Some how, I've managed to have a good day.... feeling happy, feeling good (sort of), mood is good... I'm pleasantly surprised.
Every now and then, I forget about my condition and my job and things seem nice. It doesn't happen often, although most people just think I'm so strong.
I'm really not all that strong, just prefer to live each day....
It's gotten easier with time, not to obsess on my disease every day, although it's tough when I take that cytoxan every morning...
I'm grateful today for feeling well and feeling mentally pretty normal.....
Peace
Monday, November 15, 2010
Thursday, November 11, 2010
again with the sleeplessness
So OK, here I am again. Stress is not the word to use that describes how I feel lately.
So, I have clenched teeth which has caused me severe jaw pain, my shoulders seem permanently held upward towards my neck. My shoulders and neck are stiff as a board.
I'm mentally stressed. All these things have resulted in my ABSOLUTELY HORRIBLE INSOMNIA.
I really have no more solutions to try... tomorrow I need to arise at 5:30 or 5:45 and drive 63 miles to my office and sit and be stressed to the absolute limit for 8 hours, only to repeat the 63 mile drive home to my place of bliss, the family home.
I must admit. I feel like this is my fault... the sane and educated me says this is bullshit.. this is not my fault.. It's a shame I've been pre-programed by my genes to be high strung (to be honest, I really don't know what this means, but I think it's me) and this really sux. I try so hard to get relaxed and it just doesn't happen naturally for me. I can't remember when I slept easily. Since High School, I've been plagued by this insomnia, my disease, the ever present ovarian cancer that will kill me, makes it harder and harder to relax and sleep.
It's very hard trying to keep up a good face when you know you have something that will kill you eventually. 5 years is what the research shows for a recurrent ovarian cancer patient. Although I try to stat positive since there are outliers to everything, it's hard when you don't see any particular improvement in your disease process. How do you justify, somethings are better and somethings are worse, as "stable"? But that's what they call it for "chronic" cancer patients. Very few people know my reality. I try not to utter the words 5 year prognosis to anyone. But now and then it slips out. It slips out daily in my mind. This may be having an impact on that constant inability to relax, sore muscles from the arm pits up, headaches, jaw clenching and jaw pain... gee do you think?
I'm gonna give it another try at sleep.... cannabis seems to have helped me feel in the mood to sleep, but jaw is still clenching... we shall see.
Peace.
So, I have clenched teeth which has caused me severe jaw pain, my shoulders seem permanently held upward towards my neck. My shoulders and neck are stiff as a board.
I'm mentally stressed. All these things have resulted in my ABSOLUTELY HORRIBLE INSOMNIA.
I really have no more solutions to try... tomorrow I need to arise at 5:30 or 5:45 and drive 63 miles to my office and sit and be stressed to the absolute limit for 8 hours, only to repeat the 63 mile drive home to my place of bliss, the family home.
I must admit. I feel like this is my fault... the sane and educated me says this is bullshit.. this is not my fault.. It's a shame I've been pre-programed by my genes to be high strung (to be honest, I really don't know what this means, but I think it's me) and this really sux. I try so hard to get relaxed and it just doesn't happen naturally for me. I can't remember when I slept easily. Since High School, I've been plagued by this insomnia, my disease, the ever present ovarian cancer that will kill me, makes it harder and harder to relax and sleep.
It's very hard trying to keep up a good face when you know you have something that will kill you eventually. 5 years is what the research shows for a recurrent ovarian cancer patient. Although I try to stat positive since there are outliers to everything, it's hard when you don't see any particular improvement in your disease process. How do you justify, somethings are better and somethings are worse, as "stable"? But that's what they call it for "chronic" cancer patients. Very few people know my reality. I try not to utter the words 5 year prognosis to anyone. But now and then it slips out. It slips out daily in my mind. This may be having an impact on that constant inability to relax, sore muscles from the arm pits up, headaches, jaw clenching and jaw pain... gee do you think?
I'm gonna give it another try at sleep.... cannabis seems to have helped me feel in the mood to sleep, but jaw is still clenching... we shall see.
Peace.
Sunday, October 31, 2010
Oh Well
Happy Halloween.
This year I'm dressing up as someone without cancer.
Actually, I don't have to dress up at all. Everyone tells me I look fantastic.... who'd know I had ovarian cancer.
Still on chemo-lite, which is a good thing I suppose... retiring soon.. should be a nice thing, but I worry... what if it's not a good thing. What if I go crazy with boredom and start obsessing on my disease like so many other people I've met.
I'm trying to be prepared, working as a volunteer at the Maureen Fund, volunteering at Gilda's club... several people have suggested other volunteerism that I think about. Kaleidoscope of Hope sounds great. A really radical group of Ovarian Cancer survivors, I have to check them out.
