So here's the short of it,
I'm growing stronger and feeling better.
And here's the long
Today has been a relatively good day. I'm getting stronger, my diarrhea is abating, and I'm able to eat and drink most anything I want. My taste is still pretty off, but it's coming back bit by bit. I'm really appreciative to Sally for the advice about Life Water. I really needed an alternative to unsweetened tea! I still can't really drink water like I used to. But now that I'm finished with my Chemo, I'm looking forward to my taste for water returning!
I'm taking Zertec over the counter and my cough is much better today although certainly not gone. My feet are not any better. I am grateful for sure that my fingers and hands are not as bad as my feet. Today Alan and I were working on Mom's kitchen cabinet and one of my jobs was to hand Alan the screws since he was up on the ladder. (My feet would never have worked balancing on that ladder!) Anyway, I had trouble just reaching into the baggie and taking out two screws because my fingers are so bummed up with this neuropathy. I'm also not able to go barefoot at all as much as I love it. Today I stepped on a sharp pebble and hardly felt it. I think it would be way too dangerous for me to be barefoot especially with my platelets so low.
Tonight was Halloween. Early in the evening before the Trick or Treating started, a couple of Sophie's playmate neighbor dogs were out in costume! We had a cute (really big) turtle, and a really cute miniature daschund dressed up as a hot dog! We had over 100 really cute Trick or Treaters. This was Sophie's first Halloween and she worked really hard! She let me know every single time someone was coming to the door with a low woof-woof, not really even a bark. She is so timid about new things; I'm sure she didn't know what to make of the wierd looking creatures coming to the door. Our own neighborhood kids sure were dressed up cute. I always enjoy seeing the kids. We called it quits at 9:00 and shut down the lights and it was just in time - the candy was about to run out!
I feel so good that I'm actually having to remind myself that my blood counts are still really low and I can't just go out and do normal things. I'm going to sleep in tomorrow and try to have a relaxing day. Liga already did the grocery shopping for us, so I don't have anything pressing to do. I'll plan to putter around the house if I have energy, but I'm planning to work next week so I'm going to make sure not to wear myself out.
Saturday, October 31, 2009
Friday, October 30, 2009
Car, Feet, Cough
So here's the short of it,
Alan has a new car, my feet are still yucky, and my cough has returned.
And here's the long
I had a pretty good day today. First of all, I allowed myself to just sleep until I naturally woke up. I have a dim memory of Alan telling me he was leaving sometime in the AM, but I went right back to sleep. By the time I woke up the morning was half over! Alan had gone to make the deal on the blue car.
A bit of back story is important here. Last weekend when Alan and my brothers took Mom down to B&F to look for a car, they saw a blue convertible. Since I've known Alan, he's always admired convertibles. This just seemed like the right time, the right car, the right price. So I've been encouraging him since last weekend to go test drive it and think about getting it.
It's a great car. It's got really zippy pick up. I enjoyed riding in it, and bet I'll like driving it too. So maybe I'll be going to my next doctor's appointment in a convertible.
Alan took me for a drive this afternoon with the top down; it'll be really nice to drive with the top down when the weather's nice.
My feet and hands are about the same - if anything, they may be a little worse. I've upped my medicine, but don't see a difference. Tonight they feel like I've been out in the cold and my feet have gotten so cold I can't feel them any more, and then I've come in and they've started to thaw out. It's uncomfortable. I'm taking ibuprofen as well as generic Elavil. If the Elavil doesn't help, I think they can try Neurontin. I'm uncomfortable enough that I will press on this. I'm also worried enough that it doesn't seem to be getting any better. As I tried to read about it, it seems that even though it's a pretty common side effect the actual way people experience it greatly varies. It actually seems that I'm having a range of symptoms. Sometimes it's pretty bad, sometimes I can kind of ignore it. And from day to day or even hour to hour it feels different.
My cough came back this evening. I've not coughed much this week, and suddenly this evening it started back. I'll dose myself up good with cough medicine before I go to bed tonight and hopefully, I'll be better tomorrow.
Alan has a new car, my feet are still yucky, and my cough has returned.
And here's the long
I had a pretty good day today. First of all, I allowed myself to just sleep until I naturally woke up. I have a dim memory of Alan telling me he was leaving sometime in the AM, but I went right back to sleep. By the time I woke up the morning was half over! Alan had gone to make the deal on the blue car.
It's a great car. It's got really zippy pick up. I enjoyed riding in it, and bet I'll like driving it too. So maybe I'll be going to my next doctor's appointment in a convertible.
Alan took me for a drive this afternoon with the top down; it'll be really nice to drive with the top down when the weather's nice.
