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.
