Comic relief from the chore of cancer

How can I concentrate with all these squash around?

So here's the deal.

Marshall McLuhan said "Sensory overload for the artist becomes pattern recognition."

I was succumbing to sensory overload as a cancer patient...but the pattern was morbid and unrelenting.  I had cancer, and everyone with my kind of cancer died very unpleasant deaths.  All our organs and systems fail gradually, and by the time it is lights out forever, we will have suffered protracted pain and dysfunction.  We won't be able to care for ourselves at the most simple, intimate level. That process begins with the disorder caused by treatment, in many cases.  A known side effect of Ibrutinib, the biologic drug of choice for CLL patients these days, is diarrhea.  The precursor to diarrhea is a combination of digestive disorders including pain, bloating, and swallowing difficulty that can disrupt meals in an alarming paroxysm of choking, coughing, and attempting to expel food from your air passage.  And these are the easy things to deal with, because the shape and consequences of the immediate disorders are known.

The unknowns include the general feelings of malaise that interfere with thinking, feeling and acting.  You become someone you don't know for increasing intervals, and that someone you don't know has the keys to your house, and the password to your accounts, and the ear of your spouse and doctor.

As much as people care, there are limits.

As much as people want to care, the friends and family have only so much time and energy to try to follow the ups and downs of the "disease" that can be completely masked by normal appearances at times, and completely manifest as abrupt changes in mood, ability, language and motivation...all the things that combined make us "us" to others.

In a word, we tend to go away.  Without warning.  And whether we are away or here, we increasingly need others to attend to us, to compensate for our lapses, to forgive our disjunctions, to tend to our needs.

Before long, sentiment is strained to the breaking point.  Then it breaks.

Before long, nostalgia dries up, appetites and desires fade, hope shutters.

And we still are around, but we aren't.

Many people with cancer become "patients" which is a role society blocks out but doesn't script very well.  Whose patient?  The oncologist/hematologist who can't sit with the cardiologist in the same room with the patient?  The cardiologist who doesn't accept the research that links CLL and Ibrutinib with increasing heart failure?  The internist who can't coordinate the various providers partly due to the lack of integration of electronic patient records, partly due to the fragmentation of the whole health industry as technology disrupts every expectation, every custom, every old rule?

I decided long ago to reject the role of "patient."

I worked for decades to create a role for myself as artist and philosopher.  This role was never fully embraced by family, friends, community, or society at large.  Why should I expect you guys to embrace me as a patient?

I don't .

Sara is my wife.  She will never be my nurse. She will never be reduced to an orderly emptying bed pans, washing my erupting skin, trying to soothe me during the night sweats in which the anxieties and fears of a lifetime seem to ooze out of my body, like my very humanity, until I am just a failing piece of meat.

Through the lessons of choosing art and philosophy over politics or material ambition, I have learned both the humility of the outsider, and the resolve it takes to patch together an identity that must swim upstream as long as it can swim at all.

So that's the deal.  I will swim upstream as long as I can swim at all.  I will continue to be self-sufficient in ways most of us don't understand or want.  It isn't defiance or problems with authority.  It isn't anarchy.  It is the role of the bird dog who must track and retrieve the object of the hunt for his master, who cannot smell or navigate the marshes and the thickets.

And you dear reader are my master.  I am your dog.  And I am the bird.

Sleep well.  You have a big day ahead of you.