My feet and hands are about the same - if anything, they may be a little worse. I've upped my medicine, but don't see a difference. Tonight they feel like I've been out in the cold and my feet have gotten so cold I can't feel them any more, and then I've come in and they've started to thaw out. It's uncomfortable. I'm taking ibuprofen as well as generic Elavil. If the Elavil doesn't help, I think they can try Neurontin. I'm uncomfortable enough that I will press on this. I'm also worried enough that it doesn't seem to be getting any better. As I tried to read about it, it seems that even though it's a pretty common side effect the actual way people experience it greatly varies. It actually seems that I'm having a range of symptoms. Sometimes it's pretty bad, sometimes I can kind of ignore it. And from day to day or even hour to hour it feels different.
My cough came back this evening. I've not coughed much this week, and suddenly this evening it started back. I'll dose myself up good with cough medicine before I go to bed tonight and hopefully, I'll be better tomorrow.
Thursday, October 29, 2009
More on Neuropathy
So here's the short of it,
More thoughts on neuropathy.
And here's the long
Today I'm feeling pretty OK, but I've got a chill, my feet are really bothering me and I feel a bit of tightness in my chest. I am so grateful that I'm heading on the uphill road from Chemotherapy. I may just stay in tomorrow and try to rest and relax.
I worked for awhile this morning. We are losing a teacher to retirement (I'm so happy for her), and need to have someone ready to step into that position right away. So I went in to do some screenings. My work buddies took really good care of me. All the people we spoke to were told ahead of time that I couldn't shake hands, Alecia wiped down the conference table before I went in, and they were very watchful to make sure I wasn't overdoing. I didn't open any doors or touch anything and I was really attentive to not doing anything to get germs!
My feet are continuing to give me problems. I'm experiencing a pins and needles feeling every once in awhile. It's like when my feet have gone to sleep and I'm trying to put weight on them. When they're not feeling like that, they feel really strange. They feel swollen, and I really don't have a good sense of where they are. It makes walking hard; I find it very frustrating. I am beginning to notice this in my fingers and particularly my thumbs as well as in the palms of my hands.One of my frustrations about all this is the story I keep hearing that it takes a long time to go away.
I am really pretty exhausted and think I'll probably not have much trouble sleeping tonight.
More thoughts on neuropathy.
And here's the long
Today I'm feeling pretty OK, but I've got a chill, my feet are really bothering me and I feel a bit of tightness in my chest. I am so grateful that I'm heading on the uphill road from Chemotherapy. I may just stay in tomorrow and try to rest and relax.
I worked for awhile this morning. We are losing a teacher to retirement (I'm so happy for her), and need to have someone ready to step into that position right away. So I went in to do some screenings. My work buddies took really good care of me. All the people we spoke to were told ahead of time that I couldn't shake hands, Alecia wiped down the conference table before I went in, and they were very watchful to make sure I wasn't overdoing. I didn't open any doors or touch anything and I was really attentive to not doing anything to get germs!
My feet are continuing to give me problems. I'm experiencing a pins and needles feeling every once in awhile. It's like when my feet have gone to sleep and I'm trying to put weight on them. When they're not feeling like that, they feel really strange. They feel swollen, and I really don't have a good sense of where they are. It makes walking hard; I find it very frustrating. I am beginning to notice this in my fingers and particularly my thumbs as well as in the palms of my hands.One of my frustrations about all this is the story I keep hearing that it takes a long time to go away.
I am really pretty exhausted and think I'll probably not have much trouble sleeping tonight.
Wednesday, October 28, 2009
Neuropathy and Port Problems
So here's the short of it,
My port tip has moved and my neuropathy continues.
And here's the long
Last week this time, I reported that I had a chest x-ray, and that if there was any news about my cough they'd let me know. In other words, no news is good news. Well, today I got the news. My horrible cough caused my port tip to get out of place. I'll have to have a procedure to fix it before it can be used again. I'm not sure exactly what they'll do, but it is some kind of surgical procedure because it can't be done until my blood counts return to a more normal level. In the meantime, my weekly Herceptin treatments will have to be done through an IV into a vein instead of using my port. I much prefer the port. The IV just hurts a bit no matter how well it's done.
Blood counts today are really low - white counts low, platelets low, red blood cells low. But I feel better than I have at a week out on any of my previous cycles.
