I will confess I have Thursdayphobia.
Thursdays are my regular hang out at Tallahassee Cancer Institute Day. Cocktail days it's about 4 hours, herceptin only days - about an hour to an hour and a half..
As evidenced by my previous insomnia entry, anxiety starts to build in me and I just can't sleep.
My regular GP gave me a prescription in January for xanax - an anti-anxiety medication. Now, mind you, I really hate to take medication. ANY medication. I have learned that yes, go ahead and take Tylenol (or whatever) when you very first start to feel a headache, don't wait until the headache is entrenched or you will keep it for days. And amazingly enough (!) it works when you take meds soonest. Isn't that weird?
Since filling the prescription for the xanax, I have taken it like 2 or 3 times prior to this week.
So, upon discussion with a few loved ones, a light bulb moment once again occurs. Anti-anxiety medication is NOT for taking once you are in a full state of anxiety, nor is it taken in order to GET anxiety, no - it is to prevent anxiety. What a concept!
Tuesdays the anxiety starts, the Thursdayphobia. Thus, THIS week, I took a pill Tuesday evening and Wednesday evening. Oh MY GOODNESS!! What an amazing difference! What an amazing benefit!! I actually slept both nights. I mean out like a light, hard as a rock sleep.
Yesterday when I went in for herceptin infusion I didn't feel exhausted, I didn't feel overwhelmed, I didn't have fear trying to climb up and take me over. I can NOT say it was fun. It is really not fun. On the other hand, I had a certain calm acceptance of the inevitability of this whole process, I was not as woozy and GROSS feeling afterwards, and I took a shortish nap when I got home. I had asked my beloved to wake me up no later than 2 pm (I didn't want to sleep too long so as not to disrupt my sleep cycle) and I actually did wake up about 2:08 whereupon he told me it was close to 2:15. Okay - that's not bad.
Next week - full chemo. This means next weekend is out of the question for any meaningful activity and or eating.... So no July 4th celebration for me!! Therefore - we are having hamburgers and hot dogs and such this weekend! Blue cheese burgers, homemade cole slaw, etc., etc.. Fruit!! yum!! Obviously - I can eat right now and most things taste pretty close to how they should.... You have no idea how exciting that is for me!!!
Friday, June 24, 2011
Wednesday, June 15, 2011
Insomnia - again
I remember sleeping. I think....
I generally take about a week or so after chemo cocktail to NOT write. It's just a very difficult time and I don't want to even seem to complain. I have long contended that a day above ground is a good day and I am inclined to feel that even more strongly than before. I am not a complainer nor a whiner AND so saying -
I am tired. Each "cocktail" is a different version of discomfort, ill feeling, fatigue, etc. Universal among them has been insomnia.
First of all, it is difficult to sleep when you are pretty sure you are about to eject the entire contents of your body any second. Then you also are achy, uncomfortable, and maybe sometimes it's just that you are TOO tired to sleep.
There also exists that nagging feeling in your mind about all the things you would like to yet accomplish and so your brain just will NOT shut up.
It is 2:44 as I write this. AM. I've watched TV, I've prayed, I've run through a litany of deeds to accomplish - most of them minor, some of them not so minor.
I'd like to write letters to certain family members. Not everybody I know - just people that God has put on my heart to say something to. A living testimony of Word from God, from me, from love. HELP letters, you know. (He Extends Love Perpetually, for those who don't know.)
I don't feel like I'm about to go out for the big trip, mind you, it's just that I think I should do this while there are certain thoughts in my head. It could be many years down the road before they are handed out at my funeral which I would like to start planning, oh - now would be good.
I had a pretty good evening. Ruben went off to Christ Renews His Parish and I decided to have a "spa" night.
This heat has been killing me - and we have this lovely garden tub. As you may or may not imagine, I have been having some issues dealing with body image. The last time I took a bath in the tub I couldn't be in there for even five minutes. It just hurts my heart to see my wrecked body right now.
It is getting better - but it is going to take a while. And I did enjoy my baths with music and bubbles, oh lovely.
So - to overcome this feeling of heat, and I can't go swimming right now - I have to stay out of the sun, etc.; I filled the tub with tepid water, put on my swim suit and a Lady Antebellum CD and had a glorious 20 minutes or so soaking up some coolness to my overheated little self.
