Help, my narrative is thinning!

Once again, I’m sitting here getting a blood transfusion (thank goodness) and realizing that it has been much too long since I wrote a blog.  I also understand that I have been delaying on purpose; hard things are much less fun to write about.  But, I’m a big girl and I want people to know what is going on.  I need to just tell the truth.  Here is an important lesson that I still haven’t learned perfectly--speak truth and you don’t get yourself into even bigger trouble. 

Ok, so as I wrote in January, I have had some continuing symptoms on the L side of my neck.  I had scans and saw a neurologist with a specialty in oncology.  Both the scan and the MD agreed that there was a tiny tumor on the dura (the outer covering of the spinal cord) of the nerve root of my cervical C2 vertebrae.  The neurologist was worried about the possibility of cancer within the spinal cord (BAD), whereas my oncologist felt strongly that all my issues are occurring outside of the spinal cord (BETTER).  To help answer this interesting question, I had another lumbar puncture (LP).  After a lovely week of a headache with the tiniest lift of my head from horizontal, the LP was entirely normal (GOOD). 

I then had a PET scan and MRI scans of brain, thoracic and lumbar vertebrae.  All in all, the bottom line turned out to be that all scans are a little worse.  There is disease outside of the bones now, and my “easy chemo” isn’t doing its job.  I also have begun to notice some burning pain around my middle on the right side.  First I thought I had a kidney stone like my dear friend Betsy.  Soon enough, it became apparent that this pain too is radicular from destruction of the pedicle of my T12 vertebrae from tumor.  Bottom line, I have just started radiation again to my C2 vertebrae in my neck, and to my T12 thoracic vertebrae.  After 10 days of this, I will start another chemo regimen that hopefully will help me reign in this disease in a little. 

Wait! before I go on, here’s a good story.  I asked people I saw—docs, nurses, everyone—whether I might use my mask from my October radiation.  Everyone suggested that this would be impossible.  I would be scanned on a different scanner, etc, etc.  So idiot that I am, I don’t bring the old mask to my first radiation appointment.  Please understand that I am well aware that our system is a bit broken, and I should have brought the mask anyway, but it is weird to walk around with it in the hospital.  Three big, boisterous techs whisk me back to a different scanner in a different building, make me laugh, and ask me whether I have had radiation previously.  I say that why yes indeed, I just had radiation to the other side of my neck in October.  They look at me and ask me why I haven’t brought my mask.  No, really.  So we made a new one.  They immobilized my mouth so fast with the new mask, they didn’t give me time to go through my Hannibal Lector spiel.

So just as I am beginning to feel good enough to venture out of the house, my friend (?) K sends me an article and a comment written by two friends.  The article is all about chronic sorrow and chronic illness told through the eyes of a narrative therapist.  Ok, what is a narrative therapist?  According to K, this is a therapist who helps people re-story their lives.  Hmmm. I keep reading, and the therapist talks about the potential for disruption of one’s narrative from illness and chronic sorrow.  Ok, the first thing that comes to my mind is that no one is going to F@#$ with my narrative!  But as I continue to think about this, I realize that indeed, my narrative could easily be thinning.  What am I really doing all day?  Right now, I am going for radiation, worrying about pain, sleeping a lot, and worrying some more.  I feel my narrative thinning right now!  My dream for this time was to thicken up my narrative with art and writing and lots of poetry and service.  I know this will come when I get out from under this current treatment, but unless I work on this a little, I fear thinning will occur.

Here ‘s the thing that thickens my soupy narrative the most—poetry.  Throwing myself into someone else’s world and feeling my own expand around me is what poetry does for me.  I can’t thin too much if I keep poetry close and even try my hand a little.  I love the tumble of words over my tongue.  My job now is to think about what I want my  “narrative” to look like now, and thinning is NOT an option.  I am off to our third class in preparation for our Scholars trip to Ireland.  I have to finish the Joyce piece—I feel my narrative thickening as I speak!

Here are a few thickening poems—feel the wonderful words in all of them.  I had to have a Yeats poem in here as he is a muse we will be following in Ireland:

Lake Isle of Innisfree (William Butler Yeats) I will arise and go now, and go to Innisfree,

And a small cabin build there, of clay and wattles made;

Nine bean rows will I have there, a hive for the honey bee,

And live alone in the bee-loud glade.

And I shall have some peace there, for peace comes dropping slow,

Dropping from the veils of the morning to where the cricket sings;

There midnight's all a glimmer, and noon a purple glow,

And evening full of the linnet's wings.

I will arise and go now, for always night and day

I hear lake water lapping with low sounds by the shore;

While I stand on the roadway, or on the pavements gray,

I hear it in the deep heart's core.

St. Francis and the Sow (Galway Kinnell)

The bud

stands for all things,

even those things that don't flower,

for everything flowers, from within, of self-blessing;

though sometimes it is necessary

to reteach a thing its loveliness,

to put a hand on its brow

of the flower

and retell it in words and in touch

it is lovely

until it flowers again from within, of self-blessing;

as St. Francis

put his hand on the creased forehead

of the sow, and told her in words and in touch

blessings of earth on the sow, and the sow

began remembering all down her thick length,

from the earthen snout all the way

through the fodder and slops to the spiritual curl of

the tail,

from the hard spininess spiked out from the spine

down through the great broken heart

to the blue milken dreaminess spurting and shuddering

from the fourteen teats into the fourteen mouths sucking

and blowing beneath them:

the long, perfect loveliness of sow.

Einstein’s Happiest Moment (Richard M. Berlin)

Einstein’s happiest moment

occurred when he realized

a falling man falling

beside a falling apple

could also be described

as an apple and a man at rest

while the world falls around them.

And my happiest moment

occurred when I realized

you were falling for me,

right down to the core, and the rest,

relatively speaking, has flown past

faster than the speed of light.