My neuropathy continues to be a concern. My feet feel pretty strange - a better description might be that my feet don't feel. I'm supposed to increase the medicine prescribed for it and increase again by taking it in the morning on the weekend. I'm to wait until the weekend because sometimes it makes people sleepy. So I'll try it in the AM on Saturday and Sunday and see what happens. I'll double what I was taking in the evening, and maybe it will make me sleepy enough to go off to sleep! Lori has really warned me to be very careful. Apparently it is not at all uncommon for people to fall or injure their feet because of the loss of feeling. I can easily see that. It's a bit hard to know where my feet are sometimes. The other concern is that neuropathy takes some time to go away. Sometimes a long time. I'm beginning to feel it in my fingers and particularly my thumbs as well as just a bit in the palms of my hands. Apparently the Abraxane, which I got the last two treatments instead of the Taxotere, may have the advantage of having the neuropathy last less long. I'm to report every week how I'm doing so they can chart how quickly it is improving. A couple of my chemo sisters have told me that even several years out they still had problems. Lori confirmed it - many people have very long lasting problems with neuropathy. I'm optimistic that the switch to Abraxane has given me an advantage and I'll start improving soon.
My port tip has moved and my neuropathy continues.
And here's the long
Last week this time, I reported that I had a chest x-ray, and that if there was any news about my cough they'd let me know. In other words, no news is good news. Well, today I got the news. My horrible cough caused my port tip to get out of place. I'll have to have a procedure to fix it before it can be used again. I'm not sure exactly what they'll do, but it is some kind of surgical procedure because it can't be done until my blood counts return to a more normal level. In the meantime, my weekly Herceptin treatments will have to be done through an IV into a vein instead of using my port. I much prefer the port. The IV just hurts a bit no matter how well it's done.
Blood counts today are really low - white counts low, platelets low, red blood cells low. But I feel better than I have at a week out on any of my previous cycles.
My neuropathy continues to be a concern. My feet feel pretty strange - a better description might be that my feet don't feel. I'm supposed to increase the medicine prescribed for it and increase again by taking it in the morning on the weekend. I'm to wait until the weekend because sometimes it makes people sleepy. So I'll try it in the AM on Saturday and Sunday and see what happens. I'll double what I was taking in the evening, and maybe it will make me sleepy enough to go off to sleep! Lori has really warned me to be very careful. Apparently it is not at all uncommon for people to fall or injure their feet because of the loss of feeling. I can easily see that. It's a bit hard to know where my feet are sometimes. The other concern is that neuropathy takes some time to go away. Sometimes a long time. I'm beginning to feel it in my fingers and particularly my thumbs as well as just a bit in the palms of my hands. Apparently the Abraxane, which I got the last two treatments instead of the Taxotere, may have the advantage of having the neuropathy last less long. I'm to report every week how I'm doing so they can chart how quickly it is improving. A couple of my chemo sisters have told me that even several years out they still had problems. Lori confirmed it - many people have very long lasting problems with neuropathy. I'm optimistic that the switch to Abraxane has given me an advantage and I'll start improving soon.
Tuesday, October 27, 2009
Herceptin
So here's the short of it,
Thoughts about Herceptin
And here's the long
I felt well enough to go to work today. I did go in late morning and just went to W. 40th street, but I stayed and got in a good half day work. I don't have a lot of stamina to do much besides e-mail, correspondence, and checking on work in progress, but I did get quite a bit done. I'm planning to go to work again tomorrow for awhile. I have a Herceptin infusion tomorrow afternoon, so I'll need to get to work in time to get my time in and be able to leave for the treatment. I'll have to get on a regular schedule for this, since it will be once a week for the rest of the year. Tomorrow we'll talk about what time of day is best for them. I'm thinking that for the time I'm doing radiation, I want to line it up with the time those appointments are, and then after that I can think about having it first thing in the AM, at lunch or right at the end of the day. I hope one of those times works for them!
Alan and I went down and had dinner with Mom and Russ this evening. She made Salmon cakes and her famous fried corn and some asparagus. I made some roasted beets and took some cottage cheese. It was a nice supper and we broke open a bag of Halloween candy for dessert! I'll be glad when I'm feeling well enough to have her up here for a dinner I've fixed!
I'm feeling so much better this treatment cycle than I've felt for any of the previous ones. A part of me keeps thinking that when I get to the office tomorrow, they'll tell me they forgot one of the medicines, or that they gave me too low a dose. My feet are really in pretty bad shape now. It's hard to walk around much because I don't have a good sense of where my feet are on the floor, and they hurt, and they feel numb. I know that sounds like an oxymoron, but it's still true. I think they've gotten worse every day since about Saturday. Tomorrow I'll get some advise about what to do. So far my hands and fingers are not so severe. I do have some noticeable neuropathy in my fingers and the palms of my hands though. Tonight without thinking I flicked at a really tiny little scab on my arm and it absolutely would not quit bleeding. So I'm going to guess that when they run my labs tomorrow, my platelets will be low again. Maybe they can just let them get back to normal on their own since I won't be having anymore chemo drugs.
