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)

Colectomy recuperation and “losing control”

Dear Friends,

Summary

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

Detail

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

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

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

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

Losing Control

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

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

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

Chet

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