(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.