I hate that I have this blog, because it means I have cancer. I just read the Five Stage of Grief and I am so in stage two that I am embarrassed.
Anger – "Why me? It's not fair!"; "How can this happen to me?"; "Who is to blame?" Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Any individual that symbolizes life or energy is subject to projected resentment and jealousy.
There it is. My shame. I have nothing else to say except it's not a nice place to be in - to feel so much jealousy and anger. It brings me to sad bitter tears. I feel like such a meany, so unChristian-like, so sad. I know it must be normal if it's written down, but I still don't like it. And now that I read it again, I am not sure I am "very difficult to care for." And it's not true that any individual is a target for me. Mostly I feel jealous of freedom of movement - both literal and metaphorical. I feel weak and fatigued so I can't do much. I have a lot of crap going around in my head, so even if I can move I can't get away from myself. My head. My crap-filled head.
I didn't post last night because I just needed a night where I didn't have to end up crying in front of the computer or really digging into how I am feeling. I just needed a night with a stupid movie and Pat and for those two hours I honestly forgot that I am a cancer patient who has a ton of anxiety and fear and fatigue. I was just a person watching a semi-funny movie. Is that too much to ask?
As you all know, this blog has just about saved my sanity, but I might be going through a phase where it's hard for me to bare all. Or maybe not, because this seems pretty much like baring it all.
Showing posts with label fatigue. Show all posts
Showing posts with label fatigue. Show all posts
Monday, November 8, 2010
Friday, October 29, 2010
What Happened to the Kitty?
Our kitty has a big bump on her head. A real goose-egg. I have no idea what happened and we are all concerned. Even Bennett is being nice to her frienemy, the cat. I am sure after a good night's sleep she will be fine, but it's still a little disconcerting. Bennett has a little cold, Pat has a sore throat, the cat got hurt who knows how, and I still have cancer.
That's the thing that gets me. I can have a really good day, like today, and when I sit to write I think, oh yeah, I have cancer. I still wonder how that can be. It's a little like the cat - what the hell happened? At least with her, I can be pretty sure she is going to be better in the morning and by tomorrow night she will be torturing the mice in the cemetery behind the house. Me, I probably won't be up to catching mice until next summer.
I did have a nice day today. I thought since I had such a great day yesterday, I wouldn't have to take the anti-anxiety meds. Ha! I took them yesterday, why did I think today would be any different? Even Magical Mary Ann, told me to take the meds. I thought she would want me to only use some fancy breathing trick, but no. So, I took the meds again this morning and it does make a huge difference. The little pill lets me have my day. B and I hung out for a long time just watching Dora and cuddling. Then I went to get a new phone (my old one was acting weird and the idea of not having a phone is scary for me), went to the park until it rained so hard we had to leave. Then more cuddling and Dora. Until Auntie Ruth and Theo took B to the farm for the very last pick up. I happen to know they saw BFF Avy there and played a game called "dangerous truck." The amount of sand that came out of Bennett's hair at bath time can attest to the fun they must have had.
I, on the other hand, had a delicious nap and played word games on the iPaddy for about an hour afterwards. It was the perfect break. I nap now with my iPad playing wave sounds. I always have the radio on classical and I listen to podcasts when I get to the studio. My mom was right, it just makes life richer to have sound around all the time. I think the wave sound keeps some part of my mind busy so that I don't have as many of the bad thoughts.
I still have the bad thoughts. They are there and I am pretty sure I will never be rid of them. That's okay, as long as I can try to befriend them - to take the power away. They are part of me, after all. I really hate to admit it, but they are. It seems silly that I would have to go through cancer and actually believe that I could get away with not having scary repetitive thoughts and bad dreams. Another surprise.
The one thing that really surprised me the other day, is that I knew some of the things that were going to happen to me - the hair, the nausea, being bone tired, etc, - I just didn't know they were all going to happen at once. I thought I would get the chance to tackle them one at a time. Not so, my friends. They are all happening at the same time. Who knew? To have a couple of good days seems like such a gift. I will take these gifts and thank God and the universe for them. Remind myself of all the good things I have in between the bad thoughts, fatigue and nightmares. So, thank you God and I'll take another.
That's the thing that gets me. I can have a really good day, like today, and when I sit to write I think, oh yeah, I have cancer. I still wonder how that can be. It's a little like the cat - what the hell happened? At least with her, I can be pretty sure she is going to be better in the morning and by tomorrow night she will be torturing the mice in the cemetery behind the house. Me, I probably won't be up to catching mice until next summer.
