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Thursday, February 22, 2018

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.

Friday, February 16, 2018

"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.

Friday, January 26, 2018

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.

Thursday, January 25, 2018

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.

Monday, January 15, 2018

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.

Sunday, January 14, 2018

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?

Thursday, January 11, 2018

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.