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.
Thursday, January 11, 2018
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.
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!
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.
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.
Wednesday, June 28, 2017
The cancer came back with a vengeance
The doctors are going to try a combo of radiation and chemo on me this time because the cancer in the lymph nodes had changed. They have to be very careful of the radiation because I had it before, and there's a danger of killing tissue and bone in my mouth. The chemo has to work in tandem with the radiation or it wouldn't do anything.
I'm terrified. Afraid of the cancer coming back, afraid that the treatment won't help or will make things worse, afraid of never being able to eat again. Afraid of dying, and afraid of the process that dying would take. Last night I coughed phlegm until I thought I'd choke or drown in it, and slept very little, so of course I'm wondering if I'll ever sleep normally again. I feel like my life has been ruined, and for what? I have no risk factors for this. There is no 'reason' for me to go through this. I can't see what the purpose is.
I couldn't get through this at all without my good friend Diane B. She's been a sister to me through this.
Written in the rehab center:
June 15, 2017, Thursday
2 weeks exactly in the hospital. Went from ICU to SAC, which is out of ICU but still high-risk, due to a stomach infection I picked up and the trach. This is the second day in the rehab center - I keep trying to call it a nursing home - BAD first night but it's getting steadily better. Having occupational therapy, speech therapy, and physical therapy. Don't know yet how long I'll be here before going home. They wand me on the trach until the swelling goes down in my mouth and throat. I'll be on the feeding tube until I can re-learn how to swallow. My speech is really broken and I drool worse than a jowly dog.
That first night here was horrible. Sick, in pain, exhausted, arrived during shift change so nobody knew anything. Room had nothing as to supplies. No one had notes on what to do with me. Hard to get food and meds and basics like washclothes and towels. Since I can't make myself understood very well and they couldn't understand me when I pressed the call button, they didn't come quickly - sometimes not at all. By morning I was sleep-deprived and had gone through three adult diapers from diarrhea and nobody helped. But yesterday went better - day shift knew more - and today is better yet.
No luck on swallowing yet, but I've had a shower with a great deal of assistance, hair washed, had some walks and a very mild beginner workout. Slept better last night though I haven't slept well since the whole thing started. I still need to take the trach cap off and use the humidifier at night, and have to sleep pretty much sitting up.
Eating, talking and tasting will never be normal again,
I'm terrified. Afraid of the cancer coming back, afraid that the treatment won't help or will make things worse, afraid of never being able to eat again. Afraid of dying, and afraid of the process that dying would take. Last night I coughed phlegm until I thought I'd choke or drown in it, and slept very little, so of course I'm wondering if I'll ever sleep normally again. I feel like my life has been ruined, and for what? I have no risk factors for this. There is no 'reason' for me to go through this. I can't see what the purpose is.
I couldn't get through this at all without my good friend Diane B. She's been a sister to me through this.
Written in the rehab center:
June 15, 2017, Thursday
2 weeks exactly in the hospital. Went from ICU to SAC, which is out of ICU but still high-risk, due to a stomach infection I picked up and the trach. This is the second day in the rehab center - I keep trying to call it a nursing home - BAD first night but it's getting steadily better. Having occupational therapy, speech therapy, and physical therapy. Don't know yet how long I'll be here before going home. They wand me on the trach until the swelling goes down in my mouth and throat. I'll be on the feeding tube until I can re-learn how to swallow. My speech is really broken and I drool worse than a jowly dog.
That first night here was horrible. Sick, in pain, exhausted, arrived during shift change so nobody knew anything. Room had nothing as to supplies. No one had notes on what to do with me. Hard to get food and meds and basics like washclothes and towels. Since I can't make myself understood very well and they couldn't understand me when I pressed the call button, they didn't come quickly - sometimes not at all. By morning I was sleep-deprived and had gone through three adult diapers from diarrhea and nobody helped. But yesterday went better - day shift knew more - and today is better yet.
