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Thursday, August 20, 2015
Thursday, August 13, 2015
What Glass?
Seriously. The third day after the Taxol seems the worst for me. Today is not so bad for a bad day but still bad.
On the bad day my eyes don't work as well. Well, actually that's not true, my eyes work fine but my brain can't handle them. I have mono vision. One of my eyes can see distance and one sees close up. My brain just does the work and knows how to translate it. Except today. Today it's harder. I can't see the bus number unless I cover up my 'up close' eye and leave only the distance one. I can mostly read the computer but I have to squint a lot and I cant look away and look back, takes to long to focus. It gives me a bit of a headache but that is mostly ignore-able because of the other pain.
The other pain. Wow. Its less common to get joint and muscle pain on the weekly Taxol. I guess I'm the lucky one. It may be because I have some underlying arthritis but that doesn't cover the muscle pain. So my knees, they are normally around a 2 on the scale when walking but on bad days they go up to a 10. Seriously, a 10 and maybe a 9 when sitting. It was getting worse each week. Last week I got a new prescription from the oncologist to fight it off. It is helping, today was more a 6-7 when walking, I can live with that (and I'm working from home so not much walking either). And I also got some T3s for when I can't take the pain (so far okay today, maybe when I try to sleep tonite). And I had none of the muscle pain. The muscle pain is best described like after you've run a marathon but didn't stretch and there is so much lactic acid in your muscles that it hurts not just to move, but to touch them.
Then there is the crying. It's random and it's uncontrollable. I just start crying. I can be walking down the street and it starts. It stops when it's ready to stop but I'm very sad the entire time. It's like all the sorrow has to come out at once. And it's not like I don't cry other times, maybe I don't cry in front of others often, but I do cry. This is different, this is deep sudden sorrow that I can't cheer away or postpone.
And I'm tired, beyond tired, too tired to sleep serious fatigue. Even if I could have coffee, it would not make a dent in this. I can't focus well, no multitasking, I have to concentrate on what I'm doing and do it before moving onto something else. This is not me, not me at all. In general my brain is a bit affected other days (Monday I could not remember how to crochet...I watched a short video and was okay after but I start there with the chains done and no idea how to do a single crochet stitch).
When I say Thursday, that is when it peaks, it starts a bit earlier each week. This week it was almost exactly 3pm. How do I know? I was having a normal day. I was on the way to the bathroom and I had the random thought of "I hate my life" followed by a yawn. But generally I love my life. I can even sometimes forget about the big "C" but not on Thursday. That is such a common thought on Thursday, and it just comes to me. Thursdays I want to quit work. I want to quit seeing friends, I have no patience with the kids. TV sucks, food sucks, life sucks.
See on Thursday not only is the glass not half full, the glass is not half empty either. There is no glass left. It was dropped to the ground and stomped all over until it is just tiny little shards.
The thing that keeps me going is knowing that sometime Friday, there will be another glass. This one will be smaller than the one that was there the week before, but it will be there and it will gradually fill until it's half full again and I'm back to the optimist that is so natural for me. Until it starts all over again.
I have another two weeks of this drug. Two more weeks of this day (and a bit) of hell. Then I move onto a new unknown to me drug with it's own potential side effects. When I think of that, of the high incidence of nausea, of fatigue and of total lack of immunity, I get scared. If I think of it on a Thursday I get very scared. I'm not sure I'm strong enough. But I have to me, so I will be. But it sucks, it really, really sucks.
On the bad day my eyes don't work as well. Well, actually that's not true, my eyes work fine but my brain can't handle them. I have mono vision. One of my eyes can see distance and one sees close up. My brain just does the work and knows how to translate it. Except today. Today it's harder. I can't see the bus number unless I cover up my 'up close' eye and leave only the distance one. I can mostly read the computer but I have to squint a lot and I cant look away and look back, takes to long to focus. It gives me a bit of a headache but that is mostly ignore-able because of the other pain.
The other pain. Wow. Its less common to get joint and muscle pain on the weekly Taxol. I guess I'm the lucky one. It may be because I have some underlying arthritis but that doesn't cover the muscle pain. So my knees, they are normally around a 2 on the scale when walking but on bad days they go up to a 10. Seriously, a 10 and maybe a 9 when sitting. It was getting worse each week. Last week I got a new prescription from the oncologist to fight it off. It is helping, today was more a 6-7 when walking, I can live with that (and I'm working from home so not much walking either). And I also got some T3s for when I can't take the pain (so far okay today, maybe when I try to sleep tonite). And I had none of the muscle pain. The muscle pain is best described like after you've run a marathon but didn't stretch and there is so much lactic acid in your muscles that it hurts not just to move, but to touch them.
Then there is the crying. It's random and it's uncontrollable. I just start crying. I can be walking down the street and it starts. It stops when it's ready to stop but I'm very sad the entire time. It's like all the sorrow has to come out at once. And it's not like I don't cry other times, maybe I don't cry in front of others often, but I do cry. This is different, this is deep sudden sorrow that I can't cheer away or postpone.
And I'm tired, beyond tired, too tired to sleep serious fatigue. Even if I could have coffee, it would not make a dent in this. I can't focus well, no multitasking, I have to concentrate on what I'm doing and do it before moving onto something else. This is not me, not me at all. In general my brain is a bit affected other days (Monday I could not remember how to crochet...I watched a short video and was okay after but I start there with the chains done and no idea how to do a single crochet stitch).