Today, I tried, as usual to be a partner to my husband as we work on remodeling our kitchen. It was simple stuff. Moistening the walls and removing a thin paper and glue from previous wall paper. Well, after about 1 hour, my left kidney stent went spazoid.. had to take some ultram and then sit for the rest of the afternoon. I'm a strong woman, always been able to lift, pull, drag, work right along side my dear husband.... this is hard for me... to watch my abilities slowly go away.
I hope I have to strength to stay focused after I retire to stay in a good place with plans and schedules that I don't blow off. It's soooo easy to get depressed and just sleep... that's my favorite thing to do. Sleep and dream... a lovely place to be.....sometimes I don't want to get up and face the reality that is my life.
Oh well, as Gilda Radner would say in her persona of Rosanne Rosannadanna, "it's always something." This is my life, whether I like it or not... I gotta keep the ball rolling in my favor....
Peace.
This year I'm dressing up as someone without cancer.
Actually, I don't have to dress up at all. Everyone tells me I look fantastic.... who'd know I had ovarian cancer.
Still on chemo-lite, which is a good thing I suppose... retiring soon.. should be a nice thing, but I worry... what if it's not a good thing. What if I go crazy with boredom and start obsessing on my disease like so many other people I've met.
I'm trying to be prepared, working as a volunteer at the Maureen Fund, volunteering at Gilda's club... several people have suggested other volunteerism that I think about. Kaleidoscope of Hope sounds great. A really radical group of Ovarian Cancer survivors, I have to check them out.
Today, I tried, as usual to be a partner to my husband as we work on remodeling our kitchen. It was simple stuff. Moistening the walls and removing a thin paper and glue from previous wall paper. Well, after about 1 hour, my left kidney stent went spazoid.. had to take some ultram and then sit for the rest of the afternoon. I'm a strong woman, always been able to lift, pull, drag, work right along side my dear husband.... this is hard for me... to watch my abilities slowly go away.
I hope I have to strength to stay focused after I retire to stay in a good place with plans and schedules that I don't blow off. It's soooo easy to get depressed and just sleep... that's my favorite thing to do. Sleep and dream... a lovely place to be.....sometimes I don't want to get up and face the reality that is my life.
Oh well, as Gilda Radner would say in her persona of Rosanne Rosannadanna, "it's always something." This is my life, whether I like it or not... I gotta keep the ball rolling in my favor....
Peace.
Tuesday, September 21, 2010
so sick of bitching
I've kept from this blog lately because I'm sick and tired of only having crap news to write. But today was so crappy, I feel the need to document.
My story continues. I'm on chemo lite, Cytoxan oral every day and Avastin IV every 2 weeks. Although my current scans show increase in some of the cancer areas, it also shows some decrease in some of the areas where the cancer still exists. I have symptoms in my belly which indicate to me, that something is not right. Bowel changes, gas pains (never had these before), hiccups, burping, some sort of discomfort on my right upper quadrant and my mid upper quadrant that bother me.. a bit to close to some important organs, like the liver, pancreas, Gall bladder and my diaphragm.....
So I go on with my chemo lite as prescribed. Chemo regular has wreaked havoc on my body, took out my BP first, my skin second, my kidneys third (although this is really from the cancer), my energy ongoing, I have pain in my left knee from 2 cartilage injuries related to chemo, I have migratory joint pain from inflammation in my joints, on and on, .... but I struggle on through.
I still work full time... till Dec. 1, 2010 which is my first day on Medical retirement... I so wanted to make it to 25 years, but I'll miss that by 16 months... oh well, the docs say my stress and hours put out daily on the job are just too much ( between 11 and 13 hours a day and a 120 mile commute). So last week I heard that one my co-workers in what we call the cancer club... we have breast, ovarian, prostate, esophageal, more breast, another esophageal, bladder, peritoneal, cholangio, colon, more breast and most recently thyroid.
Today, I called my co-worker who was diagnosed with thyroid cancer and just recently restarted on chemo... after being very ill from the chemo, she went to her MD... she also somehow developed a swollen foot. When the doc saw the foot they x-rayed it. Found 5 stress fractures. They think it's from all the synthroid medication she's been on. So now she's in a cast and cannot bear weight. Today, after more tests, she discovered that her cancer has spread to more lymph nodes, including the back of her neck and they restaged her as a stage 4......no one should ever have to hear that news, especially after being told about 5 months ago, she was cancer free on scans.
The world is not fair, there is no answer when you look for some reason these things happen to you. People talk about fate, about God's plan... I can't think in those terms. Life is a struggle, from the minute you jump out of the womb and take your first breaths, when you try and speak, when you try and walk, when you try and learn and when you try to stay in shape. When you try and find a mate, when you try to deal with young person angst and drama, when you get married and try to live with someone, when you have children or not for some who want them, when kids or spouses are sick, when parents age and need help, when they die, when family members make poor choices, when you get sick.
