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Archive for June, 2016|Monthly archive page

The Chaos of Cancer

In Deep Thoughts, Junk Drawer, Real Life, The CANCER on June 6, 2016 at 8:27 am

 

This may just be a kind of stream of consciousness kind of post and make little sense. I do not make much sense lately and the chaos of my mind grows daily. From what I read (and I have read a lot about brain cancer over the last 5 months, if you know me at all you know it is pretty much the biggest duck I have ever had in my life.) This chaos and confusion is pretty much par for the course, and I am not surprised that 6 months in I would be questioning everything I think, do and say.
Steadily losing control of my emotions makes me feel like a raving lunatic on some days. Since I have been known as kind of a volatile person all my life, (Ah…the redheaded stereotype follows you from birth, but in my case, unfortunately, mostly fitting.) but this kind of volatility is different to me, instead of the pretty firework that goes boom and scares the hell out of you then gives you a pretty show for a while, and a few ooooohs and ahhhhhhs, I am the box of whistling chasers that accidentally got set on fire that sends everyone running and jumping and fleeing for their lives. This is why my prayer is for peace. Let my mind be at peace.
Once, years ago, I was meditating by a pond and my eyes were closed, and at the end of the meditation I opened them to a completely mirror-like pond, with one lone duck swimming gently across in front of me, barely making a mark on the water. My thought was: Yes, it looks tranquil, but he is paddling like mad underneath. This is the way I feel most days. Tranquil to those around me, but pandemonium within.
There is so much that adds to this constant confusion besides the fact that the tumors are now invading the space in my brain that controls such things, so many outside influences that I have no control over, and there is the unfortunate reality that because of what is going on inside I must give up more and more control of my life to other people on the outside. This, to a woman who for years has loved her silence and solitude. Independent and intelligent and oh so intolerant of the idiots of the world. Highest on my list of pet peeves is incompetence and injustice. They sometimes are seen side by side. There is also the trust issue. I have been screaming at people for 3 years about various odd maladies I have suffered from while they have sat with tunnel vision on one symptom which I have had for 30+ years–my blood pressure, all the while ignoring my presenting complaint. (Ok, so I inserted an old rant here, thank you, drive through) The only reason I mention it is because it has caused a great deal of trust issues with regards to what we foolishly call Healthcare in America. (Oy, and I digress into politics, not my intention, [insert an emergency cute kitten picture here.]
When I was nursing I was a very good nurse. Without the least bit of conceit of self-aggrandizement, I can honestly say I was one of the best.  So my transition over to the Hospice end of this journey has not run smoothly.  I expect competence from people. I expect it most from professionals and salaried folk, even more so if I believe they should have as much smarts as I do— People with degrees should not be morons. One problem I think is that to the non-discerning eye, outwardly I do not look half bad. Just a fat, bald, slow-moving old woman. No big deal.  But it is in my brain. That organ that pretty much controls everything.  And it boggles my already boggled mind that nurses would not understand that to bombard that frizzled brain with a lot of information at once is like putting water through a sieve.  Changes? Oh my holy Lord. I am lost.  And again I look like a raving lunatic, because I cry, laugh, scream, and stare vacantly at inappropriate times.  I would hope they would know this. But some are fooled by the “wellness” I seem to portray. It is chaos. This week Denise has had to take on any communication between the med staff and our family because my short term memory is almost completely gone, and I just screw up any information they give me.
So this seems to be turning into a kind of physical update, So I will give you a rundown.  I am progressing rapidly it seems to me. I do not have as many “good” days as bad.  A bad day is one that begins with me waking with a horrendous headache. I must get control of this pain early on, or it will wreck the entire day. I had to get over my aversion to taking “mind altering” drugs, and remind myself that this kind and amount of pain medication was meant for people like me, and just TAKE THE PILL.  My eyesight is going, and I will be blind in both eyes soon. As most of you know the tumors affect my language center and I am once again losing that. It has also, this time, affected my speech, and talking is hard. I slur my words, and sometimes cannot find the right one for ages, as my brain spins its multitude of roll-a-decks up there.  The prednisone has taken most, if not all of my muscle mass in my legs. Any strength there comes from prayer. I can walk (with a walker) perhaps 100 feet before the legs begin to wobble and I must sit and recharge.  If I wait or am not near a seat (my walker is one with a seat, so is usually near by) the risk of my legs giving way  is high, and a fall is imminent. I have fallen 4 times so far, but thank God with no real injury. I cannot get off the floor by myself, so I am the infamous “Help, I’ve fallen and I can’t get up!”  Lady.  My last spill was last night, I forgot for a moment that I could not just turn around quickly and spun around to check something and boom there went the knees and I buckled to the ground, the plate in my hand flying to the sky (it did not break) and after some of the pain of the fall subsided I began the scoot on my butt ala crab mode to the bedroom to grab a phone and call in the Calvary.
 There is a big chair in my bedroom that I have found is easiest to get up on and then lift myself up, but this time I could not negotiate it solo.  Eventually Mysi arrived and we got me in the chair, checked for injuries and new bruises. One on the knee. Oh, yea, forgot to say I am now plagued by petechiae  over my arms, and other places. Once again side effect of the prednisone, and I bleed easily. So new bruises seem to just spontaneously appear.
This random little post has now been 3 days in the making. I cannot write long, words fail me. An odd feeling for me, the lady with a head full of words. A house full of beautiful books.  Death has irony as well as chaos.  I am also quickly going blind. My muscles of my legs are all but gone, they cannot lift me without great effort and getting up from any chair is a struggle and sometimes just managing to stand can take me 20 minutes or more.
I hate to appear to be a whiner on her pity pot when I digress into talking about the cancer, or Aunt Jenny talking about her gall bladder operation for the umpthteen time this week,  because that is not my intent or my feelings in all this.  Mainly I just do not want anyone to be surprised when they get the news that I died.  “But she seemed fine yesterday!” And clinically, the whole process, looking from the inside out, is fascinating to me.
It is interesting that you feel yourself dying. Things shutting off or down. Like a long pilot’s  flight checklist. I am flying away.

