are not sensitive enough to discriminate when they are on the “home keys” of my computer keyboard. My fingers dutifully aim at the correct keys, but seem unable to recognize the physical properties of my fingers to discern (or adjust to) when they’ve lighted on the proper keys. Something similar is true of my feet. I must be especially careful going downstairs because my feet give me the impression of landing on the tread several inches earlier than my physical feet actually touch the step. The other day, while walking across the patio, I distinctly felt as if I were going downhill and executed a little running step to slow down my momentum. Of course, since there was no reason to slow down, my running step looked like part of a little unnecessary dance routine. But, at least, it was not dangerous; whereas losing my balance or trusting in an erroneous depth perception is an altogether possible danger. So I’ve become attentive.

These, and related sensations, can provoke frustration and even anger. I am not prone to anger. I am well aware that my cancer justifies feelings of anger, and that for many patients, being afflicted with cancer likely arouses legitimate feelings of anger. I am not one of these, as far as I can tell. Anger belongs to a fundamental complement of emotions experienced by human beings. But I have never experienced the beneficial effects of personal anger. At most, my anger gives me a temporary relief from some stress. But it replaces my relief with a considerable bit of stress of its own. While I can admit that many individuals may benefit from expressing anger in ways I have not yet learned, anger has never proven (for me) to provide a solution to what may have caused it in the first place. Instead, faced with the kind of frustration and discouragement that peripheral neuropathy causes me, I tend to seek out alternatives that can overcome the limitations of my experience… such as a dictation system that can eliminate or replace my reliance on keyboards.

I’m curious about why it is that I don’t rely on anger as much as others of my friends do. I wonder what it was that dampened the value of this emotion in my personality. I have an early memory about learning to deal with pain or frustration. It suggested an alternative to anger. The alernative was taught me by my parents and was reinforced by the Dominican Sisters who were my elementary school teachers. When, as a child, I became obsessed by things beyond my control; or when I suffered a physical pain that was not life-threatening (but seemed worth exaggerating for the pity it might evoke), I was routinely advised  to “offer it up.” What was meant by this suggestion was that my pain—taken in a broader context—could be transformed, by dint of my own attitude, from something negative into something beneficial. By “offering up” my ‘negative’ suffering I, myself, could convert it to some equivalent “positive energy” for someone else in need of it.

As a child, I interpreted this action as having an immediate effect. If I generously offered up my pain (and ceased complaining about it), someone else in the world for whom I dedicated my pain, might feel a lightening or compensating relief of their own pain; or a soul “in Purgatory” might ascend from that temporary confinement to a more complete participation in the joys of Paradise. It was the equivalent of the physical Law of the Conservation of Energy; only this had to do with the “Conservation of Painlessness”.

As an adult, these explanations involve an acquiescence to an entire theological construct. Such a construct may or may not be as compelling as it may have been in childhood. Or, for those not raised as I was, such a transformation of pain into benefit might not even seem to have any validity at all. But, as I think about it today, it would be foolhardy to dismiss the lessons given by wise mentors to children. Doing so risks dismissing, as childish nonsense, the underlying message my teachers were intending to convey. To consider the suffering of the world, when one confronts one’s own suffering, is an admonition that has enormous (and somewhat forgotten) value. One has only to read the Book of Job to realize there are more complex issues at stake than one’s personal suffering.

One of the least appealing aspects of my illness is its necessary focus on self-awareness. I am admonished to monitor my blood pressure several times a day. I am asked to take a glucose reading in the mornings and evenings. I have an assortment of pills to take at different times during the day. I must guard my nutritional intake. I must partake of sufficient exercise. I become, perforce, increasingly sensitive to routine things I formerly took for granted (such as touch-typing or merely walking).

It is well and good that I pay attention to such details. But one of the enemies of a balanced personality (and a serious impediment to a reciprocal community life) is self-absorption. Self-absorbtion is perilously proximate to self-awareness, especially the kind of self-awareness that arises from and is prompted by discomfort and pain.

So, as I struggle with a user interface resulting from thousands of lines of inanimate software code and an unnatural-feeling but remarkably-effective method of textual input; employed for the purpose of overcoming the (in the larger context, trivial) inconvenience of a neuropathic by-product of the treatment of my life-threatening illness, I am altogether grateful for my childhood upbringing that taught me to step outside my self-attentive discomforts to dedicate them for the lifting of pain, in general, from a pained world.

As a child, I had no doubt about the efficacy of my attitudinal reorientation; no doubt that my pain could be redirected to remediate pain elsewhere. As an adult, I can but hope and trust that something of the sort still really will happen. At the very least, its good for me to believe that it will.

 

Chet

 

Notes

[1]  http://www.greatlibraries.org

[2]  http://www.nuance.com/for-individuals/by-product/dragon-for-mac/dragon-dictate/index.htm

[3]  I couldn’t help myself… after the program was through transcribing my dictation, I hurriedly scanned and corrected the (remarkably few) typographic oddities that had been incorporated in the text. Homophones and homonyms seem to be sources of difficulty. I’ll do a bit more “training exercises” before attempting my next blog posting.