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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.

Tuesday, December 5, 2017

Food

"Forget about food," the doctor said.

How? While the formula I pour down my feeding tube nourishes me and keeps me from feeling hungry, how do you forget about something so integral to life? All our celebrations involve special food. We all have our comfort foods and favorites. How do you forget about something that has always been as constant and ever present? It's like trying to forget about breathing.

My tongue, thanks to cancer, is no longer long enough to reach my front teeth, and its motion is very limited. I can still taste, but I can no longer move food around in my mouth to chew. I can't swallow, either. Not to mention the post-nasal drip, a constant that most of the time people don't even notice and swallow without being aware of it, now must be suctioned out of my throat with a device. It's disgusting.

I keep trying to swallow liquids, but I can't get an entire mouthful down. Some of it goes down, the rest I have to spit into a cup. Or the sink. Yesterday, tired of the constant bad taste in my mouth from the sinuses, I ate a small Reese's Peanut-Butter Cup left from Halloween candy. They're my favorite. I stood over the sink, taking small nibbles off the candy that would have been bite-sized to a normal person, moving it around with my finger to be chewed and tasted. Then spat into the sink. It tasted heavenly, but I sure wouldn't want anyone to watch me while I did that.

I don't mind being around people who are eating, because at least I can smell the food. I can remember what things tasted like and imagine eating them again. I frequently dream about eating.

So, no special birthday, Thanksgiving, or Christmas treats. No meeting friends for a meal or coffee. So much is gone from my life. I had always looked forward to retirement, and one of the things I planned to do was cook more. Never in my wildest dreams did I think I'd lose the ability to eat.

Thursday, November 23, 2017

Thanksgiving

This is my second Thanksgiving without my Mom or my husband, and my first after cancer surgery. Last year I made myself turkey and dressing, sweet potatoes and mashed potatoes, and had olives and candied beets. Pumpkin AND pecan pie for dessert, though I didn't eat them at the same time. I watched some movies, and was perfectly content.

This year, due to a tumor on my tongue requiring the removal of most of said tongue, I can't even eat. Today I feel lonely and bored, and can't seem to snap myself out of it. I had offers to join others' celebrations, but that would have made me feel worse.

Plus, the side of my neck and shoulder where they took the lymph nodes out is extremely painful, even through the pain meds. I'm going for a massage as soon as I can. Meantime, even though I've got a hundred things I'd like to do, I can't do much but lie around the house. TV distracts me a bit, but I have trouble concentrating on even that through this pain.

Trying to come up with some things I'm thankful for: friends, my cats, my home, that the disability came through. The fact that I got 10 novels self-published before this crap hit me. The hope that the pain can be solved and I can write some more, and do some things. I always looked forward to retirement, wanting to resurrect some hobbies and interests I didn't have time to pursue while working. I never counted on being in so much pain I couldn't do them. Or not being able to eat. Now I've got time to really cook, and a nice kitchen, and no reason at all to cook. Unless I find some recipes for cat food!

Thursday, October 12, 2017

A favorite Christmas recipe

Grandma Smith's Date Pudding
We always had this at Christmas. Warning: it's very sweet, so a small serving goes a long way. We put whipped cream on it.

First make the syrup:
1 1/3 cup brown sugar
1 1/3 cup hot water.
Put these into a pan and simmer slowly while mixing the following ingredients.

1 cup sugar
1 cup flour
1 tsp baking powder
salt
1 cup chopped dates
1/2 cup chopped nuts
1 cup milk.
This will be a thin batter. Pour batter into pan of hot syrup and bake at 350 degrees until done. Mom always used a sheet cake pan.

Since I can no long eat, I think I'll put some of my favorite recipes up here. 

Thursday, July 6, 2017

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.