Yes, late night is 8pm. I am bushed. Do I start all of my posts this way? It seems like it. I returned my pump today and am glad to be free of it. As reassuring as the whooshing is it is heavy and cumbersome. So, I return it with hopes of getting it back in two weeks. Looks good, after all this was the first time I got to have chemo as scheduled. I almost couldn't believe.
And now I am tired is a weirdly wired way. All I want to do is sleep, but I am not sleepy. I think this is true fatigue- my mind is not where my body is. I don't really like it at all. I will do my best after having a terrible night's sleep with two sick people. Tonight I may sleep on the futon, to be away from the sickies and to get some sleep.
I am eating polenta with creamy tomato sauce. My stomach has been very calm lately which gives me a lot of hope. I continue my very limited diet which I am sure helps, but I also think the chemo is starting to work on the big tumor in my colon. I don't want to get ahead of myself, but I am feeling hopeful. How bad could that be?
Honestly, I haven't been all that hopeful lately. Mostly tired and grumpy about the things I can't do. But a friend reminded me that I can spend this time resenting what I can't do, or imagining the joy of doing the things I am missing next year. That seems like a tall order today, but I can work on it.
Showing posts with label sleep. Show all posts
Showing posts with label sleep. Show all posts
Thursday, November 4, 2010
Tuesday, October 19, 2010
Oh Yuck
That is how I feel. Everything smells terrible and tastes even worse. I have been guzzling Ensure all day just to keep up with calories and try to give myself energy.
The day started off fine. Dropping B at school, walking Z, getting B's winter clothes out and ready. Then that was it. Oh, I made a few phone calls and then needed a nap. I slept way too long because all I want to do is go back to sleep. I crept under the love quilt, after reading a book about God my brother-in-law sent my way, and it was snooze city. I didn't wake up until I heard Pat and Bennett come home - two hours later. Now I feel like a lump of unformed clay with a really bad taste in my mouth. You know everyone talks about getting a metallic taste in their mouths from chemo. Mine is just a really bad taste like I haven't brushed my teeth for about a month and the back of my tongue feels really fuzzy. It's pretty gross.
I have to return my pump tomorrow at 1:30 and see Dr. B. at 2. I would bet money he is late, but he is worth waiting for. My goal is to make sure we are on the same page in terms of my treatment. I feel a little adrift at the moment and need some reassurance that we working toward the same thing - my optimal care. I will feel better after talking to him, I know it in my heart.
Julie rescued me from having to drive myself to Worcester. She hooked me up with her friend Ann, who I have met a few times. I was so happy to hear that I had a ride that I cried. I was a little stressed about the drive on my own. It wouldn't have been bad if it was just returning the pump, but the whole seeing the doc and not knowing how long I am going to have to wait, etc. was making me worried about my stamina. Thank God for good friends and generous souls.
In other news, Pat's car came back from the mechanic with a note recommending "vehicle replacement." So we are on to getting another car. We have Holyoke Auto Center on the lookout for us and I sure they will get us what we want- a no-frills Subaru with all wheel drive. I want to AWD car to get us to Worcester this winter. That is my goal. Let's all pray for a mild winter with no ice storms. Okay!
That's about all I have for today. I am wicked beat and need to do something more restful than this - I can't even think what that could be . Maybe staring into space? Sleep, yeah, that's more like what I need.
The day started off fine. Dropping B at school, walking Z, getting B's winter clothes out and ready. Then that was it. Oh, I made a few phone calls and then needed a nap. I slept way too long because all I want to do is go back to sleep. I crept under the love quilt, after reading a book about God my brother-in-law sent my way, and it was snooze city. I didn't wake up until I heard Pat and Bennett come home - two hours later. Now I feel like a lump of unformed clay with a really bad taste in my mouth. You know everyone talks about getting a metallic taste in their mouths from chemo. Mine is just a really bad taste like I haven't brushed my teeth for about a month and the back of my tongue feels really fuzzy. It's pretty gross.
I have to return my pump tomorrow at 1:30 and see Dr. B. at 2. I would bet money he is late, but he is worth waiting for. My goal is to make sure we are on the same page in terms of my treatment. I feel a little adrift at the moment and need some reassurance that we working toward the same thing - my optimal care. I will feel better after talking to him, I know it in my heart.
Julie rescued me from having to drive myself to Worcester. She hooked me up with her friend Ann, who I have met a few times. I was so happy to hear that I had a ride that I cried. I was a little stressed about the drive on my own. It wouldn't have been bad if it was just returning the pump, but the whole seeing the doc and not knowing how long I am going to have to wait, etc. was making me worried about my stamina. Thank God for good friends and generous souls.
In other news, Pat's car came back from the mechanic with a note recommending "vehicle replacement." So we are on to getting another car. We have Holyoke Auto Center on the lookout for us and I sure they will get us what we want- a no-frills Subaru with all wheel drive. I want to AWD car to get us to Worcester this winter. That is my goal. Let's all pray for a mild winter with no ice storms. Okay!
That's about all I have for today. I am wicked beat and need to do something more restful than this - I can't even think what that could be . Maybe staring into space? Sleep, yeah, that's more like what I need.
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?
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.
Thursday, August 19, 2010
Maiden Voyage
Today was return the pump to Worcester day. My faithful friend Liz, who has been shuttling me back and forth to Worcester came down with a cold. Remembering my last post about not being around sick people, no matter how nice, Pat and I decided it was time for me to try to get to UMASS by myself. Luckily I woke up feeling great. I took Zeus for a longer walk than yesterday, made myself busy in the house while listening to Theo continue to work her magic on the trim in the bedroom. It looks beautiful and I am so happy the bedroom is coming along.
As luck would have it, one of Pat's colleagues sent to us a bag of things like the Harry Potter books on CD. I am pretty sure these items were meant for Bennett. But in all times of stress, I read Harry Potter. I am on #3, so I grabbed the CDs and off I went to Worcester at 12:15. It was great to have such good company. I wish Dumbledore lived in my house. Is it bad karma to wish that Dumbledore was my oncologist? I really like and trust Dr. Bathini, but there is something about Dumbledore - and I know you know what I mean.
I arrived exactly when the pump started beeping that the drugs were done, and in a blink of an eye they unhooked me. I have to say it was a little weird because they have to unlock it and unscrew it out of my skin - a little like a childproof cap. I meant to take pictures of the pump and the tubes into my chest so I could post them, but I forgot. Maybe some higher power was working on my memory to spare you all those photos. I will soon be posting pictures of me with my hair. It's longer than it's been in years.
Just in time to fall out. Good thing I like to knit. Good thing I have a nicely shaped head. I can say that confidently because I have had more than one hair dresser remark on it. We will soon find out...
So that's it medical treatment-wise until 8/31. Now I get to do the activities that I can manage as long as I stay out of the sun, out of hot tubs and take my meds every eight hours without fail.
I am super tired and am looking forward to a nice sleep. Keep me in your light.
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