I was trying to talk tonight about the difference between Chemo and Herceptin. The Herceptin shouldn't cause all the horrible side effects that Chemo has been giving me. Now I'm not assuming that it will be a walk in the park, and I'll be sure to keep the blog updated about how it is all going. But as I understand it, the Herceptin is specifically made to seek out cells which produce too much HER2 protein. It somehow turns off the signals which make these cells do that. So, I'm up for wearing a button up shirt once a week and going down to the infusion room and getting my port hooked up for a dose of Herceptin! I am getting to like all those folks so much anyway it will be great to keep seeing them for awhile.
Thoughts about Herceptin
And here's the long
I felt well enough to go to work today. I did go in late morning and just went to W. 40th street, but I stayed and got in a good half day work. I don't have a lot of stamina to do much besides e-mail, correspondence, and checking on work in progress, but I did get quite a bit done. I'm planning to go to work again tomorrow for awhile. I have a Herceptin infusion tomorrow afternoon, so I'll need to get to work in time to get my time in and be able to leave for the treatment. I'll have to get on a regular schedule for this, since it will be once a week for the rest of the year. Tomorrow we'll talk about what time of day is best for them. I'm thinking that for the time I'm doing radiation, I want to line it up with the time those appointments are, and then after that I can think about having it first thing in the AM, at lunch or right at the end of the day. I hope one of those times works for them!
Alan and I went down and had dinner with Mom and Russ this evening. She made Salmon cakes and her famous fried corn and some asparagus. I made some roasted beets and took some cottage cheese. It was a nice supper and we broke open a bag of Halloween candy for dessert! I'll be glad when I'm feeling well enough to have her up here for a dinner I've fixed!
I'm feeling so much better this treatment cycle than I've felt for any of the previous ones. A part of me keeps thinking that when I get to the office tomorrow, they'll tell me they forgot one of the medicines, or that they gave me too low a dose. My feet are really in pretty bad shape now. It's hard to walk around much because I don't have a good sense of where my feet are on the floor, and they hurt, and they feel numb. I know that sounds like an oxymoron, but it's still true. I think they've gotten worse every day since about Saturday. Tomorrow I'll get some advise about what to do. So far my hands and fingers are not so severe. I do have some noticeable neuropathy in my fingers and the palms of my hands though. Tonight without thinking I flicked at a really tiny little scab on my arm and it absolutely would not quit bleeding. So I'm going to guess that when they run my labs tomorrow, my platelets will be low again. Maybe they can just let them get back to normal on their own since I won't be having anymore chemo drugs.
I was trying to talk tonight about the difference between Chemo and Herceptin. The Herceptin shouldn't cause all the horrible side effects that Chemo has been giving me. Now I'm not assuming that it will be a walk in the park, and I'll be sure to keep the blog updated about how it is all going. But as I understand it, the Herceptin is specifically made to seek out cells which produce too much HER2 protein. It somehow turns off the signals which make these cells do that. So, I'm up for wearing a button up shirt once a week and going down to the infusion room and getting my port hooked up for a dose of Herceptin! I am getting to like all those folks so much anyway it will be great to keep seeing them for awhile.
Monday, October 26, 2009
Birthday
So here's the short of it,
Birthday thoughts.
And here's the long
Today is my birthday. I am so grateful that on my birthday there is a high possibility that I am finished with the Abraxane and Carboplatin treatments. If yesterday and today are any indication, this last cycle the awful side effects will last less long. The newer side effects are uncomfortable and very present, but not so debilitating.
The neuropathy in my feet and toes make walking a bit like the first time you walk barefoot over a rough surface in the spring. One of my chemo sisters who is about 5 years out told me today that she still has residual effects from the foot neuropathy. Apparently it is one of the things that can have a lingering effect. I'm still achy bone deep, but the ibuprofen is helping with that somewhat. My diarrhea for the last day and a half has been kind of a controlled variety. Enough signal and time to get to a facility if I hurry real fast. My mouth sores are almost gone, my gums aren't bleeding much at all. The tiredness...now that's still very present. I'm just so tired of being tired! Hair - I don't even consider the hair loss a side effect at this point.
I had a great birthday present today. I went in to work for a meeting with our friends from Facing History and Ourselves. We were able to finalize plans to implement a pilot in several of our 8th grades for a program called Choices in Little Rock. It's a program that I'm really excited about that helps students link history to their own moral choices in their world. Anyway, it was like a great birthday gift to see that coming together.