I did have a nice day today. I thought since I had such a great day yesterday, I wouldn't have to take the anti-anxiety meds. Ha! I took them yesterday, why did I think today would be any different? Even Magical Mary Ann, told me to take the meds. I thought she would want me to only use some fancy breathing trick, but no. So, I took the meds again this morning and it does make a huge difference. The little pill lets me have my day. B and I hung out for a long time just watching Dora and cuddling. Then I went to get a new phone (my old one was acting weird and the idea of not having a phone is scary for me), went to the park until it rained so hard we had to leave. Then more cuddling and Dora. Until Auntie Ruth and Theo took B to the farm for the very last pick up. I happen to know they saw BFF Avy there and played a game called "dangerous truck." The amount of sand that came out of Bennett's hair at bath time can attest to the fun they must have had.
I, on the other hand, had a delicious nap and played word games on the iPaddy for about an hour afterwards. It was the perfect break. I nap now with my iPad playing wave sounds. I always have the radio on classical and I listen to podcasts when I get to the studio. My mom was right, it just makes life richer to have sound around all the time. I think the wave sound keeps some part of my mind busy so that I don't have as many of the bad thoughts.
I still have the bad thoughts. They are there and I am pretty sure I will never be rid of them. That's okay, as long as I can try to befriend them - to take the power away. They are part of me, after all. I really hate to admit it, but they are. It seems silly that I would have to go through cancer and actually believe that I could get away with not having scary repetitive thoughts and bad dreams. Another surprise.
The one thing that really surprised me the other day, is that I knew some of the things that were going to happen to me - the hair, the nausea, being bone tired, etc, - I just didn't know they were all going to happen at once. I thought I would get the chance to tackle them one at a time. Not so, my friends. They are all happening at the same time. Who knew? To have a couple of good days seems like such a gift. I will take these gifts and thank God and the universe for them. Remind myself of all the good things I have in between the bad thoughts, fatigue and nightmares. So, thank you God and I'll take another.
Sunday, October 3, 2010
Mind Full, Body Blank
What a shift today. I woke up fully aware this morning, but so tired. Tired is not even in the same league as how I felt. Exhausted, fatigued? None of it is right. I heard the voice of Sue the chemo nurse, don't spend all day in bed. So I got up and walked the dog. My ears were blown and that makes me feel like I can't really see or hear, so that was pretty uncomfortable. Plus, the walk was brief. I got home and played with B for about an hour and had to take a two hour nap. Pat took B to Aunt Julie's while I continued to spend the day in bed. Mostly giving myself a hard time for being in bed. I wrenched myself out for about 30 minutes, which I spent shakily cutting glass in the studio. That sent me back to bed for another nap. At that point I called my mom and spent the rest of the time in bed, reading, chatting and feeling like it just had to be okay that I needed to be there, in the damn bed.
I would be there now but Bennett is sleeping there. I have been spending the nights in the back room because Bennett has a cold - and Pat is working is that room. 4000 square feet and no place to go. No, really, I am being melodramatic. I want to post. I want to post to a blog called "My Cancer Year." The premise being I tried having cancer for a year, then gave it up or adopted some parts of my experience into my life, but cut some of the harder bits out. Like this is voluntary - and at the end I get a fat book contract.
No such luck. This business has been going on for only about 2.5 months and I am already pretty sure what bits I would cut out. The cancer would go, for sure. The chemo right after that. I would keep the people at UMASS Memorial because they are so nice and attentive. I would also keep all of the reflexology and the ways people are super nice to me. I would also make sure not to keep the fatigue and all the millions of pills.
Oh, and the Ensure would have to go. My god, how gross is that stuff? I have been drinking two a day to up my calories. It tastes like a bad milkshake with a multivitamin crushed in there. I am very thin, at least for me. My smallest pants fall off me and I need to get a belt soon or the world will see the state of my sad sad huge underpants. Am I getting too personal?
Tomorrow is Monday. Pat will be home in the afternoon, so I don't have to worry about the long day with B on my own. We need someone to come live with us. Why, I ask, are all of my nieces and nephews so responsible and stable? If only there was one who needed a place to be for a few months, who would be willing to help out and just be part of this craziness? Any ideas?
I am going to pray for tomorrow to be filled with light, enough physical and mental strength to get me through the day, and a good appetite. Pray with me, will you?
