(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.