Today is the first birthday in my life without my Dad. I had a beautiful card from Mom, but it was so strange to have a card that was not signed Love Mother and Daddy. I found a poem Dad wrote and put on the inside of one of my birthday cards a few years ago - I posted it on Emily and Gene's blog. I know this will be the first of many of those year markers to experience without Dad. I feel so blessed to have had him as a father and to have had him in our lives as long as we did. And I feel incredibly blessed that we still have Mom. She is an amazing woman and is a continued source of strength to all of us. I also feel so very lucky that she and Dad decided to move to Chattanooga 6 years ago. So there she is, down the road and around the corner. I can drive by on the way to work and see if she's up, if the light is on, or if she's decided to sleep in late. We can call to check up and if we need her or she needs us, we are close by. It is such a comfort that she is not still living 4 hours away!
Birthday thoughts.
And here's the long
Today is my birthday. I am so grateful that on my birthday there is a high possibility that I am finished with the Abraxane and Carboplatin treatments. If yesterday and today are any indication, this last cycle the awful side effects will last less long. The newer side effects are uncomfortable and very present, but not so debilitating.
The neuropathy in my feet and toes make walking a bit like the first time you walk barefoot over a rough surface in the spring. One of my chemo sisters who is about 5 years out told me today that she still has residual effects from the foot neuropathy. Apparently it is one of the things that can have a lingering effect. I'm still achy bone deep, but the ibuprofen is helping with that somewhat. My diarrhea for the last day and a half has been kind of a controlled variety. Enough signal and time to get to a facility if I hurry real fast. My mouth sores are almost gone, my gums aren't bleeding much at all. The tiredness...now that's still very present. I'm just so tired of being tired! Hair - I don't even consider the hair loss a side effect at this point.
I had a great birthday present today. I went in to work for a meeting with our friends from Facing History and Ourselves. We were able to finalize plans to implement a pilot in several of our 8th grades for a program called Choices in Little Rock. It's a program that I'm really excited about that helps students link history to their own moral choices in their world. Anyway, it was like a great birthday gift to see that coming together.
Today is the first birthday in my life without my Dad. I had a beautiful card from Mom, but it was so strange to have a card that was not signed Love Mother and Daddy. I found a poem Dad wrote and put on the inside of one of my birthday cards a few years ago - I posted it on Emily and Gene's blog. I know this will be the first of many of those year markers to experience without Dad. I feel so blessed to have had him as a father and to have had him in our lives as long as we did. And I feel incredibly blessed that we still have Mom. She is an amazing woman and is a continued source of strength to all of us. I also feel so very lucky that she and Dad decided to move to Chattanooga 6 years ago. So there she is, down the road and around the corner. I can drive by on the way to work and see if she's up, if the light is on, or if she's decided to sleep in late. We can call to check up and if we need her or she needs us, we are close by. It is such a comfort that she is not still living 4 hours away!
Sunday, October 25, 2009
So here's the short of it,
Meandering thoughts tonight.
And here's the long
Last night I was afflicted by having slept for most of three days. I couldn't go to sleep until the wee morning hours. My feet, legs, pelvis, and lower back are achy way into the bone, but not so horrible to be really complaining, and I think it's just the Abraxane and will got away in the next few days. But when I'm lying still and trying to sleep I really do notice it, even with the ibprofen I'm supposed to take for it. The neuropathy in the bottoms of my feet is as bad as it's been. I'm being extra cautious - not walking around barefoot which I love, because I really can't feel much, but I'm just mostly being annoyed with it. My feet are tingly, hot, and have very little feeling in them. Occassionally I get these stabbing kinds of pain in my feet. It's really strange. This is mostly in the balls of my feet and the bottoms of my toes. My cough has mostly disappeared since my last treatment which seems pretty bizarre. Of course since I slept very little last night, I've napped off and on all day. I'm in the place now, since this is my last treatment (fingers crossed), that I need to get that days and nights mixed up stuff straightened out. So I'll have to start working on that.
This afternoon Mom and my brothers went to church, and afterwards Alan and I met them at the cemetery. I hadn't been in over a week. Joyce was on her way, driving down from Knoxville for the afternoon and met us there. Dad's headstone has been placed. It's exactly right - the headstone that is. It's also exactly wrong - it really still feels awfully wrong that Dad is not with us.
This weekend Mom and the boys have slogged through a bunch of business stuff that needed to be taken care of with lots of help from Alan and Pat. Of course, I haven't been able to be of much help at all. They are taking a look at what to do about her car, her business stuff, and of course, everything that has to be done when a spouse dies. Mom is an amazingly strong woman, but this will be a difficult adjustment. My own loss of my Dad seems so overwhelming; I can't even imagine the loss of a spouse you've loved and cherished since teen age years, have shared life with, and raised a family with.