I would be there now but Bennett is sleeping there. I have been spending the nights in the back room because Bennett has a cold - and Pat is working is that room. 4000 square feet and no place to go. No, really, I am being melodramatic. I want to post. I want to post to a blog called "My Cancer Year." The premise being I tried having cancer for a year, then gave it up or adopted some parts of my experience into my life, but cut some of the harder bits out. Like this is voluntary - and at the end I get a fat book contract.
No such luck. This business has been going on for only about 2.5 months and I am already pretty sure what bits I would cut out. The cancer would go, for sure. The chemo right after that. I would keep the people at UMASS Memorial because they are so nice and attentive. I would also keep all of the reflexology and the ways people are super nice to me. I would also make sure not to keep the fatigue and all the millions of pills.
Oh, and the Ensure would have to go. My god, how gross is that stuff? I have been drinking two a day to up my calories. It tastes like a bad milkshake with a multivitamin crushed in there. I am very thin, at least for me. My smallest pants fall off me and I need to get a belt soon or the world will see the state of my sad sad huge underpants. Am I getting too personal?
Tomorrow is Monday. Pat will be home in the afternoon, so I don't have to worry about the long day with B on my own. We need someone to come live with us. Why, I ask, are all of my nieces and nephews so responsible and stable? If only there was one who needed a place to be for a few months, who would be willing to help out and just be part of this craziness? Any ideas?
I am going to pray for tomorrow to be filled with light, enough physical and mental strength to get me through the day, and a good appetite. Pray with me, will you?
Saturday, October 2, 2010
A Blank Mind
It's uncanny how today my mind had been utterly blank. Not one bit of inspiration or idea to be had. I can't even muster a scary scenario. Oh, maybe I could do that if I really tried. It's as if all of what has happened in the past week has gone underground and has left me with nothing.
Today I did very little. Took a shower, played with B, folded the laundry and napped. That's the sum total of the gift of today. My friend Ruth assures me that my mind is working things out at a very deep level. That's a pretty nice way to let me off the hook for being either total spaced out, in denial or disengaged - or all three. I will take it, though, because I try so hard to stay present and real that sometimes I just need a day of blankness. Of course the fear is I will be blank forever.
I did fall asleep to the thoughts of working on my stained glass project. That could be seen as a good sign. Or maybe I should just stop questioning and let myself be. Alright.
I feel a little weak and tired today, like I don't really have the energy to do much. It's hard because I don't want to use too many calories to, say, take a walk. What if not taking a walk means I am giving in to being weak? It's such a hard balance. I have to remind myself that I am one day post chemo and that it is normal to feel kicked to the curb. Maybe this entire post has been a way to make myself feel like the way that I am feeling is not just normal but okay.
Today I did very little. Took a shower, played with B, folded the laundry and napped. That's the sum total of the gift of today. My friend Ruth assures me that my mind is working things out at a very deep level. That's a pretty nice way to let me off the hook for being either total spaced out, in denial or disengaged - or all three. I will take it, though, because I try so hard to stay present and real that sometimes I just need a day of blankness. Of course the fear is I will be blank forever.
I did fall asleep to the thoughts of working on my stained glass project. That could be seen as a good sign. Or maybe I should just stop questioning and let myself be. Alright.
I feel a little weak and tired today, like I don't really have the energy to do much. It's hard because I don't want to use too many calories to, say, take a walk. What if not taking a walk means I am giving in to being weak? It's such a hard balance. I have to remind myself that I am one day post chemo and that it is normal to feel kicked to the curb. Maybe this entire post has been a way to make myself feel like the way that I am feeling is not just normal but okay.
Saturday, September 25, 2010
Super Saturday
I feel almost guilty posting today. There isn't really anything to report. Pat assures me that not having anything to report, is in fact, something to report. I feel really good and it's been 36 hours of feeling good. Yay, I am crossing my fingers it stays this way for a lot longer than 36 hours.
We are still cleaning like mad. I should say my contribution is limited; Pat is madly vacuuming, Mary is at the shops getting a ton of supplies for us. I am not sure about how I feel about going to the grocery store at this point and Pat is only one person. She does so much. I guess this is what everyone talks about asking for help. And it's wonderful to have Mary here to help so much. Not to mention everyone else who helps us every week with Bennett, chemo, mental health check-ins. It's all so good.
Bennett is watching Dora and I am posting after we feasted on chicken soup sent from a cancer survivor friend. Fantastic to eat some soup made by someone who fought such a tough fight and is living fully. It's like liquid life.
