Current medical situation: My numbers look pretty good.
It is becoming very difficult to see where any of the GVHD rash exists.
However, I am still taking substantial doses of Prednisone daily, with
all its concomitant baggage. Numbness in my hands and feet remain a
problem, but don't seem to be worsening. A recalcitrant bronchial cough
plagues me daily, but a chest x-ray last week was clear. My allergies
have been problematic this spring and summer, and fatigue and shortness
of breath remain my constant companions. But, by-and-large, these are
aggravations and inconveniences, and I can live a fairly normal
life...as long as I remain out of the sunlight, stay away from crowds,
don't go near the water, and remain near a bathroom (because of all the
water I must drink). In six days, we travel back to Rochester, MN for
blood tests, consultations, and exams. I hope to pass along good news
from the visit.
I will pass it along, if I can get back into the habit of writing again.
I
cannot explain my recent writing reticence, at least not entirely. More
than a hundred attempts to compose and update or write a poem have been
abandoned in the last few months. Perhaps I fear a prose/poem power
failure. Maybe my muse has lost her moxie. I could be lost in a fog of
mental fatigue, aided and abetted by a chemically-induced
procrastination coma (i.e., I'm too lazy and blame it on the drugs...).
Possibly, I had nothing to talk about...
Yeah, right!
The Four Stages of Mankind — Revisited
There
was a time when I only repeated stories, comments, observations, and
questions for emphasis or to obtain clarity. Now, I often repeat myself
because I simply forget what I said, or what I was told. I am certain I
covered the
Four Stages of Mankind somewhere in previous
communications, but I was reflecting on them this afternoon and here
they are, once again for the first time: Childhood, Adolescence,
Adulthood, and "My, Don't You Look Good!"
I was thinking about
this old joke, because I realized I have been using it to deal with the
unexpected giddiness I've been experiencing when, upon meeting friends,
family, and acquaintances, they have commented: "You look good!" Prior
to my adventures with CML, the phrase just didn't pop up very often in
the course of my life.
Mirrors were never particularly kind to me, but were never brutally unkind until my weight reached the 320+lbs. mark — and that shocking morning that my father was looking back at me —
through the looking glass. The lowest point was after the third
chemotherapy session, while I was in Rochester, MN for evaluation and
testing. Flesh was melting from my bones and my hair was coming out in
clumps. The image in the glass was beginning to resemble the Cryptkeeper
from
Tales From the Crypt. I was molting...and looked revolting. I looked ill. I
looked like a leukemia patient.
Months after my transplant, when folks started to comment that I looked good, I truly thought they were only being kind — trying to cheer me up. I often dissembled and deflected the compliments...using the ratty old
Stages of Mankind
joke. Now, I believe they were truly surprised that I looked so normal.
Obviously, things have improved, although the loss of hair, moon face,
and double chins which have accompanied my Prednisone treatments remain
an unpleasant fact of life. My life hasn't been and will never be
normal,
but acknowledgement that I do not look ill is reassuring and life
reaffirming for me. I may be wry and dry, and juggling the jokes, but I
am pleased as punch you noticed.
Echoes of Joy
Old dolorous
Mick truly died when I was diagnosed with leukemia. I grew up, grim as
bad weather, with a serious soul and a tendency toward the melodramatic.
However, the man who dwells in the CML crucible is no longer that
person. My soul remains serious, but my heart rejoices with each and
every sunrise. I danced close enough to the abyss that death whispered a
tune in my good ear. I don't fear death, but I like living and I don't
believe God is done with me yet. I love life, but I hide it well.
Please
keep in mind that if I am cranky, it just might be the Prednisone
pushing all the wrong buttons. If my face is set like flint, with a dour
caste and tight lips, I may simply be trying devilishly hard not to
cough in your face. If I seem distant and a bit sad, I probably am — because I cannot yet remember why I just walked into the room. If I am not talking, I may be listening — or I might be asleep or adrift on a daydream.
I
have noticed lately that the affairs of the REAL world seem
increasingly distant, softer, dimmer. It sometimes feels as though I am
sitting beside myself, casually watching me be me, or roaming about
while the rented house I inhabit merely rests and awaits my return.
Sometimes I am awake when I dream, and sometimes I dream that I am
awake. Talking to God has become easier, although staying awake long
enough to finish my prayers can be a trial. I can be alone, without
being lonely, and I enjoy simply inhabiting my own head, dusting off old
memories and rejoicing that I can remember them. I am re-reading my
library, as I seem to have forgotten so much about books I read years
ago — that "everything old is new again."
Thank you
for following along on my update. There is so incredibly much I want to
say, to write, to sculpt and paint with words, before I drift away from
this cracked shell — but it seems that, at least for awhile, I have forgotten how to say it. I am working on it, I truly am...
Thanks to all to continue to pray for us and send good thoughts our way.
Good night and God bless,
Mick