Meandering thoughts tonight.
And here's the long
Last night I was afflicted by having slept for most of three days. I couldn't go to sleep until the wee morning hours. My feet, legs, pelvis, and lower back are achy way into the bone, but not so horrible to be really complaining, and I think it's just the Abraxane and will got away in the next few days. But when I'm lying still and trying to sleep I really do notice it, even with the ibprofen I'm supposed to take for it. The neuropathy in the bottoms of my feet is as bad as it's been. I'm being extra cautious - not walking around barefoot which I love, because I really can't feel much, but I'm just mostly being annoyed with it. My feet are tingly, hot, and have very little feeling in them. Occassionally I get these stabbing kinds of pain in my feet. It's really strange. This is mostly in the balls of my feet and the bottoms of my toes. My cough has mostly disappeared since my last treatment which seems pretty bizarre. Of course since I slept very little last night, I've napped off and on all day. I'm in the place now, since this is my last treatment (fingers crossed), that I need to get that days and nights mixed up stuff straightened out. So I'll have to start working on that.
This afternoon Mom and my brothers went to church, and afterwards Alan and I met them at the cemetery. I hadn't been in over a week. Joyce was on her way, driving down from Knoxville for the afternoon and met us there. Dad's headstone has been placed. It's exactly right - the headstone that is. It's also exactly wrong - it really still feels awfully wrong that Dad is not with us.
This weekend Mom and the boys have slogged through a bunch of business stuff that needed to be taken care of with lots of help from Alan and Pat. Of course, I haven't been able to be of much help at all. They are taking a look at what to do about her car, her business stuff, and of course, everything that has to be done when a spouse dies. Mom is an amazingly strong woman, but this will be a difficult adjustment. My own loss of my Dad seems so overwhelming; I can't even imagine the loss of a spouse you've loved and cherished since teen age years, have shared life with, and raised a family with.
Saturday, October 24, 2009
Feeling Better - Relatively
So here's the short of it,
This has been a better day three.
And here's the long
Today has been a better day for sure even though I did stay in bed all morning and up into the afternoon. I still have the unrelenting diarrhea, but at least I've had time to get to the bathroom today -even as slowly as I'm moving. A newer symptom I'm having is an achy feeling like down in my bones. The Abraxane is can cause aching muscles and joints, so maybe that's it.
Russ, Steve and Pat, Alan, and Mom went to lunch at Applebees today, and when Alan called to see what I wanted, I had him bring mashed potatoes. It seems that's always safe. That's the first solid food I've had since yesterday's potatoes and cornbread. Later in the day he made a trip to Starbucks and brought me a chai tea latte. I've really got to work on getting more liquids in! I can tell from the small amount of urine I'm producing that I'm not drinking enough. Every time I'm out of bed, I'm trying to drink a glass of diluted juice or tea. It just doesn't seem to be enough. One of my chemo sisters suggested Life Water in a post comment. I've got that on the grocery list and will try that tomorrow.
Tonight, Alan drove me down to Mom's (in my pajamas) and I had dinner with the whole crew - Mom's cornbread with soup broth and some potatoes and carrots from the soup and unsweetened tea. Then I sat there at the table and visited with everyone. I started having one of the hot flashes that come and go with the chills and took my toboggan off, and began fanning myself. Russ, got up and grabbed some ice from a cup and rubbed it all over my head. I may try that again sometime! The visit sure was nice and we got a couple of business things discussed, but I am really tired! When I got home, I sat down in the recliner. It seems to take some of the pressure off the spots which become so tender when I've been abed for so long! I'll try to stay here for a bit longer even though sleep is beckoning.
Day three has been the worst day in the past, but it hasn't been so today. I'm not going to claim any turning of corners and all that, because I know full well that tomorrow could be different. I will take this fairly good day for what it is - a fairly good day - and worry about tomorrow when it comes.
This is totally off topic, but my Uncle Bob sent me a great video clip today of a nature film which captures one of those moments in nature that may be difficult to watch. It's a cougar and a bear -
This has been a better day three.
And here's the long
Today has been a better day for sure even though I did stay in bed all morning and up into the afternoon. I still have the unrelenting diarrhea, but at least I've had time to get to the bathroom today -even as slowly as I'm moving. A newer symptom I'm having is an achy feeling like down in my bones. The Abraxane is can cause aching muscles and joints, so maybe that's it.
