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Tuesday, May 15, 2018

(Written by Marla after she came home on 3/16/18)

"3/28/18 Wednesday 
     Balance.  Hard to come by.  Finding the right balance to get my neck comfortable on the bed, finding the balance so the mucus doesn't clog me.  Finding the balance between drugs and comfort to stop pain - that part's easier - and maintain my mind.  That's the hard part.  Would be so easy to lie there and just drift, but I don't want to.  This isn't pleasant.  None of this process is.  I don't talk or write much about the tumors.  I can't see what's going on there because it's the back of my neck.  From how they're described, I'm grateful!  They are tunneling holes through my neck into my skull. (And also to the surface of the neck. By the time Marla passed, there was a hole in her neck that could fit at least two golf balls.)  Just writing that gives me shivers.  They're between my brain and my skull.  Not in the actual brain itself.  That's good - that was one of my deepest fears!  I hope I don't have to experience that.
     My absolute 'worst way to die' scenario is being burnt to death.  I have a horror of it (Marla's grandmother lost a sister to a fire when they were both young, perhaps that's where this came from?).  Hope they make sure I'm really dead before they cremate me!  Put a stake thru my heart or something!

     Flowers, glorious, ephemeral, transient flowers.  Intense colors, delicious aromas, all the shapes you could imagine.  I always thought tulips were boring.  So plain, not much scent, just dull little plain janes.  Diane bought a pot because they're her favorite (I told Marla that small carnations are my favorite, which I had bought along with the tulips. It's okay, she confused the two.).  It has been a revelation watching them.  First the buds were barely peeking through the leaves.  They slowly got bigger and peeked up farther.  Being home with them all day, watching them grow and open, has been a lot more entertaining than you'd think.  Lovely pink ones (I do love me some pink!).  They got large, then opened up, and spread.  The clean lines look elegant rather than plain.  Today the petals are starting to spread.  Much more interesting than just glancing at them in the yard twice a day!  And don't compare that to watching grass grow.
     Roses are the Queen of Flowers.  I love the messy, sloppy, floppy ones that are pools of heavenly sweetness (the neighbors have the space between their driveway and Marla's driveway planted with huge rose bushes that are covered with roses this time of year.  Marla must have loved that.).  The haughty ones you get in formal bouquets are beautiful, but somehow cold.  They go well with evening dress, candlelight and silver, and make a lovely sight with the accouterments of wealth.  - This isn't what I want to say.  I can tell I'm drifting badly.  Better stop and try again when I've got more clear."

(This was Marla's last entry.  She died on 4/9/18.  Between this entry and her death, she had started refusing food.  She wanted to be done with it.  The nurse said she could increase the meds so Marla would be more or less asleep when the time came, and Marla agreed.  I think everyone, including Marla, knew the jig was up, except for me.  It shocked me when she left her body.  And yes, I put a cat on her chest and wrapped her arms over it, just like she had wanted.)  
(Written by Marla after she came home on 3/16/18)

"3/26/18
     Journal part.  Hey, read it.  Wish I could type it into my blog.
     I had the regular pain-killer at midnight, on schedule (I had programmed my phone to go off when I needed to give Marla her meds.).  Laid back down and the dratted canula [sic] started wheezing.
     Honestly, I'm afraid to sleep.  Every morning I wake up feeling a bit worse - muzzy headed and like I can't get hold of my body.  Something inside wants to just let go, but I'm not ready.  At all.  In so many ways there aren't pages enough to write them.  But, really, is anyone?
     I've heard so many versions of heaven and afterlife described.  Which one is real?  Are any of them?  The thing I hoped for most was for my departed loved ones to welcome me.  I've dreamed them a couple times, but they ring false.  I've go "You've got to walk that lonesome valley' warring with 'You'll never walk alone' combating in my head. 

     After 2 a.m.  Going to sleep.  I hope I can write more tomorrow."

