(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.  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. 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 planted the space between their driveway and Marla's driveway with huge rose bushes that are covered with floppy 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 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 (Marla's husband).  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 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, 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.  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."

(Written by Marla a few days after she transferred to the in-patient hospice)

"3/11/18 Sunday  9:15pm
     Right this moment, I feel ok.  It was another bad night, and a lot of drug changes, and I slept most - 80%? of the day.  But I got to talk to (?) B. and A.O. for a while, and my head feels clearer.  Just realized my one flower arrangement has the cutest little bird on it.  Took pictures.
     I felt so hopless this morning.  But this doctor is a good one.  Talks sense, doesn't contradict himself, very pleasant man.  He said one thing that really helped - 'You're not actively dying right now.'  I really needed to hear that.

     My humidity hose is WAY too short.  Half to do some rearranging so I can sit at this table to write near the windows.
     People keep giving me meds 'to take the edge off the pain' before doing a procedure then not coming back to do the procedure!"

Hello all, this is Diane. I came down from Denver to Albuquerque when Marla had to go through emergency surgery at the beginning of February this year. This time it was to put a trach tube in her airway. It was becoming increasingly more difficult for her to breathe. The doctors felt that the cancer was pushing at her airway, causing it to close off, and this surgery was the only option to keep her alive. Sadly, I arrived after the surgery was completed. I never heard her speak again.

Marla was discharged from that hospital to home. There were no complications, except for pain. Ongoing, steady and then stabbing, blinding pain. About a month after the surgery she asked me to take her to the ER. She simply couldn't take the pain any longer. In the ER, it was decided to admit her to the hospital to undergo a pain evaluation. I believed it was a step to another treatment, and it turned out I was right.

Marla's pain was difficult to manage, especially what she called the pain "spikes". She would be fine and then all of a sudden jerk, turn pale and moan. The spikes were the worst, originating from the left side of her neck, where the cancer was most prevalent. If she took enough of all her medications to control the spikes, then she was incoherent. It wasn't how she wanted to live. The doctors agreed and transferred Marla to an in-patient hospice.

The in-patient hospice doctor had a plan. Marla was weaned from all the pain meds, and they were replaced with methadone. There was a week of adjustment, but for the first time Marla was free of pain. Being free of pain allowed her to start thinking about all the things she could return to. She became restless and bored. She hated being cooped up. She wanted to go home. One nurse commented "We're not used to seeing our patients walking around". Unfortunately, the doctors decided that, although she was vertical, they wouldn't allow her to return home unless someone else was with her there, 24/7. That's were I came in.

Originally the whole plan was for me to come down, take care of Marla's house and cats while she was in the hospital from the surgery, and then return home after a couple of weeks, taking with me Hester, a tiny five pound aging furball who had begun biting and scratching more than usual. I already had Kira, whom I had brought back with me the previous summer. Both were "problem" cats, and Marla's ability to deal with them lessened as the cancer worsened.

As it turned out, there were issues with simply filling prescriptions (all of a sudden Walgreens didn't have Fentanyl to prescribe), then helping Marla keep track of her meds all the while feeling helpless against her onslaught of pain, then taking her to the ER, then the hospital stay for the pain evaluation, then the in-patient hospice. I kept staying for it all, because someone needed to feed the cats. No, that's not right. I stayed to help my friend.

Remember I said "the doctors decided... they wouldn't allow her to return home unless someone else was there with her, 24/7."  That was the exact point when I knew I was in for the long haul. I decided I was that "someone".

So being the honorable Sherpa that I was, I gathered up everything and decided we were going "home". Marla was ecstatic. She talked of dying at home, with a cat in her arms, preferably Renee, which was her favorite at the time. But she also talked about finishing her latest book and then having time to spend as she pleased. Neither of us realized how little time she had left. We went home on March 16. By April 9 Marla would be dead.

During that last time home, Marla and I seemed to connect, better than we ever had. Although she was communicating with a Boogie Board (basically a board that can be written on, then electronically erased to be used over and over), we seemed to understand each other for the most part. It became easier to know what she was going to say before she wrote it out. Except for the pronunciation of Castiel, a character on Supernatural. I just couldn't say it correctly. Marla was very patient, writing out each syllable until I finally got it. I still want to call him Cas-steel. There was lots of hilarity, some crying. It was a good time, overall.