Russ, Steve and Pat, Alan, and Mom went to lunch at Applebees today, and when Alan called to see what I wanted, I had him bring mashed potatoes. It seems that's always safe. That's the first solid food I've had since yesterday's potatoes and cornbread. Later in the day he made a trip to Starbucks and brought me a chai tea latte. I've really got to work on getting more liquids in! I can tell from the small amount of urine I'm producing that I'm not drinking enough. Every time I'm out of bed, I'm trying to drink a glass of diluted juice or tea. It just doesn't seem to be enough. One of my chemo sisters suggested Life Water in a post comment. I've got that on the grocery list and will try that tomorrow.
Tonight, Alan drove me down to Mom's (in my pajamas) and I had dinner with the whole crew - Mom's cornbread with soup broth and some potatoes and carrots from the soup and unsweetened tea. Then I sat there at the table and visited with everyone. I started having one of the hot flashes that come and go with the chills and took my toboggan off, and began fanning myself. Russ, got up and grabbed some ice from a cup and rubbed it all over my head. I may try that again sometime! The visit sure was nice and we got a couple of business things discussed, but I am really tired! When I got home, I sat down in the recliner. It seems to take some of the pressure off the spots which become so tender when I've been abed for so long! I'll try to stay here for a bit longer even though sleep is beckoning.
Day three has been the worst day in the past, but it hasn't been so today. I'm not going to claim any turning of corners and all that, because I know full well that tomorrow could be different. I will take this fairly good day for what it is - a fairly good day - and worry about tomorrow when it comes.
This is totally off topic, but my Uncle Bob sent me a great video clip today of a nature film which captures one of those moments in nature that may be difficult to watch. It's a cougar and a bear -
Friday, October 23, 2009
So here's the short of it,
Nausea, diarrhea, and sleep
And here's the long
I took my last dose of Emend this morning. Most of the day I've been in my bed - sleeping much of the time. I guess the Emend contributes to the fatigue and all. When I got up to visit the bathroom or go get a drink, I would get light-headed and nauseous. So I've made myself just stay in bed. My whole body began to ache from not being able to find a position I hadn't worn out! So about 6:30 or so, I came into the den and got into a recliner. I've done OK with that.
I had an awful catastrophe with my diarrhea late this morning. I was sound asleep and woke up when it began. I had to just go get in the shower and get myself and my clothes cleaned up. Yucky. I think about how much personal dignity is involved in being able to control our own bladder and bowels - it makes me a little more humble.
This evening Mom sent a plate - she had Russ, Steve and Pat, and Alan for dinner - and I ate a piece of cornbread and two potatoes. So far so good. I'm so fatigued. I can hardly walk from one room to the other without being exhausted, and I am so tired of sitting or lying. I know that in a few more days, I'll start to feel a little better and a little better.
I'm feeling especially yucky that my brothers are here, and I don't feel well enough to visit with them and help tackle some of the issues that they are here to settle. That might be another lesson I need to be learning in all of this. I might need to learn to let go of things from time to time.
I'm really tired. I hope I can find a comfortable way to stretch out in the bed. I've been up about three and a half hours and I really do believe that's all I can manage today.
Nausea, diarrhea, and sleep
And here's the long
I took my last dose of Emend this morning. Most of the day I've been in my bed - sleeping much of the time. I guess the Emend contributes to the fatigue and all. When I got up to visit the bathroom or go get a drink, I would get light-headed and nauseous. So I've made myself just stay in bed. My whole body began to ache from not being able to find a position I hadn't worn out! So about 6:30 or so, I came into the den and got into a recliner. I've done OK with that.
I had an awful catastrophe with my diarrhea late this morning. I was sound asleep and woke up when it began. I had to just go get in the shower and get myself and my clothes cleaned up. Yucky. I think about how much personal dignity is involved in being able to control our own bladder and bowels - it makes me a little more humble.
This evening Mom sent a plate - she had Russ, Steve and Pat, and Alan for dinner - and I ate a piece of cornbread and two potatoes. So far so good. I'm so fatigued. I can hardly walk from one room to the other without being exhausted, and I am so tired of sitting or lying. I know that in a few more days, I'll start to feel a little better and a little better.
I'm feeling especially yucky that my brothers are here, and I don't feel well enough to visit with them and help tackle some of the issues that they are here to settle. That might be another lesson I need to be learning in all of this. I might need to learn to let go of things from time to time.
I'm really tired. I hope I can find a comfortable way to stretch out in the bed. I've been up about three and a half hours and I really do believe that's all I can manage today.
Thursday, October 22, 2009
Sleepy
So here's the short of it,
A sleepy day
And here's the long
Today, the day after treatment. Alan went to the pharmacy as soon as it opened and got my big guns anti-nausea medicine. By the time I was really up, it was here. As soon as I took it I went back to sleep. I've been asleep most of the day until about 6:00pm tonight. Every time I opened my eyes between naps, Sophie and Lola were napping in their "guard Mom" spot - Sophie on the floor near me and Lola curled up at my feet. I did wake to go to the bathroom and to get something to drink a couple of times. Alan was out most of the day, and at one point brought home a chai tea latte from Starbucks for me. I was able to drink a mug full of that. I've also had a couple of small glasses of diluted grape juice. I'm really trying hard to stay hydrated.