(Written by Marla after she came home on 3/16/18)

"3/19/18
    3/   /18

     Random thoughts from a dying old woman.  Not as old as I thought I'd get, but okay.  Play the hand you're dealt.  Nothing profound, either.
     People, be nice to old folks.  Seriously.  You have no idea what they have to deal with.  Pain and pain meds, a failing body that won't do what you need - for example, I want to see today's date.  I can't just get up from my chair, swing around, and look.  I have to plan it.  Getting up, takes 3 times before I can if not more.  Then checking the air hose.  Then hobbling weakly over to the calendar.  Looking, then reversing the process.  Takes 5 minutes.  Used to take seconds.  Have to be aware of where my feet are all the time.
     Bathroom?  Even just #1?  10-15 minutes at least.  And now I need help!  It's humiliating.  Even if you're more mobile than I am and able to ambulate more easily, it's hard.
     I came out of the bedroom on my own and that took a good 15 minutes.
     What I came out for was this notebook (I remember this. I found the notebook for her.).  Just to write a stupid ditty that came into my head while I sat looking at my pillow with Castiel's face on it (a character from 'Supernatural'; a good friend had made the pillow for Marla.  Marla never did remember the ditty after coming out of the bedroom.).
     Not even an hour upright and I long to lie down again!

     And like anyone will read a single word I've written.  Basically spent my life on essentially mental masturbation.  People keep telling me I've touched their lives.  God, I hope so!  I feel like I've spent it just enjoying myself and not accomplishing anything.
     Guess I'll go lie down.  More later, I hope.  Want to blog this - can't even touch type anymore.  Left arm won't cooperate.  (Marla lost the use of her left arm as the cancer pressed down on nerves, rendering them useless.)

     It pisses old people off that we can't do what we used to take for granted.  That's why we're cranky.  Not everyone who's feeble-bodied is also feeble-minded.  And your mind comes and goes - sometimes we really are feeble-minded!  Sometimes not."

     (Marla then wrote some personal messages, which have been passed on.)
(Written by Marla after she came home on 3/16/18)

"3/18/18
     I felt like this yesterday morning, but not as bad.
     I was lying there wondering if I should just let go.  It would be easy.

     I always liked things easy.  Wrote about strong women and wished I could be like that.

     Coughed up plugs (dried mucus clots from the lungs) - maybe I was just running out of air?  I should only sleep in 3-hour increments.  I guess there's a reason they keep waking you up in the hospital.

     I watched Uchol die.  It wasn't all pretty like the movies/TV.  He wasn't surrounded by people.  I stood in the corner and wept.  He was unconscious.  When he went, everything came out of him - pee, poop, vomit.  No dignity.  The nurses cleaned him off, told me not to look, and tucked him in so it looked like he was asleep.
     I know I'm stinking - not cleaned properly - same underwear since these pants went on.  Can't get my butt clean - more keeps leaking while I wash.
     Have to wait on the shower - heck, that may be the project of the day! (A CNA came the next day and assisted Marla with a shower).

     Dad was dead when I got there that day.  The last thing I saw him do was a grin and a thumbs up in his hospital bed as I left the day before.  From what Mom said it was a typical (name withheld) drama scene.  Mom got her and others to leave, so it was just her and Dad.  She said that when the others left, he took a deep sigh - and relaxed.  Not long after he was gone.  Maybe it just being between them was what they both wanted.  I'd have just been in the way.
     I drove to the hosp. to find him gone and Mom had left for the house.  So I dealt with it alone, nurses in the hall.  Then went home.  It wasn't him anymore but I needed to see that.  At home, Mom and I just went into each other's arms, hugged and wept.  But not for long.  Dad was the snuggly one.  Weren't we an odd little family of solitaries!
     Mom - that was the worst.  4 hours away and a phone call.  I feel like (name withheld, not me) stole her last hours from me. (I was with Marla's mother about 6 hours before she passed.  We all honestly didn't think she would pass so quickly.  I asked her mother if I should call Marla.  Her mother said no, she didn't want to 'bother' Marla.  I abided by her mother's decision.  Marla never held that against me.  She knew her mother's reasons were her own.  Marla wouldn't have made it from Albuquerque to El Paso in time, anyway.)

     Cliché catch-phrase of my generation.  'What a long strange trip it's been.'

     Would you believe someone gave Diane a check-sheet of what to expect in a dying cancer patient?
     I've never done a thing in my life that would follow a check-sheet.  Not from baby development on!  Why would I start now?  Of course, they don't know that."
(Written by Marla while at the in-patient hospice)

"3/15/18
     Thursday.  Called for assist.  Tech runs in, doesn't seem to understand what I wrote or printed out, does nothing useful, runs out saying 'If you need anything, call me.'
      Uh, isn't that what I just did?  Chicky-boo?
     Anyway, cannula wasn't much clogged.  Just did it myself.
     Put on p.j.s because the ones I had on were getting a bit soiled with coughing and that was all I had left.  As per usual, things I had laid out to use are gone.  I had a nice stack of clean washcloths - gone.  They sneak in like vultures.  I can see why people wander off from these places.  At least they leave my personal stuff - just take the supplies they're supposed to provide.
     This is definitely the last stop on the road to death.  If I don't go home tomorrow, I may have to make a run for it, Hah hah.
     And the cannula brush is gone.  This is ridiculous.

