Too tired to come up with anything clever, let alone descriptive. Since I have no idea what I am going to write about, this post will have to live with the name of no name.
I returned the pump today and got my shot. The WBC shot in my arm. Sue says I can expect to feel pretty rotten tomorrow but not to take to the bed. Ha! That is just what I plan to do if I feel bad. I may do some laundry and other house chores, but I am not going to do anything to exhaust myself. Can you exhaust yourself if you start out exhausted? Some of the more unusual side effects of the shot are pretty horrifying- blue lips and nails for one. I can't help but imagine a deep shade of turquoise. The one called "severe bone pain" is another one I would like to avoid. Sue says the most common bone pain is in the spine and sternum. I'll let you know if that happens to me.
Okay, mind shift. I cannot assume that I am going to feel rotten or be exhausted. I must believe that the day will bring what it will and that I will do what I can. Pat is going to work and Bennett is going with her for a time then on to a fun-filled day with Aunt Julie. That is the family plan for tomorrow. I will give you a full report tomorrow night.
Pray for an easy night for all of us. Miss B who is still in an angry phase, Pat who has been fighting a cold for almost two weeks, and for me just because.
Showing posts with label julie. Show all posts
Showing posts with label julie. Show all posts
Thursday, November 18, 2010
Sunday, October 24, 2010
Some Sunday
Today I went to church. I decided that I wanted to go to church this summer and Pat and I tried one. We didn't like it that much, and Bennett kept thinking we were going to the circus. "Where the circus, mama?" What a disappointment! So we didn't go back and took an inadvertent break.
We have a Lutheran Church down the street and I thought I'd give it a shot. I went by myself this time. It was very pleasant. I don't know what the Lutherans are about, but the pastor was super accessible and the service was interesting enough to keep me attentive. I'll go back next week and see what's it's like again. There may have been a touch too much about all of us as sinners for my taste, so I have to find out if that was just the sermon or the flavor of the church.
It was a big deal to go by myself. I wanted to go back to bed so bad, but then I joined Pat and B on the drive to Trader Joe's. I sat in the car and talked to my sister, Mary, while Pat did the shopping and B did the snacking. Mary is going to Africa next week for a seven days. I am going to miss our talks a lot, but good for her for getting away and relaxing. She's going to need to soak in all that warmth for when she comes back here in November or December. I am already looking forward to that visit.
After TJ's, B went to Aunt Liz and Aunt Jewwelie's for an afternoon of fun. Pat and I got to take a nap, I didn't really sleep, but was plagued by the bad voices. Mostly about what actually happens when a person dies "from cancer." I had a very poignant and helpful conversation with my mom who helped me understand that it tends to be a shutting down of the system - or as I put it, organ failure. My mom assured me that my father (who died from cancer) had a peaceful death and that the hospice angels made it that way. It was very very comforting and sad.
We then had a long conversation about the use of anti-anxiety meds. My doc has been telling me to take them as often as every four hours- that is Atavan or Lorazepam. I really try not to, thinking that I am cheating. I now believe that if I need to take something to stop myself for torturing myself (as my mom put it), that it is not cheating. So guess what? After I hung up the phone I took half a does and it made the entire evening more pleasant - and I believe more pleasant for everyone. And I am not torturing myself at all right now and it feels really good.
More good news is we finally found a home for the fish tank. Thanks for the always generous and fearless Aunt Liz. It is be a huge relief not to have to worry about the sheer neglect of those beings anymore. Thank goodness. They will go to their new home this week, phew.
And that's about it. Read books to B, posting, going to watch a little Top Chef season three and go to bed. All in all not a bad day. I think I am over the hump of being chemo-ized. I will know more tomorrow- and so will you.
We have a Lutheran Church down the street and I thought I'd give it a shot. I went by myself this time. It was very pleasant. I don't know what the Lutherans are about, but the pastor was super accessible and the service was interesting enough to keep me attentive. I'll go back next week and see what's it's like again. There may have been a touch too much about all of us as sinners for my taste, so I have to find out if that was just the sermon or the flavor of the church.
It was a big deal to go by myself. I wanted to go back to bed so bad, but then I joined Pat and B on the drive to Trader Joe's. I sat in the car and talked to my sister, Mary, while Pat did the shopping and B did the snacking. Mary is going to Africa next week for a seven days. I am going to miss our talks a lot, but good for her for getting away and relaxing. She's going to need to soak in all that warmth for when she comes back here in November or December. I am already looking forward to that visit.
