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.

One person's keepsakes

My mother had an older sister, Louise, who died at the age of 12. Mom was 9 at the time. She kept her sister's doll the rest of her life, and now I have it. No one in the younger generation - meaning my cousins' grown children - wants it. I can understand why, after thinking about it. I only keep it because of Mom. No one wants a keepsake from a great-aunt they never met.

This reminded me of a story a friend told me about an older woman she was friends with, who had a house full of keepsakes and a story for every one. When she died, her sisters threw out all her 'trash.'

I've given away a few keepsakes of mine already. While one will be kept by the friend I gave it to, the two I gave to a different friend's children have already no doubt been broken, lost, or tossed. I've learned my lesson. I'll give away no more of my keepsakes. They are worthless and meaningless to anyone but me. If they all wind up in a landfill when I'm gone, so be it.

A keepsake is an object with memories attached, and therefore is meaningless to anyone who doesn't have the memories. When my favorite earrings all got stolen, that was what hurt the worst. They weren't just jewelry to me. They were favorites because they were also memories, of Christmases and birthdays, vacations and friends. If I just buy a pair of earrings, I rarely wear them. If they were given to me, then they carry a memory of that person. If I buy them on vacation, they carry the memory of that good time. My stolen earrings couldn't be replaced for that reason, though I bought a few new pair after they were gone. Meaningless earrings, that sit in my jewelry box, and the ones I wear are ones I bought while out having fun with friends.

"It's just stuff" has become the rallying cry of the minimalist movement. Some of it is. Just stuff I can toss or give away with no problem. But the keepsakes are so much more than the object itself. Maybe I'm a sentimentalist. Maybe I cling to things too much. Maybe I'm odd in that I attach memories to physical objects. It doesn't matter. This is part of who I am. I'll continue to treasure my keepsakes, knowing that no one else will, and that when I'm dead they'll be trash. And here is part of the human condition: you're not remembered very long when you're gone. If you have kids and grandkids, you'll be remembered until they're gone. Then, for anyone not famous, it's as if you never existed on this earth. Nearly all of us pass unsung and forgotten, and that's the way it is. Even the famous are forgotten after a few generations. All our struggles, all our experiences, all our hopes and dreams and fears, just gone.

I had a cousin named Judy who was a couple years older than me. We played together a lot when I was a toddler. She died unexpectedly at the age of five. I was three. Her parents threw out everything she owned and every picture of her, and declared her name would never again be spoken. That upset me deeply, though I had no means of articulating it at the time. On one level, I never looked at that aunt and uncle the same way again. They just wiped her brief life away as though she had never existed, and I have never forgotten that, or her. Maybe that's why I feel the way I do about keepsakes. It upsets me down to my core that we are so easily forgotten, even though I realize that this is the norm, part of the human condition. Our lives are brief and soon lost to memory.

Someday is a lie.

Nothing like knowing for sure and certain that your days are numbered to give you focus. This oral cancer part 2 has no good outcomes. Part 1 gave me a 41% chance of survival. I thought that the fact that I had no risk factors for that kind of cancer gave me an edge. Wrong! Now I have a 28% chance of survival. Best case, I lose more of my tongue but can still talk and eat, and have to undergo more radiation. Worst case of course is death.

My priorities have shaken down. If I could have 5 more years of life and not have to work, I could get 10-20 more books written (using the 'novel in 3 months' method. I've already chosen which ones come first). Finding a cover artist (I'm indie so there's no publisher doing it for me) is a holdup; I've got two books finished & ready, but my dazzlingly brilliant and very affordable cover artist, Donna Casey, lost her own battle with cancer. My attempts at covers look pathetic next to hers. So, the hunt is on.

I also need to save up $2K to get a tombstone ready. My husband has already passed on. His ashes are in an urn that is still sitting in my closet. I want to get my own cremation planned and paid for. The people who love me can throw whatever memorial they choose. Funerals are for the living, not the dead. I won't be there, so I want them to do whatever gives them comfort.

Someday I was going to travel, someday I would write a hundred novels, someday I would find true love. Nope.

There is no someday. You want to do something, do it now.

Uchol's death

It's been nearly 3 months since Uchol died. I'm still figuratively bleeding, but it's no longer a hemorrhage. I can write about it now.

The last few weeks, he'd been acting oddly. I just thought he was sick, I didn't know it was serious. He was always weak and tired. Every few days he'd look at me with fear in his eyes and say, "I may have to go to the emergency room today." But he wouldn't.

