NEADed and Blessed

I am NEAD.
Yesterday after visiting with my oncologist at Stanford in San Jose and a week of repressed scanziety – I had a PET CT Scan last Wednesday and let’s just say my perky miss Cancer self was a little crabbed than usual. Dr. B entered the new room in the new facility where I receive the bulk of my oncology services, palliative care, infusions, and psychosocial assistance. He and my other physician enter through sliding doors behind the patient visitor rooms from a bustling scene of nurses, nurse practitioners, technicians, and I imagine a scene from the 1984 movie, Brazil by Terry Gilliam, of which film writer and critic Pauline Kael wrote:

It’s like…a nightmare comedy in which the comedy is just an aspect of the nightmarishness.

An apropos description of waiting to see the progress of stage four cancer, I might add. This time, though, good news. Nothing new, nothing grew and no evidence of active disease, or NEAD. I haven’t heard those words with respect to myself in the three years since my diagnosis. Others have reported NEAD to me on their progress. I put on my happy supportive persona that I drop like an unwanted boxed pre printed drug store Halloween costume, the kind my mother would buy for me when I was seven or eight years old. The kind that left me in tears desperately wanting to make my own instead.

Admittedly jealousy and self pity aren’t unusual emotions to go away from those communications with, at least for me. And I feel selfish for those emotionally shallow responses, which I keep private and away from judgement. If the best we #lifers can get is NED, no evidence of disease, I’m just one letter away at least for today. I am blessed to have access to world class care and the love of professionals, my few friends and the small yet effective support structure I’ve built around me as I might a scaffolding around my fickle health that shifts back and forth between hating my body and giving up to short reprieves to allow me a chance to feel free of the shackles of disease for just a while.

I am certainly blessed.

An Apache Blessing
May the sun bring you new energy by day,
May the moon softly restore you by night,
May the rain wash away your worries,
May the breeze blow new strength into your being.
May you walk gently through the world and know its beauty all the days of your life.

Liesl a sister writer and reader of this blog, shared these inspirationally soothing words and hoped they would help me and others navigating cancer. In this world it’s important to remember some of the dearest gifts bear no financial cost; the dollar value does not equate to the intrinsic value. Regardless of the devastating financial costs of cancer, equally as high are the devastatingly effective cost of truly feeling alive. Words of inspiration alleviate some painfully high costs, such as disappearing friendships or my ability to travel outside of the country on a whim. Although now these seem so massively cheap and unimportant.

Thank you Liesl for sharing this blessing, although you did not ask for any credit for doing so. I still want to thank you for reminding me of why I keep writing: relatable experiences lift the eyes of others facing or looking back on major shifts to our lives, not only Cancer.

Worth a repost

I Judge Myself through Love

Click on the link to read a post of my daily self-directed “prayer.” It’s more philosophical than religious, more a reminder that the antithesis of pain equals Love ❤️

Cantcer

I can’t sir. I am not prone tonight to eat heaving and
Sounding out sloppy syllabic English.
Sisyphus gave blood I heard yesterday
Helping out our cause at the five and dime.
When outnumbered run faster, he remarked
Wiping his brow and tossing aside a bead from his neck.

Colors streaking and bleeding while
Ten Red Crossing Guards walked down hill
To deliver us to a corner. Each and every cell
Even at the  coroners. Then cohorts we went ringing
All their bells dying to laugh at elderly crooks.
Well, dear, didn’t we?
Of Main, 1st, Acme, Arapaho.
Why do you even know – tell me –
What neighborhood streets fired off,
Sizzled by before the funerals
Our ages ranged then arranged from
Dead red four two beats and too, too orange ade.
Sleepless? Well, sleep less.

Circadian arcane rhythms in the nacht muzhik*
Dreamless drum beat Heartland 3-1. Who cares
Anyway, tonight its core cooled just enough
Down to the touch networked our fingers enraptured
Engraved in graves for the book of the year  of the  dead
Picture us happy with Sisyphus’ Stoney strain
Upwards, shooting from frozen dreams
Bodies consumed by frequencies
And waves of electronic singing 180 degree miles away.
Off handedly I followed the paths of railway miles yet
So far only the shofar sings in the deserted diner.
I traded a philosopher’s stone for water sieved
Through the mazes etched in the lime of aquifer stones.
100 year contract for signing away, singing and astray
Your dearest routes and longest Rights of way.

*a Russian peasant