When I say Thursday, that is when it peaks, it starts a bit earlier each week. This week it was almost exactly 3pm. How do I know? I was having a normal day. I was on the way to the bathroom and I had the random thought of "I hate my life" followed by a yawn. But generally I love my life. I can even sometimes forget about the big "C" but not on Thursday. That is such a common thought on Thursday, and it just comes to me. Thursdays I want to quit work. I want to quit seeing friends, I have no patience with the kids. TV sucks, food sucks, life sucks.
See on Thursday not only is the glass not half full, the glass is not half empty either. There is no glass left. It was dropped to the ground and stomped all over until it is just tiny little shards.
The thing that keeps me going is knowing that sometime Friday, there will be another glass. This one will be smaller than the one that was there the week before, but it will be there and it will gradually fill until it's half full again and I'm back to the optimist that is so natural for me. Until it starts all over again.
I have another two weeks of this drug. Two more weeks of this day (and a bit) of hell. Then I move onto a new unknown to me drug with it's own potential side effects. When I think of that, of the high incidence of nausea, of fatigue and of total lack of immunity, I get scared. If I think of it on a Thursday I get very scared. I'm not sure I'm strong enough. But I have to me, so I will be. But it sucks, it really, really sucks.
Tuesday, August 11, 2015
Glass half full
Today was a good day for me. Tomorrow, well, we'll see.
Everyone's experience with chemo is different. Here is a little window into mine so far. I have good days, mediocre days and days that suck. Every week what is good is less than the week before and what is bad is also work. But today was good day so I'll talk about mostly about that.
Even though this was a good day, I still have neuropathy in my feet. I have almost no hair. I have less coordination than I normally do (I should have worn an apron when I baked) and I have to read the recipes a few times to remember them.
I had some energy. Work went well, I got a few little things cleared off my list and got progress into a bit of a bigger project. Normally the boys have swimming on Tuesday so I don't get home until after 6 then its a rushed dinner and bedtime. I also have great friends, who ran my boys ragged at the beach after they were already run ragged at soccer camp. So they came home just before bedtime. So today, while I had the energy, I took a load of stuff to the thrift store for donation, took out the garbage and recycling, deep cleaned the bathroom (yuck), washed down a kitchen cupboard as part of my organizing, and did a load of laundry. After getting the kids to bed I baked scones and made a whipped spread for a potluck tomorrow. I managed to keep up with the cooking clean-up while the scones were baking. But I hit the wall just towards the end of the whipped spread. I managed to get it all in the fridge and the mixing bowl and beaters in the sink but then I was totally done.
It sounds like a lot and to me it is, but it was spread over almost 4 hours. Pre chemo that would have been done in under 2 hours and I would have still had energy to spare. So a good day is not like a good day pre chemo. And each week, a full energy meter is less than it was the week before.
I seem to have 2 or 3 good days a week, with Sunday and Tuesday the best normally. Monday would be good but, well, that is chemo day so there is a certain amount of stress plus a dose of benadryl that knocks me on my ass. Then there are a couple of mediocre days where I just get by. Then there are those days, the sucky ones. I'm not going into detail about those now because in my happy glass half full state, I can't give them credit. I'll try to do a post this week on a sucky day.
For now, even though I hit the wall, I had a good day. My glass remains half full, even if it is a smaller glass than it was last week, it is still half full!
Everyone's experience with chemo is different. Here is a little window into mine so far. I have good days, mediocre days and days that suck. Every week what is good is less than the week before and what is bad is also work. But today was good day so I'll talk about mostly about that.
Even though this was a good day, I still have neuropathy in my feet. I have almost no hair. I have less coordination than I normally do (I should have worn an apron when I baked) and I have to read the recipes a few times to remember them.
I had some energy. Work went well, I got a few little things cleared off my list and got progress into a bit of a bigger project. Normally the boys have swimming on Tuesday so I don't get home until after 6 then its a rushed dinner and bedtime. I also have great friends, who ran my boys ragged at the beach after they were already run ragged at soccer camp. So they came home just before bedtime. So today, while I had the energy, I took a load of stuff to the thrift store for donation, took out the garbage and recycling, deep cleaned the bathroom (yuck), washed down a kitchen cupboard as part of my organizing, and did a load of laundry. After getting the kids to bed I baked scones and made a whipped spread for a potluck tomorrow. I managed to keep up with the cooking clean-up while the scones were baking. But I hit the wall just towards the end of the whipped spread. I managed to get it all in the fridge and the mixing bowl and beaters in the sink but then I was totally done.
It sounds like a lot and to me it is, but it was spread over almost 4 hours. Pre chemo that would have been done in under 2 hours and I would have still had energy to spare. So a good day is not like a good day pre chemo. And each week, a full energy meter is less than it was the week before.
I seem to have 2 or 3 good days a week, with Sunday and Tuesday the best normally. Monday would be good but, well, that is chemo day so there is a certain amount of stress plus a dose of benadryl that knocks me on my ass. Then there are a couple of mediocre days where I just get by. Then there are those days, the sucky ones. I'm not going into detail about those now because in my happy glass half full state, I can't give them credit. I'll try to do a post this week on a sucky day.
For now, even though I hit the wall, I had a good day. My glass remains half full, even if it is a smaller glass than it was last week, it is still half full!
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