The struggle is life.... there's no way out of it.... you need to learn how to deal with the struggles to the best of your abilities. That's all you can do.
My story continues. I'm on chemo lite, Cytoxan oral every day and Avastin IV every 2 weeks. Although my current scans show increase in some of the cancer areas, it also shows some decrease in some of the areas where the cancer still exists. I have symptoms in my belly which indicate to me, that something is not right. Bowel changes, gas pains (never had these before), hiccups, burping, some sort of discomfort on my right upper quadrant and my mid upper quadrant that bother me.. a bit to close to some important organs, like the liver, pancreas, Gall bladder and my diaphragm.....
So I go on with my chemo lite as prescribed. Chemo regular has wreaked havoc on my body, took out my BP first, my skin second, my kidneys third (although this is really from the cancer), my energy ongoing, I have pain in my left knee from 2 cartilage injuries related to chemo, I have migratory joint pain from inflammation in my joints, on and on, .... but I struggle on through.
I still work full time... till Dec. 1, 2010 which is my first day on Medical retirement... I so wanted to make it to 25 years, but I'll miss that by 16 months... oh well, the docs say my stress and hours put out daily on the job are just too much ( between 11 and 13 hours a day and a 120 mile commute). So last week I heard that one my co-workers in what we call the cancer club... we have breast, ovarian, prostate, esophageal, more breast, another esophageal, bladder, peritoneal, cholangio, colon, more breast and most recently thyroid.
Today, I called my co-worker who was diagnosed with thyroid cancer and just recently restarted on chemo... after being very ill from the chemo, she went to her MD... she also somehow developed a swollen foot. When the doc saw the foot they x-rayed it. Found 5 stress fractures. They think it's from all the synthroid medication she's been on. So now she's in a cast and cannot bear weight. Today, after more tests, she discovered that her cancer has spread to more lymph nodes, including the back of her neck and they restaged her as a stage 4......no one should ever have to hear that news, especially after being told about 5 months ago, she was cancer free on scans.
The world is not fair, there is no answer when you look for some reason these things happen to you. People talk about fate, about God's plan... I can't think in those terms. Life is a struggle, from the minute you jump out of the womb and take your first breaths, when you try and speak, when you try and walk, when you try and learn and when you try to stay in shape. When you try and find a mate, when you try to deal with young person angst and drama, when you get married and try to live with someone, when you have children or not for some who want them, when kids or spouses are sick, when parents age and need help, when they die, when family members make poor choices, when you get sick.
The struggle is life.... there's no way out of it.... you need to learn how to deal with the struggles to the best of your abilities. That's all you can do.
Tuesday, August 10, 2010
Wednesday, July 21, 2010
this is what it is all about
So OK, I"m typing without eyes tonight. I"m gonna reread it and alter to see all the mistakes and try to correct them, but essentially I'm blind. Got no contact's in and can't see a blumming thing.
I"m feeling really stresed out lately and can't figure aout what
hoat exactely what's goin gon,. I anca usually g;iigure out what the stimulus is, but for some reason this is not working out for me this time. I can't sleep, I can't concentrate, and I don't know why. I can usually pinpoint the reason for my lack of sleep. The lack of ability to turn my brain off and sleep, but for naught now. I haven't slept for 3 nights in a full capacity and it's making me crazy. I need sleep and when I know what's up I can work through it, but when I don't know what's up, it's impossible to figure what to do.
I"m stifled and at a loss.... don't know what to do. I do know some issues that are troubling me a bit, but not enough to make me crazy.. maybe I need to rethink that.
confused, J
I"m feeling really stresed out lately and can't figure aout what
hoat exactely what's goin gon,. I anca usually g;iigure out what the stimulus is, but for some reason this is not working out for me this time. I can't sleep, I can't concentrate, and I don't know why. I can usually pinpoint the reason for my lack of sleep. The lack of ability to turn my brain off and sleep, but for naught now. I haven't slept for 3 nights in a full capacity and it's making me crazy. I need sleep and when I know what's up I can work through it, but when I don't know what's up, it's impossible to figure what to do.
I"m stifled and at a loss.... don't know what to do. I do know some issues that are troubling me a bit, but not enough to make me crazy.. maybe I need to rethink that.
confused, J
Thursday, June 3, 2010
yayayayayaya
Tests good
Crit better
BUN better
Cancer Markers down 42 points
yayayayayayayaya
MOOD MUCH BETTER
Crit better
BUN better
Cancer Markers down 42 points
yayayayayayayaya
MOOD MUCH BETTER
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