This I will do again!
And on an up note, at least post was not too whiny or full of complaint! Ah, a bath and a good night's sleep - that would be really fabulous. Soon!
I generally take about a week or so after chemo cocktail to NOT write. It's just a very difficult time and I don't want to even seem to complain. I have long contended that a day above ground is a good day and I am inclined to feel that even more strongly than before. I am not a complainer nor a whiner AND so saying -
I am tired. Each "cocktail" is a different version of discomfort, ill feeling, fatigue, etc. Universal among them has been insomnia.
First of all, it is difficult to sleep when you are pretty sure you are about to eject the entire contents of your body any second. Then you also are achy, uncomfortable, and maybe sometimes it's just that you are TOO tired to sleep.
There also exists that nagging feeling in your mind about all the things you would like to yet accomplish and so your brain just will NOT shut up.
It is 2:44 as I write this. AM. I've watched TV, I've prayed, I've run through a litany of deeds to accomplish - most of them minor, some of them not so minor.
I'd like to write letters to certain family members. Not everybody I know - just people that God has put on my heart to say something to. A living testimony of Word from God, from me, from love. HELP letters, you know. (He Extends Love Perpetually, for those who don't know.)
I don't feel like I'm about to go out for the big trip, mind you, it's just that I think I should do this while there are certain thoughts in my head. It could be many years down the road before they are handed out at my funeral which I would like to start planning, oh - now would be good.
I had a pretty good evening. Ruben went off to Christ Renews His Parish and I decided to have a "spa" night.
This heat has been killing me - and we have this lovely garden tub. As you may or may not imagine, I have been having some issues dealing with body image. The last time I took a bath in the tub I couldn't be in there for even five minutes. It just hurts my heart to see my wrecked body right now.
It is getting better - but it is going to take a while. And I did enjoy my baths with music and bubbles, oh lovely.
So - to overcome this feeling of heat, and I can't go swimming right now - I have to stay out of the sun, etc.; I filled the tub with tepid water, put on my swim suit and a Lady Antebellum CD and had a glorious 20 minutes or so soaking up some coolness to my overheated little self.
This I will do again!
And on an up note, at least post was not too whiny or full of complaint! Ah, a bath and a good night's sleep - that would be really fabulous. Soon!
Monday, June 6, 2011
The Third Week
Thus far, all of my "third weeks" have been pretty good.
I consider week one starts with the chemo cocktail, week two begins the following Thursday with an infusion of Herceptin only, and week 3 begins with the second Herceptin only infusion. Then we start all over again.
So by about halfway through the second week I start to feel pretty well. Week 3 infusion comes and for that day and the next I feel pretty crappy again. Then I get relatively close to a "normal" feeling for a few days.
This feeling, however, is tempered by anxiety. I know what's coming. I know I don't like what is coming. I repeatedly tell myself "Get in this moment, Mel. Stay in THIS moment." That does help on Saturday. It helps a little less on Sunday and on Monday. The help it provides erodes as things that used to be easy become very tiring.
I have held a "Ladies' Luncheon" earlier in the spring for the previous 3 years. It is a girly wonderful time - we wear hats - of which I can provide some extras! I get down my mother's punch bowl. We use the good silver, nice dishes and celebrate our feminine selves with pleasant company, cute food (oh come on ladies - you know you love cute food), laughter and companionship. I was unable to do that this year and I really miss that experience.
Next year I will re-institute this event. Also next year - I need to start planning now - I will have to have a "I am Alive" celebration. With food that I like and can actually taste. Much of the time right now I may as well eat cardboard, styro-foam, or aluminum foil. Doesn't sound too appealing does it?
So some of the time I can actually taste food and that is great when I can. Sometimes, however, does not count!! Which leads me to today's lecture on ...
The Theory of Food vs The Reality of Food
"What sounds good for dinner?" Ah, here is a question. You see, any number of things may SOUND good for dinner, or lunch, or breakfast or just it sounds good.... That would fall under The Theory of Food. Let's use as an example a juicy, medium rare steak. Oh I am a carnivore - and happy to be one. If God wanted us to be vegetarians He would not have made beef so very tasty... Envision the steak - It looks delicious, it smells delicious, you know that it is tender and flavorful. Then you cut in to this steak, take a bite and taste - nothing. Or it tastes metallic. Or it just tastes strange - not like food that is spoiled, just off, not quite like anything that is good or that you would want to eat. There is where we come to Food Reality while on chemo.