No luck on swallowing yet, but I've had a shower with a great deal of assistance, hair washed, had some walks and a very mild beginner workout. Slept better last night though I haven't slept well since the whole thing started. I still need to take the trach cap off and use the humidifier at night, and have to sleep pretty much sitting up.
Eating, talking and tasting will never be normal again,
Sunday, June 25, 2017
Post-cancer surgery
I had my cancer surgery May 31st, and spent 2 weeks in the hospital, and nearly 2 weeks in rehab. They resectioned my tongue, patched it with a piece of my arm, and then patched the arm with skin off my leg. It's now June 25. The leg is healing enough that the dressing is nearly gone, though the skin is still bright red. The arm looks like Frankenstein and must be covered for quite a while yet. My face and neck are still mostly numb. The doctors had to take a lower front tooth to have room to split my lower jaw open. Now my teeth don't match up right. The patch on my tongue is numb still. I can't swallow yet and will be fed through a tube in my stomach for the foreseeable future, until I can learn to swallow again, if ever. My perfect diction is gone forever, replaced with a garbled speech that requires therapy, and my storytelling days are over.
The tracheotomy tube will come out tomorrow, thank God. I'm hoping the phlegm and coughing subside. I haven't had more than 3 hours sleep at a time between coughing spurts since this began. In addition, something in all this gave me fecal incontinence. That has blessedly eased up. And my type 2 diabetes is now insulin dependent. I've learned to give myself the shots.
Okay, God, I know you think I'm a badass, but enough already.
Wrote this 6 days after surgery:
June 6, Tuesday.
Weird sounds the machines make. In ICU, it sounded like music; cartoon background music from the old Bugs Bunny-type cartoons, and circus music. Yesterday in here one machine sounded like a plover, and I was visioning the seashore for a while because of the hiss of the oxygen machine. Today it sounds like some deranged jungle bird. Wa-hoo, wa-hoo, wa-hoo, then a trill/giggle that is very disturbing.
Saw Rev. Sue this morning, and it was a busy day. They took out the nose feed tube and one of the drainage tubes. The nose feed has been replaced with a stomach feed. Also had a bed bath - finally clean hair! It was disgusting! So good to have it washed. They seem really worried about my blood pressure - it's never been high but evidently now is.
Krys and Diane are going to come by later. I've heard rumors I might be getting a smaller trach tube. I don't know how that will work with all the thick mucus. Trying to cough it up is scary - I feel like I can't get a breath, like the mucus is blocking my air passage.
The tracheotomy tube will come out tomorrow, thank God. I'm hoping the phlegm and coughing subside. I haven't had more than 3 hours sleep at a time between coughing spurts since this began. In addition, something in all this gave me fecal incontinence. That has blessedly eased up. And my type 2 diabetes is now insulin dependent. I've learned to give myself the shots.
Okay, God, I know you think I'm a badass, but enough already.
Wrote this 6 days after surgery:
June 6, Tuesday.
Weird sounds the machines make. In ICU, it sounded like music; cartoon background music from the old Bugs Bunny-type cartoons, and circus music. Yesterday in here one machine sounded like a plover, and I was visioning the seashore for a while because of the hiss of the oxygen machine. Today it sounds like some deranged jungle bird. Wa-hoo, wa-hoo, wa-hoo, then a trill/giggle that is very disturbing.
Saw Rev. Sue this morning, and it was a busy day. They took out the nose feed tube and one of the drainage tubes. The nose feed has been replaced with a stomach feed. Also had a bed bath - finally clean hair! It was disgusting! So good to have it washed. They seem really worried about my blood pressure - it's never been high but evidently now is.
Krys and Diane are going to come by later. I've heard rumors I might be getting a smaller trach tube. I don't know how that will work with all the thick mucus. Trying to cough it up is scary - I feel like I can't get a breath, like the mucus is blocking my air passage.
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