     Funny bit at start"
(Written by Marla while at the in-patient hospice)

"Blog post draft.  March 14 2018 Wednesday

     In Orson Scott Card's 'Alvin Maker' series there's a woman who can see everyone's future.  Since future's aren't fixed, this is perceived as paths that come and go, like glittering fireflies.  As a person gets close to their death, the points and paths flicker out and converge until they smash into one.  Rather, I think, like the end of the universe theory where everything is swept into one last black hole.
     I'm feeling like this.  When I first heard this cancer was terminal, when my possible years became months, I started planning.  'OK, this is out but maybe I can still do that." sort of thing.  As more and more bits keep getting closed off and my options continue to shrink and vanish, I keep rearranging and thinking, well I can still do this other thing."  But it seems like the more I do that, the more options get closed off.  So what do I do?  Stop making plans?  Roll over and just die?
     Don't want to.  If I do that, might as well be dead already.  I may not have much time, but I do still have some.  So I'm sitting here roughing out a blog post - it'll need major revision of course - hoping I can even read it later - when I really would like to lie down.  Those drugs are serious.  'This is your handwriting on drugs.'  Yikes.  Dizzy as all get out.

3/14/18 Wednesday
     Got some hopefully productive wheels in motion this morning about finding me a way home.  Predictably, a different group (OK, one person) came in to contradict it all later.  This seems to be the pattern.  Get something I could live with in motion, then yank it out from under me.  These assorted hospice groups should wear signs so we can tell who's who.  They seem to circle like sharks.
     To mix my metaphors, right now I feel like I'm in the eye of a hurricane.  Figuring out who to trust is damn near impossible.  Sharknado 14 - the hospice care inferno.  (Marla loved the Sharknado series!)  To dump all this on someone who's already dying, to twist and turn and add mountains of paperwork - God, I don't know how it could possibly make a hard, hard situation so much worse.  And for what?  Money?  I'm not wealthy.  I was worried about retirement income.  What do they think they're going to get here?  It's beyond me.

     Probably needs revision."
(Written by Marla while at the in-patient hospice)

     "March 13, 2018 if it's Tuesday.  The switch to the methadone is making me sleep like crazy.  I'm praying it's working and I can go home on Friday.
     Diane took a lot of things home so we don't have a sherpa caravan when we do go - of course, right when I start feeling like I can stay up for 5 minutes straight.  She and the church are slap-dashing the horse so the social worker will feel like I'll be safe there and not a high danger of fall risk.
     Dear Lord, thank you so much for these people!  I don't know what I could possibly have done to deserve them.
     I'm going to rough-draft some blog posts and my writing tips book until I can get at my computer again.  I hope I can read my writing. Out of practice and shaky from the meds.  Can't seem to focus my eyes quite right either. (The cancer was pushing one eye out, causing Marla's sight to become unfocused.)  I think it's morning but I may be wrong here.
     Nope, it's evening. Getting dark out.

     Bearded Iris, my favorite flower
          Not to be confused with the smaller, leaner Dutch iris - those those [sic] are nice too.  No, I love the big, floppy, ruffled, floozies with all the sparkle in the petals, ruffled and frilly and floaty, flirting shamelessly all their textures and colors!  And the colors are unending!  Broze [sic], pale pink, white, every shade of purple, multicolored, beruffled and bedazzled.  They even come in black.  Some white edged in other colors, some with one color on top and another below, with thick tongues of sparkling yellow plush to lead a bee to the pollen within.  They in sizes from dwarf to giant, gleaming with color and enticing with all their tossing ruffles and flounces.  Irresistable.[sic]  You could fill a yard with them and not have 2 alike in color.  They're magnificent.  But sadly, all the flower shops ever use are the Dutch iris, a nice prim little flower, but all the same like school-girls lined up in their uniforms.  Those must keep better.  I hope when the iris bloom at the botanical garden that I can go.

     Want to rewrite."