Now I'm sitting in Marla's kitchen, a month after she's gone. Slowly the house and storage unit are being cleared. The cats are confused, but I know they'll eventually adjust. The house will be put up for sale, the same for the car. The cats will come to live with me. A kind and generous relative is tending to the cremains of Marla, her husband and her mother, making sure they are given the reverence due them. And reverence is what I'm feeling as I'm trying to sort through everything. I'm the last person touching Marla's belongings, and I want to treat them with respect. With reverence. Maybe that's why it's taking so long to clear everything out. It's almost a holy activity, as if I'm blessing each item on toward its last journey.

During her stay at the in-patient hospice, Marla started keeping a sporadic journal, continuing it when she came home for the last time. I think she'd want others to know her final words, so I will start to publish them here, notating the date the entry was originally written. I may interject a comment or five in parentheses.

Today, I know I'm dying.

I have good days and bad days, but usually it's parts of days. I did get a shower taken, which requires a lot of prep and then changing of the trach's collar afterwards. This is a 2-person job. The whole thing wiped me out to the point where I could do nothing else. I've felt pain, then taken the meds and felt like my head was swollen and I couldn't keep my eyes open.

Palliative care my ass. I'm always in pain, meds or no meds. If I don't have a headache, my left elbow hurts. Or my G-tube stoma burns. Or I get that spike-in-the-ear sensation that means my meds have worn off. I have not had more than 20 good minutes all day. This isn't living, this is existing.

I'm trying to fight, but I'm overwhelmed. With my physical discomfort, with all the paperwork I have to do to keep insurance and social security. With the few things I hoped I'd be able to do before I'm out of time. With feeling helpless and feeble. With pain and discomfort. With cleaning the inner cannula and coughing up gunk.

Here's the process of going to bed. I do the usual, brush my teeth, wash my face. I've taken the meds, which are supposed to give me 4 hours of relief. I put on my jammies, and lie down on the wedge I have to sleep on now because I can't lay flat. My neck is so stiffened by the cancer I can barely more it enough to nod or shake. I take off my glasses and hearing aide, turn out the light, get myself tucked in and put on the carpal tunnel braces I've slept in for years. Slowly I relax. Then I start coughing. Doesn't matter if I've just cleaned the cannula, doesn't matter if I haven't coughed for hours. The change in position causes gravity to pull down mucus that wasn't in the way before. So I sit up, turn on the light, put on my glasses, take off the wrist braces, and go into the bathroom for another round of washing out the cannula and coughing. Sometimes I cough so hard I poop, so then I have to go to the toilet and clean that up. Maybe spend a half an hour doing all this. Back into bed repeating the process, and I try again. Takes maybe four tries before I finally can breathe easy and relax. By then it's midnight.

I sleep for 2 hours, then wake up either from pain or coughing. I go take pain meds, clean the cannula again, and get back into bed. This repeats again  3 or 4 times during the night. Sometimes I even get 3 hours at a time.

At the 8 a.m. wake-up, I have breakfast. I'm up for an hour maybe, and can't keep my eyes open, so i go back to bed. This is the time I often get 3 consecutive hours. But I don't feel rested. How could anyone after all that?

The doctors say I probably have months to live. When I feel good, I hope they're wrong. Today I honestly wonder if it'll really be that long.

"You're dying of cancer."

Pow. Right between the eyes. I knew this, but it hadn't been put that bluntly before. I like this doctor. I hate sugar-coating and not being told something 'because it will upset you.' Absorbing it is another matter.

I. Am dying. Of cancer. No risk factors for it, can't speak to family tendencies as I'm adopted and will never know anything about my biological father. I've met my birth-mother's family, and no cancer there. Both of my parents - my real parents, the ones who raised me from birth but with whom I share no heredity, died of lung cancer. Both were heavy smokers. Never took a puff in my life - always thought it stank badly so I was never once tempted. But this started with oral cancer, on my tongue.

Of which I am dying. Seriously didn't think this would be what got me. Having had a lifelong weight problem, I would have expected heart disease. But my heart is strong, my lungs too. But I'm still dying. My cancer metastasized, and tumors are wrapping themselves around the base of my skull. Cancer is eating my skin as well, causing oozing lesions on my neck, two so far. I have a tracheostomy tube in to keep my airway from being crushed, and it's permanent. My face now looks like I have the mumps on the left side. The skin cancer is also closing off my left ear canal. First I couldn't get the hearing aid in it, now I'm not sure a toothpick would fit. Not going to try, it's painful to touch it.

