After my simulation my friend Danny and I sat for a while in the lobby of Mt. Zion discussing the course of treatment.

The stats:

Without radiation:  40-90% of recurrence.  100% chance of losing the facial nerve with further surgery.  In addition 2-5% chance of malignancy.  Using ballpark math, that equates to a 1- 4.5% chance of having a malignant tumor or and/or a 40-90% chance of eventually losing the facial nerve.

With radiation:  5% chance of recurrence.  And a .001% chance of a secondary malignant tumor unrelated to the parotid.  Plus the side effects.  That leaves me with:  .025% chance of a malignant parotid tumor, a 2 – 4.5% of losing the facial nerve from a recurrent benign parotid tumor, a .001% chance of a secondary malignant tumor, and a 100% chance of reduced blood flow to my jaw and teeth, as well as heightened sensitivity to the sun.

Of course, the stats are generated by people.  And in general I don’t trust people.

Can I have a moment to think about it?

While pondering this with Danny, a crew of firemen charged into the building and anxiously began examining some piece of equipment behind us.

You never know what or when its going to blow.

© Andrew Lewis

These pictures were taken during my simulation in which they made my mask and made some tomographic images to develop my treatment plan.

© Andrew Lewis

I’m becoming pretty intimate with this machine.  The green laser beam is used to line up my body so the right areas get zapped.  The lining up part still seems a little fishy to me.

© Andrew Lewis

The radiation oncology resident taped a wire onto my neck so they could better identify the surgery field that had been dissected.  I like this picture because it feels particularly corpse like.  It’s always a nice reminder.  Apologies to those who don’t want to be reminded.

© Andrew Lewis

This is my friend.  They created the mask during my simulation in a process that was similar to water boarding except without the torture.  They soaked the compound-impregnated mesh cloth in warm water, draped it over my face and bolted it to the table.  My hands were bound with strips of cloth, pulled down and tied to my feet (the idea being to keep my shoulders taut).  I lay there for 20 minutes, waiting for the thing to harden.  I like the anguished  Munsch-like rictus – if ever there were an outer expression of my inner state of being.

Note the masking tape with the guidelines penned in with a felt-tipped marker.  The mouth prosthesis intended to keep my tongue in place was fashioned from a popsicle stick, half a piece of cork, some masking tape, and a pack of sculpy.  We’re talking Apollo 13, here.

I love these guys.

Nothing remarkable,

but at the same time fantastical.

From my perspective I can gather a little information through the white mesh of the mask.  I see a trace of the green laser beam cutting across the tip of the tongue depressor.  I’ve tried to check if it hits the same place each time.  Sometimes I can see the face of the linear accelerator as it repositions around my head.  When they shoot x-ray images I see a broad deep blue flash.

Today I gave a doll to Dr. Quivey, the radiation oncologist managing my care. When I first told my daughter her name, she laughed and asked how I could possibly have a doctor named Quivey. Kwivi in Hopi translates to “particular” or “detail-oriented” or fussy. My Hopi friends concurred, though, that when it comes to a rad onc doc, this is probably a good thing.

The doll I gave her represents Dawa, the sun, but represents more deeply the radiant energy that not only grants us life, but has the power to take it away as well.

He looks nice. I’ve been looking at him for years now, but cannot at all profess to understand what he really means. But I do know what I see. I see rays represented by feathers – which in Hopi cosmology are also the vessel and vehicle for prayers. Eagle down is symbolically conflated with moisture and smoke and the seminal force that through intent is transmuted into life.

And I see that his mouth – the source of breath and utterance – is also represented by a prayer feather. The lower portion of his face is blue, the water world – the subterranean from which all life emerges. The upper is composed of the two halves of the celestial vault and the cyclical waxing and waning of energy and life that occurs each day and in each year and in the course of all of our lives. The beaded horizontal line appears to be where we are – the thin material and terrestrial plane in which we exist for a moment. And the vertical bead suggests the channel by which we emerge from one world to the next. It’s the birth canal and the point of exit when we die. And if we live right, it’s the gradual and wonderful process of unfolding as the world reveals itself over time.

I feel grateful to my doctor and (hopefully limited) executioner. I wouldn’t want it any other way.

© Andrew Lewis

I think they need a little help here.