We moved, I use "we" loosely, furniture into the new bedroom this morning. Now I have a lovely place to go when I need time to myself. We are billing the room as anyone can sleep there, but I secretly believe it's my room. Light and bright, filled with the love put into it by everyone who helped build and paint. The only problem with that room is it makes me feel like every other room in the house needs to be gutted and redone. Ridiculous considering I don't really have the energy to do the laundry.
Yes, I am still tired after all the rest I've had. I think it's just going to be my state for awhile. It's a weird kind of tired, not sleepy, not really fatigue, just moving slow and when I do I want to sit down. I am beginning to think it's a component of fear, but I am not sure. Moving too quickly might make me panicky? I don't know. I mostly just feel like napping and watching Top Chef. Not really the way to live this precious life. So I lay down a little here and there and I keep the Top Chef for before bed. I think I am sending Mary home addicted. Whoops.
Still looking toward my chemo on Wednesday and making lots of WBC until then. I love all the thoughts, crossed fingers and prayers coming my way. I can feel them, I really can.
We are still cleaning like mad. I should say my contribution is limited; Pat is madly vacuuming, Mary is at the shops getting a ton of supplies for us. I am not sure about how I feel about going to the grocery store at this point and Pat is only one person. She does so much. I guess this is what everyone talks about asking for help. And it's wonderful to have Mary here to help so much. Not to mention everyone else who helps us every week with Bennett, chemo, mental health check-ins. It's all so good.
Bennett is watching Dora and I am posting after we feasted on chicken soup sent from a cancer survivor friend. Fantastic to eat some soup made by someone who fought such a tough fight and is living fully. It's like liquid life.
We moved, I use "we" loosely, furniture into the new bedroom this morning. Now I have a lovely place to go when I need time to myself. We are billing the room as anyone can sleep there, but I secretly believe it's my room. Light and bright, filled with the love put into it by everyone who helped build and paint. The only problem with that room is it makes me feel like every other room in the house needs to be gutted and redone. Ridiculous considering I don't really have the energy to do the laundry.
Yes, I am still tired after all the rest I've had. I think it's just going to be my state for awhile. It's a weird kind of tired, not sleepy, not really fatigue, just moving slow and when I do I want to sit down. I am beginning to think it's a component of fear, but I am not sure. Moving too quickly might make me panicky? I don't know. I mostly just feel like napping and watching Top Chef. Not really the way to live this precious life. So I lay down a little here and there and I keep the Top Chef for before bed. I think I am sending Mary home addicted. Whoops.
Still looking toward my chemo on Wednesday and making lots of WBC until then. I love all the thoughts, crossed fingers and prayers coming my way. I can feel them, I really can.
Sunday, September 12, 2010
Texas Christmas Pickles
A cancer blog with recipes? Why yes, why not? Here is my favorite pickle recipe and it's so good you might want to double it. It's good for people who don't can, because you can just stop after the six days and eat them. Yum. Even though I can't eat them right now, these pickles do not last in this house. Come to think of it, Pat can't eat them and Bennett doesn't. Where do all of our TX Xmas pickles go?
TX XMAS Ruth Style.
Makes 4-5 pints
Takes about a week - mostly waiting
1/2 gallon whole dill pickles.
2.5 oz Tabasco (or to taste)
5 cloves garlic, chopped coarsely
1.25 lbs sugar
Drain pickles, slice them any shape you want and put back in their
jar. Add garlic, Tabasco and 1/3 of the sugar. Shake until the sugar
starts to dissolve. Over the course of the following 6 days, add a
little sugar and shake the jar every time you notice the sugar has
dissolved.
At this point you can go ahead and eat them, but I like to can them.
Get your jars and canning pot ready.
Drain the pickles and reserve brine, bring to a
boil. Remove garlic and pack pickles into pint jars that have been
prepared with two 1/4" slices of lemon and 2-3 cloves of garlic each.
Water bath can for 15 minutes. Wait a week before eating, if you can!
Other Stuff
What a day! Good and bad, just like any other day. Pat let me sleep in again, and this time it was totally necessary. I woke up exhausted and didn't feel better until I had a nap in the early afternoon. But I get ahead of myself. Woke up exhausted and pissed at myself for being so tired. And guilty. Tired, pissed and guilty. A nice combination for a Sunday morning. Pat got us all in the car for what felt to me like a hideously long hike, but was really just a 45 minutes stroll on a trail on Mt. Tom. My ears were blown out - like on an airplane. I felt like Darth Vader, without any power and cool clothes. So I was tired, pissed, guilty and couldn't really hear anything but my own breathing.