And it can be anything - maybe some sweet delicious Ranier Cherries. You know they are fruity deliciousness. But are they? Maybe. It depends on when you eat them. And that could change at any time. And may be different in a couple of days.
I do enjoy when food tastes like food. I keep holding out for that. Thus - I won't eat my very favorite things right now. There just isn't much point. Say a beautiful Brie cheese with some lovely fruit.
Add to the mix the delightful (?) proposition of tasting it for the second time, if you catch my drift....
I want to like the foods I like when this is all over, so I won't risk ruining them by the results of extreme nausea...
Right now - in this 3rd week, food tastes pretty good, I am not nauseated unless I get over tired, and then it can pass pretty quickly if I get some rest, so I am enjoying food. I intend to continue to do so until we live again in the conflict of theory vs reality. It won't last forever. And there is always flour tortillas; one of the few foods that always (for ME, at least) tastes like what it is.....
I consider week one starts with the chemo cocktail, week two begins the following Thursday with an infusion of Herceptin only, and week 3 begins with the second Herceptin only infusion. Then we start all over again.
So by about halfway through the second week I start to feel pretty well. Week 3 infusion comes and for that day and the next I feel pretty crappy again. Then I get relatively close to a "normal" feeling for a few days.
This feeling, however, is tempered by anxiety. I know what's coming. I know I don't like what is coming. I repeatedly tell myself "Get in this moment, Mel. Stay in THIS moment." That does help on Saturday. It helps a little less on Sunday and on Monday. The help it provides erodes as things that used to be easy become very tiring.
I have held a "Ladies' Luncheon" earlier in the spring for the previous 3 years. It is a girly wonderful time - we wear hats - of which I can provide some extras! I get down my mother's punch bowl. We use the good silver, nice dishes and celebrate our feminine selves with pleasant company, cute food (oh come on ladies - you know you love cute food), laughter and companionship. I was unable to do that this year and I really miss that experience.
Next year I will re-institute this event. Also next year - I need to start planning now - I will have to have a "I am Alive" celebration. With food that I like and can actually taste. Much of the time right now I may as well eat cardboard, styro-foam, or aluminum foil. Doesn't sound too appealing does it?
So some of the time I can actually taste food and that is great when I can. Sometimes, however, does not count!! Which leads me to today's lecture on ...
The Theory of Food vs The Reality of Food
"What sounds good for dinner?" Ah, here is a question. You see, any number of things may SOUND good for dinner, or lunch, or breakfast or just it sounds good.... That would fall under The Theory of Food. Let's use as an example a juicy, medium rare steak. Oh I am a carnivore - and happy to be one. If God wanted us to be vegetarians He would not have made beef so very tasty... Envision the steak - It looks delicious, it smells delicious, you know that it is tender and flavorful. Then you cut in to this steak, take a bite and taste - nothing. Or it tastes metallic. Or it just tastes strange - not like food that is spoiled, just off, not quite like anything that is good or that you would want to eat. There is where we come to Food Reality while on chemo.
And it can be anything - maybe some sweet delicious Ranier Cherries. You know they are fruity deliciousness. But are they? Maybe. It depends on when you eat them. And that could change at any time. And may be different in a couple of days.
I do enjoy when food tastes like food. I keep holding out for that. Thus - I won't eat my very favorite things right now. There just isn't much point. Say a beautiful Brie cheese with some lovely fruit.
Add to the mix the delightful (?) proposition of tasting it for the second time, if you catch my drift....
I want to like the foods I like when this is all over, so I won't risk ruining them by the results of extreme nausea...
Right now - in this 3rd week, food tastes pretty good, I am not nauseated unless I get over tired, and then it can pass pretty quickly if I get some rest, so I am enjoying food. I intend to continue to do so until we live again in the conflict of theory vs reality. It won't last forever. And there is always flour tortillas; one of the few foods that always (for ME, at least) tastes like what it is.....
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