After TJ's, B went to Aunt Liz and Aunt Jewwelie's for an afternoon of fun. Pat and I got to take a nap, I didn't really sleep, but was plagued by the bad voices. Mostly about what actually happens when a person dies "from cancer." I had a very poignant and helpful conversation with my mom who helped me understand that it tends to be a shutting down of the system - or as I put it, organ failure. My mom assured me that my father (who died from cancer) had a peaceful death and that the hospice angels made it that way. It was very very comforting and sad.
We then had a long conversation about the use of anti-anxiety meds. My doc has been telling me to take them as often as every four hours- that is Atavan or Lorazepam. I really try not to, thinking that I am cheating. I now believe that if I need to take something to stop myself for torturing myself (as my mom put it), that it is not cheating. So guess what? After I hung up the phone I took half a does and it made the entire evening more pleasant - and I believe more pleasant for everyone. And I am not torturing myself at all right now and it feels really good.
More good news is we finally found a home for the fish tank. Thanks for the always generous and fearless Aunt Liz. It is be a huge relief not to have to worry about the sheer neglect of those beings anymore. Thank goodness. They will go to their new home this week, phew.
And that's about it. Read books to B, posting, going to watch a little Top Chef season three and go to bed. All in all not a bad day. I think I am over the hump of being chemo-ized. I will know more tomorrow- and so will you.
Friday, October 22, 2010
Just Got Up
Yep, I just got up from bed- it's 6pm. I feel a little humanity returning, for which I am incredibly grateful. I was in bed all day, literally all day. Not watching movies, not reading books, just dozing and lying with my eyes closed. Is it laying or lying? I don't know. I am just happy to be up and feeling like maybe tomorrow will be better.
I will tell you what it's like. I've heard chemo described as God playing with gravity, and some days are just days you can't fight gravity and have to be horizontal. I mostly agree with that, but I more feel like the ray guns on Star Trek are set on stun and they got me. Otherwise I would want to read or watch a movie, it feels just like I've been stunned.
I had a very hard time with guilt today. I felt like an utter failure. That not being able to get out of bed is anathema to who I am, and I felt a deep sense of failure. This doesn't help at all. I also wondered if I might be clinically depressed, which happens to people who get cancer. I don't think so. I bet I will know more tomorrow. Both Mary and Pat reassured me that I am not a failure, that chemo is a hard thing to deal with and sometimes bed is the only answer.
Thank God for Pat being able to take Bennett to work at the last minute. Thank God for Ruth and Theo getting our veggies for us and thanks again to the highest power for Liz and Julie taking Bennett for an adventure in the afternoon. All of these folks pitched in so I could stay in bed and work on my WBC.
So many people called to see if I was okay, it was really a wonder to get so much help.
Last night I didn't post that Dr B agreed to the Neulasta if my WBC count if low at my next chemo. He called yesterday to tell me that he is working with the insurance company to get it okayed. He thinks he has a good case because I've already spent a week in the hospital due to a compromised immune system. Neulasta, I've read online, is between $3k and $7k a shot. I don't know why the range, but holy cow! that's a lot of money. Neulasta doesn't come without its side effects- 10% of users get severe bone pain and/or flu like symptoms. If you look at the glass half-full, that means 90% don't. I am going to cross my fingers and toes that I am in the 90%. So far I have lucked out on a lot of side effects - I've only barfed a few times and I don't have the diarrhea everyone talks about. That might be because I only eat soup and Ensure and the occasional yogurt. Anyway, I hope I will continue to luck out.
I feel like I have to say thanks to everyone for your support. This is going to be a long long long shitty process and I appreciate you all sticking with me. I think about it all the time, how important all this support is. How could I have gotten through this day if so many people didn't step in to help? So, thank you from the bottom of my super fast-beating heart.
I will tell you what it's like. I've heard chemo described as God playing with gravity, and some days are just days you can't fight gravity and have to be horizontal. I mostly agree with that, but I more feel like the ray guns on Star Trek are set on stun and they got me. Otherwise I would want to read or watch a movie, it feels just like I've been stunned.
I had a very hard time with guilt today. I felt like an utter failure. That not being able to get out of bed is anathema to who I am, and I felt a deep sense of failure. This doesn't help at all. I also wondered if I might be clinically depressed, which happens to people who get cancer. I don't think so. I bet I will know more tomorrow. Both Mary and Pat reassured me that I am not a failure, that chemo is a hard thing to deal with and sometimes bed is the only answer.