What the cancer has taken from me so far: My ability to speak, to eat, to swallow. My hearing in my left ear. Wearing earrings - hurts too much to put the left one in. Earrings have been something I've worn daily since I got them pierced at age 15. They were my trademark. I can't turn my head or nod more than a tiny inch or so. My left shoulder and arm hurt from my neck to my elbow, and it's hard to use that arm. To reach up I have to push it with my right arm. I can't find a comfortable position for my left arm sitting down.

I'm anchored to the pain meds, the canned formula food, and the suction device which my friend Diane has termed the Suctionator. Travel? Hah. Doing a little shopping or going to church requires enough equipment for a sherpa.  My bucket list used to have things like Yellowstone, Yosemite, and Florida on it. Can't do that. Now it has things like getting my house painted in the colors I wanted, getting the clutter cleared out, getting another novel or two finished, and petting kittens.

I have one book I know I can finish if I can get it through the writing group. That will put my output up to nine. I probably can't write another. This makes me so sad. I had a couple dozen books I wanted to write, and they would have been good stories. No one can write them the way I would have, though I have a young friend, age 13, who has decided she wants to study my style and write them. I'll leave her copious notes, but it won't be the same. Still, inspiring a young writer who may be so much greater than I've been would be a good legacy.

Regrets? I have too many. I wish I wasn't so damned introverted. I wish I hadn't been such a TV addict. I wish I traveled better - I got sick on every single vacation I ever took. So now, in what should have been a nice quiet retirement, I get sick again. Permanently. Figures.

Well, hell. I'm not dead yet. So much to do and so little time. But I'm still here, and I'm still me.

My cousin Judy

Once upon a time in the real world, there was a little girl named Judy, who was my cousin. She was two years older than I was, and we lived in the same city. Her mother was my father's sister, so we visited and played together a lot. She had some great toys, completely different than mine at home.

Not long after her fifth birthday, she died of a congenital heart defect that no one knew she had. I was three. I no longer remember what she looked like, but this one incident afterwards is still with me, 61 years later. 

Mom had tried to tell me that Judy was gone forever. I know this though I don't remember the conversation. I'm sure it was down-to-earth and direct, and had something about angels and being in heaven with Jesus, because we were Christian. On a visit to my aunt's house some time after the funeral, this happened. 

I remember Mom and my aunt standing in the living room talking. From my perspective the room was mostly carpet, with grown-up shoes and legs, and a long way up faces. Mom and my aunt stood and murmured to each other, and I wandered down the hall to Judy's bedroom, still trying to fully understand what had happened to her. 

It was no longer her bedroom. The furniture, the pictures on the walls, everything was different. It looked like a grownup's room, like a guest bedroom. Nothing of Judy's was there. Shocked and disturbed, I went back down the hall to a closet. It may have been a coat closet, because I can remember garments hanging. Judy kept some of her toys there, including one I was very fond of playing with. I opened the door, and they were gone. Nothing but the clothes and a recently-vacuumed carpet.

"Where are the toys?" I asked, looking at Mom and my aunt who still stood murmuring together.

All conversation stopped, and grownups stared at me with stunned faces. My aunt froze open-mouthed. Mom looked mortified.Mom took me into another room and tried again to explain that she had died.

I began to cry. Something truly frightening had happened to Judy. Unable to express the sense of loss and fear, I sobbed, "They could have kept her toys." It was the closest I could come to what I felt. It wasn't really the toys.

I realized eventually that my aunt had rid the house of anything pertaining to Judy, including all pictures. Nothing remained of her. They never mentioned her name again. It was as if she had never existed.

Now, 61 years later, I can articulate what I felt then. I realize that people grieve differently, that perhaps the only way my aunt could cope was to try to completely forget Judy's brief life had even happened, but I can't help feeling horror at that. She did exist, she loved and was loved. To just wipe her away still feels wrong.

When I lose someone I love, I cling to their things, to their pictures, to any gifts they've given me. The objects become the material embodiment of memories. My mother's good jewelry, what little she had of it. Her dining room set and rocking chair. Family pictures. Things Dad gave me. Things Uchol gave me. Things we bought on vacations, things from South Korea I added to the house decor. Items like that aren't just stuff, they're fragments of people I can no longer touch. As much as losing people I love hurts me, I want to remember them. I can't understand not wanting to.