I was really worried about him that last week, because he had me go shopping alone, and didn't want to go anywhere. He had a doctor appointment coming up and I was hoping to get some answers. Uchol didn't like me to go into the doctor's office with him - he had me sit out in the waiting room. He didn't like that I interrupted him talking to the doctor. I never thought I was interrupting, just asking questions. But I humored him.

Saturday, August 1, we had been intending to go to the local science fiction convention. Uchol didn't feel up to it, and I didn't want to go alone. About 10 in the morning, he said he had to go to the emergency room and called an ambulance. After he left, I did a little puttering around the house and ate some breakfast. Then I went on to UNM hospital, taking his phone and Kindle. He was upset that I hadn't followed the ambulance, but frankly, he's gone to the hospital in one so often it felt kind of routine. I took knitting and something to read, and settled down for the day.

Eventually I had to get food. When I came back, Uchol was in deep conversation with what was probably a male nurse, who turned to me and said that this was just a routine question, but had we talked about whether or not he wanted to be on life support. I gave the nurse a hard look, and he quickly said that they asked this of everyone who came into the emergency room. I knew this was not true. They had never mentioned this before, and we'd been in an emergency room about 10 times.

Later after the nurse left, Uchol started trying to teach me how to use his fancy cell phone. He never wanted me to mess with it before. I just told him, "Oh, sweetie, I'll never remember this. Let's do it some other time."

At around 6 pm I said, "Could I go home? I'm pretty tired." We kissed goodbye and I went home.

How I wish I had just stayed the night. I never saw him conscious again.

The next morning at 5 am, I got a call from the hospital telling me to get there as quickly as I could. So I did. They had Uchol sedated and intubated, and said he was bleeding in his abdomen and they were going to take him down for some tests, to see if they could stop the bleeding. I stayed holding his hand until they came to get him, then went to get some coffee. I got the coffee and sat down outside, and my phone rang. I don't remember what they said exactly but it was to the effect that something had gone horribly wrong. I ran for the room, and got there as the medics were wheeling him back in, doing CPR. Let me tell you, in real life it's a hell of a lot more violent than when you see it in a TV show. I got out of the way and collapsed into a chair by the wall, and just waited, crying, in horror. He still had the tubes in his throat, and blood came out his mouth around them every time the nurse pumped his chest.

They got his heart started again, and warned me that he'd have broken ribs from the CPR, that people always did. I asked what happened, and they said that on the way to the test, his blood pressure just crashed and his heart stopped.

I had just enough time to relax, thinking he'd be okay, when his heart stopped again. They started CPR again, harder this time, and more blood came out his mouth. At this point one of the doctors asked me, "How long ago did his doctor tell him he had three months left to live because of his liver?"

Stunned, I gaped at him and said "What?" The doctor looked at my horrified face and went away.

They kept going on the CPR for a long time while I stood, sobbing. I knew it wasn't going to do any good. Finally I went over and said to the doctor, "You're not going to get him back this time, are you?" He said, "No." After a few minutes he said, "You can stop this." So I told them to stop, then wedged myself into a corner and sobbed. Behind me, they disconnected everything and gave him medication so that he wouldn't be in any pain at the end.

Later nurses came in and cleaned him up so I could say goodbye.

Dear Tribble, 1998-2014, rest in peace.

Another sweet cat has crossed the Rainbow Bridge, and a gentle, loving soul has left us. Yes, I do firmly believe animals have souls. I have looked into too many pairs of feline eyes to doubt that.

Tribble was a quiet cat, a real snuggler with a nice loud purr. Back when he shared my bed instead of my husband, he liked best to have his head on my pillow so he could purr into my face. I had to hold his paws to keep him from making bread on my neck because that hurt.

He never met a stranger. He'd come greet anyone who came into my home, and if you'd pet him or give him a treat, he was your friend. He asked no more - but sometimes he demanded. My husband got himself trained! He started giving treats, and at last every time he'd go into the kitchen, Tribble would follow and stare at him with the unblinking intensity of a hunter. If treats did not appear, he's meow in a loud, harsh, tomcat voice - the only time he meowed at all.

I heard him hiss once, in his entire life. Hester smacked him for no reason one time when he was just walking by her, and he gave her a look that said, "What's your problem, bitch?" and hissed at her. And kept walking. He was one laid back cat.

Tribble had me trained too, but then I'm easy that way. If, when he was in my lap, I spent too long knitting, he'd grab my wrist to make me pet him. I never minded. Sometimes he'd grab with both paws. He was a love to cuddle.