Excerpt From Autobiography: First Friend

In Chihuahua Emporium Rag, Deep Thoughts on June 2, 2016 at 12:52 pm

Because my eyesight is diminishing so fast, I will take the easy way out and of the requests/suggestions  for a blog post before I go completely blind I will cut and paste (and comment) on an excerpt from my Autobiography.

I began writing my autobiography shortly after my mother died in 1993, as a catharsis really, a way to heal and come to grips with my childhood and all that baggage most of us who have not had great childhoods carry around with us. Now,  23 years later, there is a lot I would change in this book. (for one thing I would finish it)  But perspectives change over the years and you see things so much more clearly if you allow yourself to be honest with yourself. Every life is a story. Mine may be different, but no more important than any other human being’s.

 

[EXCERPT FROM AUTOBIOGRAPHY]

 

My first memory of being alive is sitting in a playpen outside
our house in Oklahoma City. My mother was stooping over her
garden, her dark brown hair tied up in a bright blue kerchief. I
was playing with my favorite squeeze toy–a small pale yellow
rubber duck; turning it, manipulating it, tasting it. I remember
my shoes–white sturdy Buster Browns; scuffed on the toes and tied
with a double knot, for I was prone to remove them at any
opportunity. I was staring at them as I rhythmically raised my
foot and vigorously slammed it down on the un-padded bottom of the
playpen. I was fascinated by the noise, as it reverberated off the
side of the house and the bottom of the playpen shook and vibrated
with each kick.