So here I am, probably at the end of my own life, and I remember you still, cousin Judy.

It's terminal.

Where to start? Monday, I guess. Got the results of the biopsy and it was the news no one wants to hear. The pain in my neck and shoulder wasn't stiff muscles, nor yet scar tissue hardened by radiation. My cancer has metastasized and is spreading into other organs. Muscles and skin so far. The bump that was biopsied is skin cancer. Chemo can slow it down but nothing can cure it now. The doctor hesitantly estimated I have just months to live.

To say this news is devastating is an understatement. I'm so overwhelmed I don't know what I feel exactly. Grief, rage, terror - I think those are foremost. Grief that I'll never do all the things I was planning to do in retirement. Rage that I had no risk factors for this type of cancer. Terror - well, in spite of being a Christian, in spite of being sure there is a God and an afterlife, there's enough doubt around the edges to be scary. Plus, no one knows for sure what form the afterlife takes. What if I have to pay up for all the crap I've done wrong? What if deep down, I'm not a good person?

What hurts the most is all the stories I'll never write. So many of them. I know I'm not a great writer. I may not even be a good writer - couldn't sell any to a publisher, which is why I self-published. I have read novels that did get published traditionally that I know are written much more poorly than mine. I won't name any, because since some of them were best sellers I know a lot of people would disagree with me, and I don't want to get into a literary argument just now.

Hopefully I'll reunite with the people I love in the afterlife. I have missed them sorely.

Climbing back out

I think that subconsciously I've been in mourning for all the parts of my life cancer took. First and foremost, and the most life-changing, the ability to chew and swallow. For the rest of my life my meals will be formula poured down my feeding tube. No flavor, no enjoyment, no variety. More like taking medicine than eating. Can you think how much of life this just erases? Meeting a friend for coffee or a meal. Having people over for dinner. Eating popcorn at the movies. Devouring the leftover Halloween candy. No coffee in the morning, no wine in the evening. No more use for my kitchen or any of my cooking gadgets, my dishes, my silverware. All the cookbooks and recipes I've collected over the years are now useless. One of the things I was looking forward to doing in retirement was cooking things that took more time, the delicious things my mom used to cook.

I had hoped to be a librarian an even 30 years before retiring. Well, I made it to 29. The ability to speak clearly is the other major thing the cancer took. My once-expressive voice and perfect diction are gone forever. I'm difficult to understand in person, nearly impossible over the phone. No more story-telling, which I loved doing. No more easy conversations with friends. Problems in shops, when the sales person can't figure out what I'm asking. I had an Amazon Echo, commonly called Alexa, that I gave away because it couldn't understand me. Many business phones, the pharmacy for example, use a voice robot. They can't understand me either. Calling a help line for assistance with my computer, or taxes, a credit card, or anything else is useless. I can't drop a bon mot without having to explain it or rephrase it to the point where it's no longer funny.

Less crippling but an extreme nuisance: mucus. Since I can't swallow, a lot of saliva collects in my mouth. Because my tongue no longer reaches to my front teeth, I can't tell it's there until I open my mouth and release the drool. So if I forget to spit onto a tissue before I open my mouth to speak, there's the big gob of spit coming out. Humiliating. Nasal mucus that drips down my throat gets stuck. I can't spit it out or swallow it. I have a suction device to clean it out. It tastes bad and smells bad, and it's really disgusting to look at. I have to clean the device's canister every few days, and the smell is really gagsome.

The scars in my neck from the surgery to get the lymph nodes out are horrendous, as is the scar from the tracheotomy. They may heal up some but they're always going to be very visible. So now I wear a scarf when I go out in public, or a turtleneck. Once I couldn't stand turtlenecks, or anything else tight around my neck, and now it's pretty much necessary. The scar on my arm from the transplant and the scar on my leg where they took skin to patch my arm are ugly, but easier to hide. My friends say the scars aren't noticeable, but I've been standing in checkout lines and heard the people behind me speculating on what caused them.

I've been taking a variety of pain killers for the neck scars, which the radiation hardened until I can barely move my neck. They're extremely painful. It seems to be a trade-off: no pain, but brain fog - or some pain, but a sharper brain. I still don't feel as though I've got all my brains back, and my stamina gets weaker every single day. I don't know if it's just the drugs. I haven't been pushing myself, and the path of least resistance is sitting in front of the TV binge-watching crap. The fact that I don't sleep well is probably also contributing.