Of the litter of three tiny kittens I adopted in El Paso in 1998, one is left - Kira. Chakotay died of cancer at age 9, and now Tribble has passed of simple old age. His loving kitty body just wore out.

I hope they have nice laps wherever he is, and I hope I get all my cats back when I cross that bridge. I couldn't find the source of this quote, but my friend Krys told me this: Those of us who share our hearts and lives with creatures whose lifespans are so much shorter than ours have great courage.

I can't imagine living without cats.

My cousin Rocky

My cousin Rocky is facing terminal cancer, and with his usual wry humor has started a blog titled Terminal Velocity. What he calls his ramblings could easily be collected into a book. They're very good. The situation with him breaks my heart. My handsome younger cousin, after having disfiguring surgery on his face to try to save his life, had the cancer recur before they finished reconstructing his jaw. They'll do no more reconstruction, so he'll spend this last year unable to swallow let alone eat. He's relearning how to talk. He has no teeth, a partial jaw, no salivary glands, no soft palate. When he vomits - which is often - it comes out his nose as well. Can't be helped. Has a tracheotomy.

I was glad he at least still can ride his motorcycle, though his leg is weak - evidently that's where they took the bone to remake his jaw. He has to be more careful, but can still do it. He was a classic extrovert. Lived his life to the hilt with no regrets and beholden to no one.

What brought him down? Smoking.

After my Dad died of the side effects of smoking, I wanted to hire a plane and bomb all tobacco farms out of existence. Now, I look at young people smoking and want to slap them. Dad started before the tobacco companies admitted their product was poisonous. Now we all know. So why do people start smoking? It makes you stink, it makes you wrinkle young, it damages your health and might even kill you. Oooh, hold me back.

A lot are going with those electronic cigarettes in the mistaken notion that they're safer. Yeah, just like tanning beds are 'safer' than the sun. Tanning beds still give you melanoma, and electronic cigarettes are still dispensing poisons, toxins, and carcinogens deep into your body. The only safe suntan is a spray-on tan, and the only safe cigarette is a candy one.

To those who say, well, you've got to die of something, I say, But why pick that? It takes ages, it's expensive, and chemo, radiation, and surgery are very bad experiences. Painful, sickening, horrendous experiences that take away parts of your life you loved.

Rocky, age 18.

                                                Rocky, age 51, after smoking for decades.

Is this really the death you would choose? Because you can choose not to.

SELF-IMAGE BY THE NUMBERS

A woman died the other day,

Starved to death for beauty’s sake.

Dead is worse than fat, I’d say,

And I’ve been fat since I was eight.

Step up on that magic box,

Step into a paradox.

If the number’s up your heart is down;

Hey, we can’t all weigh a hundred pounds.

There’s compact cars and Cadillacs,

Siberian tigers and domestic cats.

Even flowers come dainty or bold,

Why must women be of one mold?

Self-image by the numbers,

Even now the myth endures:

You’ll never be too rich or thin,

And only beauties are allowed to win.

                    Old poem, written when anorexia claimed the life of Karen Carpenter, one of my favorite singers. With the current War on Fat People I think it's relevant again. I support Health at Every Size, and am against body snarking - though I'll admit it's a hard habit to break. I'm inspired by Ragen Chastain's blog Dances With Fat. Check it out.

Life can turn on a dime

People think they understand how fragile life is, but I don't think they really get it until it's pushed into their face. I sure didn't.

My husband just went to having a pain in his shoulder that we both assumed was a pulled muscle (had that before) to fighting for his life because the abscess that was causing the pain had sent bacteria and toxins throughout his entire body. He was in ICU for a week, and will probably be in a regular room for at least another one.

I went from having a raw patch on my tongue that I assumed was from stress (had that before)to a diagnosis of oral cancer. As it's related to human papilloma virus and not tobacco, I've got a pretty good prognosis. I'll know more when I see the oncologist next week.

When my father died, it was a long, drawn-out process. But I have a friend who was sitting in the living room talking to her mom, who suddenly put her hand over her heart, said "Oh, my," and was gone.

It's impossible to seriously live each moment as if it were your last. We have jobs to go to, bills to pay, and every couple and family has disagreements. I'd rather be lying on a beach drinking Pacifico with lime than going to work most days. Even though I nearly lost my husband, he still has habits that grate on my nerves. Some people have a brush with death and are completely different people, others of us just carry on in the same old way.

But maybe just a bit more aware that our lives are like soap bubbles.