I glanced up at my mother. She was humming, absent-mindedly;
some sweet innocuous tune–possibly a hymn; and just behind her I
could see a woman crossing the street, a small blonde child perched
on her hip. She stopped and spoke to my mother for a moment. My
mother wiped the dirt from her hands onto her jeans, leaving long
red streaks from the Oklahoma clay down the front of them. She
pointed over to me. The woman brought the child over and sat her
down in my playpen. I began to cry at first, afraid of this new
person, but then the little girl picked up a toy from the floor of
the playpen and began to quietly examine it. I picked up my own
again and resumed my thump-thump-thumping on the bottom of the
playpen. The little girl began to hum. No tune this time as my
mother had been doing; but one note, deep and continuous except for
a short pause occasionally as she caught her breath.
We did not speak, because except for a few simple words like
“Mama” and “Daddy”, neither of us knew how to talk yet. Instead
we played, side by side, the afternoon sun warm and soft on us, and
our mothers gossiped as my mother tended her garden. I know that
I shouldn’t remember that far back, for surely I could not have
been more than two, but I do, and the memory is bright and vibrant
and when I think of it I can smell the flowers and feel the
sunshine on my face.

*****

The little girl in the playpen was Jeannie Rogers. We called
her Jeannie-Rogers, just like that, first and last name, kind of
smooshed together. She was a pretty little girl with blonde hair
and big blue eyes. Her skin was fair and clear, in sharp contrast
to my own red hair, brown eyes and freckled face. She became my
best friend all through childhood. We were considered the
“oddballs” of all the kids on our block, the perfect targets for
extensive teasing and cruel pranks. They now call it being a nerd.
Neither of us was very athletic; I was pretty klutzy and accident-
prone. We were both besieged by a plethora of childhood phobias-
–Jeannie was afraid of all animals, she said– because a squirrel
ran up her back once. I lived in mortal fear of bugs. This alone
was grounds for automatic banishment from normal kid-dom, add to
that Jeannie’s humming and my red hair and chubby-ness and we
couldn’t win. We were excluded from a lot of the group activities
that occurred daily on our street—hide and seek, tag, red rover
and dodge ball; but after awhile we didn’t care; we made our own
fun, and had a sort of pact which included a mutual animosity for
all those kids on the block that spurned us.
Our neighborhood was chock-full of children; at least two in
each house. This was most likely because we lived on the same
street where the elementary school was located. It was a
developing middle class urban area between Oklahoma City and Moore.
The houses were small, 2 or three bedrooms and no more that a
thousand square feet of living space inside. Most of them were
half brick/half painted siding or totally brick. When we lived
there it still felt like we were partly living in the country,
because there were still farmers and ranchers within walking
distance of our house. There were lots of empty lots around to use
for ball games and fort building. Today the area is still
thriving, the houses bought by the same type of people my parents
were 30 years ago—first time home owners trying to own a piece
of the American dream. All the country is gone, though; the
surrounding area has been filled up with fast food restaurants and
shopping malls.

*****

I never saw a school bus till after I left elementary school,
the population of kids in the surrounding neighborhood was enough
to fill the school. We were all roughly the same ages. That is,
for one child in one house, there was a counterpart in another
house down the way. For me, this was Jeannie Rogers.
She always hummed like that. Like she did in the playpen. One
long monotonal note, almost a growl; a sort of guttural humming.
Always when she was concentrating intensely on something. I didn’t
mind the noise. In fact, I spent so much time with her, that I
suppose after a while I just didn’t even hear it anymore; but the
other kids did, and they would tease her about it all the time.
She would be intently drawing a picture, or writing, and sure
enough, it would start: hmmmmmmmmmm…gasp…hmmmmmmmmmm. The
other kids would yell, “JEANNIE! Your motor’s running!” She would
cringe and stop.
I could see the teasing hurt her, so I began to listen for the
humming when we were together and I’d nudge her before the kids had
a chance to yell. She’d look over at me and smile.
Eventually she learned to control it, or maybe she outgrew it,
but anyway it stopped.