Thank God for Pat being able to take Bennett to work at the last minute. Thank God for Ruth and Theo getting our veggies for us and thanks again to the highest power for Liz and Julie taking Bennett for an adventure in the afternoon. All of these folks pitched in so I could stay in bed and work on my WBC.
So many people called to see if I was okay, it was really a wonder to get so much help.
Last night I didn't post that Dr B agreed to the Neulasta if my WBC count if low at my next chemo. He called yesterday to tell me that he is working with the insurance company to get it okayed. He thinks he has a good case because I've already spent a week in the hospital due to a compromised immune system. Neulasta, I've read online, is between $3k and $7k a shot. I don't know why the range, but holy cow! that's a lot of money. Neulasta doesn't come without its side effects- 10% of users get severe bone pain and/or flu like symptoms. If you look at the glass half-full, that means 90% don't. I am going to cross my fingers and toes that I am in the 90%. So far I have lucked out on a lot of side effects - I've only barfed a few times and I don't have the diarrhea everyone talks about. That might be because I only eat soup and Ensure and the occasional yogurt. Anyway, I hope I will continue to luck out.
I feel like I have to say thanks to everyone for your support. This is going to be a long long long shitty process and I appreciate you all sticking with me. I think about it all the time, how important all this support is. How could I have gotten through this day if so many people didn't step in to help? So, thank you from the bottom of my super fast-beating heart.
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.
Saturday, October 16, 2010
All is Well
Pat is gone for the weekend - or at least she was gone today and I haven't heard when she is planning to come home. There was some talk that she might come home in the wee hours of the night tonight. Of course, that would be my choice, but all and all B&I had a great day.
It started at 6am when Pat left. Bennett did not want to go back to sleep, but was content to play while I lolled around in bed until 8. What a great kid. We painted, we played, we took Zeus for a short walk (we were chilly and had to turn around). Midway through the morning B told me her hair was hurting her eyes, so I asked if she wanted a haircut. She said yes. I told her I would just do her bangs and when I was done with her bangs, she told me to cut the back. Now she looks like Amalie again (from the French movies, that I am sure I spelled wrong). Aunt Julie arrived at 1:30 to save the day and take B to the Eric Carle Museum. I got a nap and did some laundry. It was a good time.
A little tea and Dora and it was time for dinner and bed. B is sound asleep, I feel good. I feel like I accomplished something really big- I took care of B all day and have been diligently keeping my thoughts here, now. Bennett took a tumble today and hurt her lip, I was on the phone with Ruth and yelled into the phone, "I will call you back" and hung up. Five minutes later, Aunt Ruth to the rescue. So I had a lot of help and a lot of love today to get me through, but it hardly felt like something to get through. It just felt like life. My life. What a wonderful way to feel.
It started at 6am when Pat left. Bennett did not want to go back to sleep, but was content to play while I lolled around in bed until 8. What a great kid. We painted, we played, we took Zeus for a short walk (we were chilly and had to turn around). Midway through the morning B told me her hair was hurting her eyes, so I asked if she wanted a haircut. She said yes. I told her I would just do her bangs and when I was done with her bangs, she told me to cut the back. Now she looks like Amalie again (from the French movies, that I am sure I spelled wrong). Aunt Julie arrived at 1:30 to save the day and take B to the Eric Carle Museum. I got a nap and did some laundry. It was a good time.
A little tea and Dora and it was time for dinner and bed. B is sound asleep, I feel good. I feel like I accomplished something really big- I took care of B all day and have been diligently keeping my thoughts here, now. Bennett took a tumble today and hurt her lip, I was on the phone with Ruth and yelled into the phone, "I will call you back" and hung up. Five minutes later, Aunt Ruth to the rescue. So I had a lot of help and a lot of love today to get me through, but it hardly felt like something to get through. It just felt like life. My life. What a wonderful way to feel.
Friday, October 15, 2010
Quick Post - 30 Minutes or Less
I don't have a ton of time. I have exactly 30 minutes before I need to wake Pat up so we can have our after-Benett-goes-to-sleep time together. And tonight is especially important because Pat is leaving tomorrow for the weekend. She is going to her mom's memorial service in Western NY. In all the hullaballo surrounding me, Pat hasn't gotten the attention she deserves and it makes me really sad. Betty was a fine lady who lived a good and full life and I am glad I knew her. I will be bold and ask that you all pray in any way you do for a safe trip for Pat - and Betty too, while we're at it.