Last night, I slept for 2 hours, woke up, took some other pain meds, and slept for another 2 hours after watching a little TV and knitting to relax myself. The second time I woke was at 7:30 this morning. I thought about just staying up or going back to sleep. Since I only had slept 4 hours I opted for the latter, but when I woke up again at 10 I felt groggy. This time I got pissed off. All I wanted to do was just sit, but I made myself get dressed, have breakfast (at noon) and do some things around the house - not much, but a start. Evidently my choice is to give in and just become an invalid, or fight myself and do stuff even though I feel like death warmed over. This is reminding me of the time I had to physically fight off a bully. I looked up at her and thought, "Well, I'm going down, but I'm going to give her something to remember me by." I punched her in the nose as hard as I could, broke her nose, and she ran home calling to her mommy. I was 12 at this time. She never bothered me again.

So this feeling of 'why bother' and lethargy are the bullies now. Time to start punching. If I just sit and let time flow over me, what good am I? I need to do the things that make my life worth living, the things I can still enjoy and do. I haven't worked on my novel for months. I need to knit more. I need to take care of this house, my cats, and myself. I will do these things even if they're hard and I would rather just curl up in a ball and become an invalid.

I think it was Winston Churchill who said, "When you're going through hell, keep going." This is very true advice. If you don't keep going, you stay in hell. There may be nothing beyond but more hell, but you'll never know if you don't go on.

Odd random observation

I noticed something odd in a commercial on TV today. Now usually I DVR my shows so I can fast-forward through them, but sometimes I watch a show live and just ignore them. I've seen that ad many times but never paid attention.

It's an ad for a cancer medicine, and it states right at the beginning that this medicine is for post-menopausal women. However, when it gets to the 'tell your doctor if' portion of the ad, it says to tell your doctor if you're pregnant. Uh, did an ad writer get sloppy or just need a dictionary?

Post-cancer blues

I always figured that I'd have plenty to occupy myself with when I retired. Write more, knit more, embroider again, maybe learn an instrument and take up painting. I hoped I'd have enough money to travel a little. Never in my wildest dreams did I guess I'd be in too much pain to do any of that. And the idea that I would lose such a basic component of life as eating never crossed my mind. But here I am.

Today I have an appointment at the pain management clinic to see if something can be done. I take way to many pain killers, and some are opioids. Those work well for a while, but carry risks. And they stop working. I live my days from dose to dose, crying in pain until they kick in, then feeling groggy and not all there when they do. My writing has ground to a standstill. I distract myself with too much television and not enough action. I've even fallen asleep in front of the TV, sitting up even. I never have done that. I've gotten so weak that a shower forces me to rest for a couple hours.

Now I have time to cook, but no reason to. I have time to putter around the house, but no strength to do it with. I have time to get enough sleep, but can't stay asleep long.

Bedtime is incredibly frustrating. I start going to bed at 10, after taking a dose each of 2 painkillers. Hope springs eternal, so I get into bed and try for an hour to get comfortable. Then I give up, take 2 more painkillers, and sit up with a TV program to distract myself until they kick in. When I get back into bed, this time I can get comfortable enough to sleep. For an hour or two, then I wake up and have to try to get comfortable again. First is the pain in my neck and shoulder. Then I have to work on suctioning the mucus from my throat, which sets off having to blow my nose for a good quarter of an hour. Then the dry-throat cough starts, and I have to get up and rinse my throat with water, which I partially choke on, and suction again. After that I can usually fall asleep, by midnight most nights. I can't just roll over in my sleep. Changing positions requires that I wake up, and usually have to suction, cough, and blow some more.

My dreams have even changed. I don't know if that's from the meds or something else. Gone are the adventure dreams in full color. Now I dream in murky dull almost-gray, and the content is boring. Most of the time now I don't even remember them.

The surgery was May 31. The rehab center made a big difference, and I was mending nicely. Then came the radiation and chemo, and I'm a damn basket case. No strength, no stamina, brain not working very well, and feeling hopeless to get any better. I'm fighting to accept the new normal, but I can't get my feet under me. I feel like I've lost everything that made my life pleasant.

All I can do is hold on and hope things improve. Winston Churchill (I believe) said "When you're going through hell, keep going." Because of course if you don't, then you'll stay in hell. There's no other choice, but damn it's hard.