*****

I almost always played at Jeannie’s house, my own house was
full with just my siblings and myself, and my father didn’t like
us contributing to the already ear-splitting din by bringing other
kids over to add to the noise after he got home from work.
Besides, he liked to spread out on the floor in front of the T.V.
in his boxer shorts and T-shirt and my mom wouldn’t let him do that
if there was company in the house.
I think Jeannie’s parents preferred us playing at her house,
anyway. My dad and Mr. Rogers didn’t get along. There’s a story
that’s oft repeated in our house of the time Jeannie and I were
arguing about something (I might have hit her, although I don’t
really recall the incident that well) and Mr. Rogers took it upon
himself to protect his young’un and came stomping over to tell my
dad a thing or two. It has to be explained here that Mr. Rogers
was a tall and lanky—truly a “Mr. Rogers” kind of fella (He
reminded me personally of Mr. Green Jeans on Captain Kangaroo).
My father, however, was a large burly rough looking take-no-crap-
offa-nobody guy. I used to think his hands were big enough to
crush somebody’s head in one if he had a mind to, especially when
they came flying over the front seat of the car aimed at the pack
of unruly children ducking in the back seat. Anyhow, Mr. Rogers,
puffed up and ready to kick some butt, confronted my dad in our
back yard where my father sat (apprised by me that a recent fight
with Jeannie had escalated to the point that parents were now
involved), calmly sharpening a machete. My father, it is said,
merely looked up calmly as Mr. Rogers approached, machete gleaming
in the sun and said “Can I help you Bill?” whereas Mr. Rogers,
deflated totally at the sight of my father and the knife, backed
out of the yard saying “No Mr. Burns, can’t say you can.” till he
was safely back in his own yard. This incident didn’t change
anything between Jeannie and I. We made up, and continued to play
together long after, the incident totally forgotten between us; but
not our parents.

*****
I always thought Jeannie’s parents were a little over-
protective, but this too may have been just because mine were
sometimes so grossly neglectful. On the fourth of July, for
example, Jeannie’s dad always brought out an old galvanized steel
bucket filled with water and a large pair of pliers when his girls
lit off firecrackers. When they encountered a “dud” they had to
wait an inordinate amount of time after the thing had failed to go
ka-boom, and then gingerly pick up the offensive firecracker with
the pliers, hold it arms length away, walk over and place it
carefully into the bucket of water, like some junior bomb-squad or
something. The unbelievable thing was, they were only allowed to
light off lady-fingers!

*****

MY family on the other hand, (and in particular, my brothers)
were notorious for dangerous and destructive acts of firework-
sabotage in the neighborhood. My brothers were Black-Cat
demolition experts. They blew up anything that could be even
remotely construed as exciting or interesting if it went BOOM.
They had Roman Candle and pop-bottle rocket wars; aiming the things
at any unsuspecting kid unlucky enough to cross their path. My
brother Paul would light and squeeze lady-fingers between his
fingers. When I asked him what they felt like when they went off,
he said calmly “like a red ant sting.” (My bug-fear kept me from
trying it out, myself) Paul would go out the next morning and
painstakingly gather up all the duds and empty them of their unused
gunpowder, he’d then light the little piles and quickly stomp on
it so it would blow up under the heel of his shoe.
So we would sit and with smirks on our faces watch the goings-
on at the Roger’s House with great amusement. Even today on the
fourth of July when we have a dud, someone will say “Get a bucket!”
and we’ll all bust out laughing.

But Jeannie was my best friend. We had our own games and
activities geared to our “weird kid” mentality. We liked to write
stories. We both were “early readers”… I began at three,
practically as soon as I could turn the pages of a book by myself.
Mrs. Scarberry, a fat, jolly-looking woman who lived right next
door to us had a brand new set of World Book encyclopedias that I
found fascinating. We had a Colliers, but the pictures were better
in the World Book, and it was put together nicer, I thought.
Besides, Mrs. Scarberry was always cooking something…most often
this was cookies, and if I stayed long enough, I usually got the
opportunity to sample a few. I spent many afternoons sitting cross-
legged on her living room rug, some massive volume spread across
my lap, totally engrossed. I would occasionally get up, my finger
carefully marking a big tough word that Nadine (Mrs. Scarberry)
would explain to me. Eventually she got sick of my interruptions
to her kitchen activities, I suppose, and taught me how to use the
dictionary. Then it was katie-bar-the door! I read anything I laid
my hands on, stopping frequently to look up words I didn’t know.
So Jeannie, who shared my love of books and words would sit with
me for hours and make up stories, write them down, and later we’d
reread, edit and modify them depending on our mood that day.
Sometimes we wrote about our dolls, usually the exploits and
escapades of Barbie and Ken. I do not believe Mattel would have
approved of most of our story-lines about their most infamous
couple, even at a young age we both were aware of the difference
between men and women and had the rudiments of sexual activity down
from exposure to various stray cat and dogs in the neighborhood.
Even though Barbie and Ken were far from being anatomically
correct, their love affair was a lot more torrid than the
manufacturer’s intended.

