Chemo Infusion 2/12—”What, Me Worry?”

Dear Friends,

Summary

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

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

Details

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

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

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

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

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

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

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

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

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

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

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

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

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

Chet

Related

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

Self-attention vs. Self-centeredness

Summary

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

Detail

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

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

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

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

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

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

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

Chet