At the end of the hike, I looked at Pat and said "I am so weak." She took me home, I went to bed and woke up a new person. Bennett quietly woke me and I was so happy to see her. My ears were better, I wasn't weak or exhausted, pissed or guilty. I was just me again. Pat went to work on the baseboards for the bedroom (we are SO close to being done), and I played with B for the next couple of hours. It was a blast. I am so grateful to have such a life. To be able to have enough flexibility and understanding around me to be able to do what I needed to do to get back to my new normal. What a gift.
I have been asking myself why I feel so guilty for being tired. I am not sure why I thought I would go through this unscathed. Everyone talks about how brutal chemo is. Did I think it would be different for me? Frankly, yes. I thought the main inconvenience would be the time getting the treatments. I didn't realize, really understand, that I was going to feel a way I hate to feel - unable. Unable to get up right when I wake up, unable to clean the bathroom because I can't use the cleaners, unable to go where there are a lot of people because of the germs, unable to pay attention to the kid I waited my whole life to have because I can't hear anything but my own breath. And on and on.
But I am able. And I am not barfing and I do not have diarrhea and the ginger slices help the anti-nausea meds a lot. So I will take the week ahead of me one moment at a time. Try to be kinder to myself when I am feeling weak and tired. Remember that sometimes my idea of what to do in a day is too much - even on a good day.
TX XMAS Ruth Style.
Makes 4-5 pints
Takes about a week - mostly waiting
1/2 gallon whole dill pickles.
2.5 oz Tabasco (or to taste)
5 cloves garlic, chopped coarsely
1.25 lbs sugar
Drain pickles, slice them any shape you want and put back in their
jar. Add garlic, Tabasco and 1/3 of the sugar. Shake until the sugar
starts to dissolve. Over the course of the following 6 days, add a
little sugar and shake the jar every time you notice the sugar has
dissolved.
At this point you can go ahead and eat them, but I like to can them.
Get your jars and canning pot ready.
Drain the pickles and reserve brine, bring to a
boil. Remove garlic and pack pickles into pint jars that have been
prepared with two 1/4" slices of lemon and 2-3 cloves of garlic each.
Water bath can for 15 minutes. Wait a week before eating, if you can!
Other Stuff
What a day! Good and bad, just like any other day. Pat let me sleep in again, and this time it was totally necessary. I woke up exhausted and didn't feel better until I had a nap in the early afternoon. But I get ahead of myself. Woke up exhausted and pissed at myself for being so tired. And guilty. Tired, pissed and guilty. A nice combination for a Sunday morning. Pat got us all in the car for what felt to me like a hideously long hike, but was really just a 45 minutes stroll on a trail on Mt. Tom. My ears were blown out - like on an airplane. I felt like Darth Vader, without any power and cool clothes. So I was tired, pissed, guilty and couldn't really hear anything but my own breathing.
At the end of the hike, I looked at Pat and said "I am so weak." She took me home, I went to bed and woke up a new person. Bennett quietly woke me and I was so happy to see her. My ears were better, I wasn't weak or exhausted, pissed or guilty. I was just me again. Pat went to work on the baseboards for the bedroom (we are SO close to being done), and I played with B for the next couple of hours. It was a blast. I am so grateful to have such a life. To be able to have enough flexibility and understanding around me to be able to do what I needed to do to get back to my new normal. What a gift.
I have been asking myself why I feel so guilty for being tired. I am not sure why I thought I would go through this unscathed. Everyone talks about how brutal chemo is. Did I think it would be different for me? Frankly, yes. I thought the main inconvenience would be the time getting the treatments. I didn't realize, really understand, that I was going to feel a way I hate to feel - unable. Unable to get up right when I wake up, unable to clean the bathroom because I can't use the cleaners, unable to go where there are a lot of people because of the germs, unable to pay attention to the kid I waited my whole life to have because I can't hear anything but my own breath. And on and on.
But I am able. And I am not barfing and I do not have diarrhea and the ginger slices help the anti-nausea meds a lot. So I will take the week ahead of me one moment at a time. Try to be kinder to myself when I am feeling weak and tired. Remember that sometimes my idea of what to do in a day is too much - even on a good day.
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