We also wrote about the kids in the
neighborhood. Anyone who had teased us that week were usually
targeted to be killed in a most hideous and painful manner;
sometimes their parents and siblings with them, if we were so
inclined. Occasionally the parents would be spared, only to thank
us for saving the world (and themselves) by ridding it of their
obviously evil, ill-conceived offspring. My particular favorites,
though, were the stories we wrote about a tiny family that lived
in Jeannie’s bottom drawer. We even cleared out the drawer and
filled it with an elaborate array of dollhouse furniture and
“finds” —pretty rocks from the creek, bottle caps, empty spools,
baseball cards. We then acted out the stories before-hand in hours
of “just pretend” brain-storming, and then we wrote them down. The
stories became quite adventurous as we had the family invade other
rooms of the house; wrecking havoc in the kitchen, or in Jeannie’s
sister Myra’s room. Myra was a natural target for our little
family’s adventures–she being a sort of self-appointed leader of
the teasing brigade that terrorized Jeannie and I. Usually our
little family would sabotage her room in some way to cause
embarrassment or minor harm to Myra and her snotty friends. In
actuality this never occurred except in our imaginations as her
mother never let us have free rein of the house. Jeannie’s Mom was
a slightly overweight, kind-faced, jovial woman; who reminded me
of the television Maid Hazel, only with dark hair. She adored her
two daughters, and doted on them. I adored her. She was so
domesticated and sweet; and always had time to stop what she was
doing and listen to our tall tales. I had an awful habit of saying
“Guess what?” before anything I was about to say, and she broke me
of it by replying “Turkey’s Trot.” anytime I started out that way.
Later, she would be Jeannie and I’s Blue bird troop leader, and
she taught us to cook, (“The Number One Direction of every recipe
is WASH YOUR HANDS!”) and do crafts and all sorts of fun things
with us. She always had an idea of something we could do when we
would come in and say pitifully, “We’re BORED!”

*****
She was a neat-nut, her house was spotless and she was always
in a state of perpetual motion trying to keep it that way. I loved
the way Jeannie’s house smelled…like washing powder and fresh
air. My own mother wasn’t the housekeeper Jeannie’s mom was by a
long shot. My mother married my father when she was barely 15.
By the time she was 24 she had already given birth to all five of
us kids. Neither she nor my dad were adequately equipped to keep
pace with our reign of destruction at our house. But it wasn’t
just that we were so unmanageable, it was that she was grossly
unprepared, and my father just expected her to know these things
innately, after all, in his view it was just part of being a woman.
I grew up knowing that the chores of women and men were clearly
designated. Men were revered. Women waited on the men and their
main job was to take care of them, to ease their burden. Later
this idea would screw me up totally as the world changed and I was
suddenly expected to think independently. I wanted to be
independent, but there was always this Donna Reed character
screaming to get out. He didn’t have the capacity to teach his
child bride what he thought she should already know.
Anyway, Jeannie and I would “just pretend” all morning and once
the story we were working on extended past the reality of her
bedroom, we would lay back on the carpet, hands behind our heads
and spend the rest of the afternoon in “what ifs” with Jeannie
playing stenographer for our musings.
At night as I lay in my own bed I would think about our tiny
family’s adventures and happily drift off to sleep. I truly wished
sometimes that I lived in her bottom drawer.