I had a particularly nice day today. It was rainy and B and I stayed in. We did a lot of nothing much. Just painted, read books, looked for more free children's eBooks (any ideas? I am coming up with a bunch of junk.). Bennett wanted her nails painted - a request out of the blue. Luckily we had green and red nail polish. Now B's toes are green and three of her fingers are red. The red nail polish actually washed off in the bath. I've never seen such a thing, usually it takes years to wear off. We napped and generally had a great time.
I think my super sad night last night helped me connect with B better today. I thought it might be the opposite - make me want to be less close because of my fear of loss. Yay for me, I didn't push her away. It was a lovely day.
My dear friends Ruth and Theo have colds, so are not allowed to come by this weekend. I will miss them while they take good care of themselves. We are all going to miss their usual visit- especially with Pat gone. Luckily I just set up a Skype account and know how to call Ruth. Let me know if you want me account name and we can Skype together.
I don't have much else to report. I ordered my annual pair of birthday shoes from my mom about a month late. They came less than 24 hours later. How do they do that? Why doesn't Holyoke have a Internet grocery service? My sister who lives in England, in what Google maps makes look like the middle of nowhere, has it. This area seems like just the right neighborhood for grocery delivery and a Trader Joe's in the Holyoke mall, maybe next to Barnes and Noble, while we are thinking wishfully.
I am sick of my own sad cooking. Not being allowed to touch fruits and veg make it hard to come up with tasty food from scratch - actually impossible. Anyone out there want to make some smooth, high calorie soup for me? It just has to be smooth and tasty.
This seems like a post where I want people to do things for me. Pray for Pat, deliver my groceries, bring me new shoes, make me soup. Odd when I usually am so independent. Things have really changed in the past few months. I would have never asked anyone to do anything for me - but now it's really the only way I can thrive/survive. What would I do without Theo's beef broth? What would I do without R&T getting our farm share for us every week - not that I can touch any of it, but still. What would I do without Liz and Julie at the ready to take Bennett? There are so many to be grateful to, I can't list them. Thank you all. Really, that's all I can say. Three minutes to spare.
I had a particularly nice day today. It was rainy and B and I stayed in. We did a lot of nothing much. Just painted, read books, looked for more free children's eBooks (any ideas? I am coming up with a bunch of junk.). Bennett wanted her nails painted - a request out of the blue. Luckily we had green and red nail polish. Now B's toes are green and three of her fingers are red. The red nail polish actually washed off in the bath. I've never seen such a thing, usually it takes years to wear off. We napped and generally had a great time.
I think my super sad night last night helped me connect with B better today. I thought it might be the opposite - make me want to be less close because of my fear of loss. Yay for me, I didn't push her away. It was a lovely day.
My dear friends Ruth and Theo have colds, so are not allowed to come by this weekend. I will miss them while they take good care of themselves. We are all going to miss their usual visit- especially with Pat gone. Luckily I just set up a Skype account and know how to call Ruth. Let me know if you want me account name and we can Skype together.
I don't have much else to report. I ordered my annual pair of birthday shoes from my mom about a month late. They came less than 24 hours later. How do they do that? Why doesn't Holyoke have a Internet grocery service? My sister who lives in England, in what Google maps makes look like the middle of nowhere, has it. This area seems like just the right neighborhood for grocery delivery and a Trader Joe's in the Holyoke mall, maybe next to Barnes and Noble, while we are thinking wishfully.
I am sick of my own sad cooking. Not being allowed to touch fruits and veg make it hard to come up with tasty food from scratch - actually impossible. Anyone out there want to make some smooth, high calorie soup for me? It just has to be smooth and tasty.
This seems like a post where I want people to do things for me. Pray for Pat, deliver my groceries, bring me new shoes, make me soup. Odd when I usually am so independent. Things have really changed in the past few months. I would have never asked anyone to do anything for me - but now it's really the only way I can thrive/survive. What would I do without Theo's beef broth? What would I do without R&T getting our farm share for us every week - not that I can touch any of it, but still. What would I do without Liz and Julie at the ready to take Bennett? There are so many to be grateful to, I can't list them. Thank you all. Really, that's all I can say. Three minutes to spare.
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