I don't think I'll have any trouble going to sleep tonight. I hope I stay asleep. I'm going to take a second bench anti-nausea medicine before I go to bed. That should help me sleep as well as keeping the nausea at a pretty low level. No diarrhea since yesterday! Maybe that's a hopeful sign for this treatment cycle.
A sleepy day
And here's the long
Today, the day after treatment. Alan went to the pharmacy as soon as it opened and got my big guns anti-nausea medicine. By the time I was really up, it was here. As soon as I took it I went back to sleep. I've been asleep most of the day until about 6:00pm tonight. Every time I opened my eyes between naps, Sophie and Lola were napping in their "guard Mom" spot - Sophie on the floor near me and Lola curled up at my feet. I did wake to go to the bathroom and to get something to drink a couple of times. Alan was out most of the day, and at one point brought home a chai tea latte from Starbucks for me. I was able to drink a mug full of that. I've also had a couple of small glasses of diluted grape juice. I'm really trying hard to stay hydrated.
I don't think I'll have any trouble going to sleep tonight. I hope I stay asleep. I'm going to take a second bench anti-nausea medicine before I go to bed. That should help me sleep as well as keeping the nausea at a pretty low level. No diarrhea since yesterday! Maybe that's a hopeful sign for this treatment cycle.
Wednesday, October 21, 2009
How could I forget!
So here's the short of it,
My blood counts were OK, so I had my treatment today.
And here's the long
All my blood counts were in good shape today, so I got what I expect will be my final Chemo treatment. It's working pretty quickly. Within an hour of being home, my diarrhea had already started!
I FORGOT to order my Anti-nausea medicine for this treatment. So here I am without having it! I am supposed to take it first thing in the morning. I'm hoping Alan or Valdis will be able to go to the pharmacy first thing in the morning and wait for it. I have been so lucky not to have the put you on the floor nausea that so many people have.
The Abraxane hasn't gotten to my taste buds quite as quickly as the Taxotere did. Mom made dinner and a couple of hours after my treament, nothing tasted horrible, but by the end of the meal I was beginning to taste that metallic sharp taste and I have an aftertaste this evening that I can't quite get rid of. I've also started having chills and hot flashes. Not really bad right now, so perhaps this last treatment will be the easiest of all. After all, the dosage of Carboplatin has been reduced twice, and the Taxotere has been replaced with Abraxane!
My two brothers, Russ and Steve, will be here for a few days. Russ arrived this evening and Steve will be here sometime late tomorrow evening. I hope I feel well enough to have some good time with them.
I wanted to celebrate this final treatment today. My regular oncology nurse, Lori, was on vacation and Elizabeth took care of me. I kind of know all of them, because they all pitch in to change out the bags, answer the beeping of the infusion machine, or check on patients who are having some side effect, and once before when Lori was gone, I was in the capable hands of Elizabeth...anyway, when I told her that this was my last round of Carboplatin and Taxotere, she said, "You know, sometimes Dr. Schlabach has to have a patient do another treatment or two." I was astonished. She said that it's not uncommon - that about 10 to 15 percent of patients end up having additional treatments. I won't see Dr. Schlabach for 3 weeks, so we'll see then what he says. So that lightness of being that I was looking for is weighed down with the reality that there is that slim possibility that I may not be done after all.
I also had a chest x-ray after my treatment. After Elizabeth heard my cough and had me tell her I'd been on Septra, a z-pack, Leviquin, and now Septra again, she said, "How about I ask about getting you a chest x-ray." Hmmm. I should hear something tomorrow or the next day if anything shows up.
So perhaps the worst this will be is a few days of sleeping in and napping on the couch in front of replays on the Food Network.
My blood counts were OK, so I had my treatment today.
And here's the long
All my blood counts were in good shape today, so I got what I expect will be my final Chemo treatment. It's working pretty quickly. Within an hour of being home, my diarrhea had already started!
I FORGOT to order my Anti-nausea medicine for this treatment. So here I am without having it! I am supposed to take it first thing in the morning. I'm hoping Alan or Valdis will be able to go to the pharmacy first thing in the morning and wait for it. I have been so lucky not to have the put you on the floor nausea that so many people have.
The Abraxane hasn't gotten to my taste buds quite as quickly as the Taxotere did. Mom made dinner and a couple of hours after my treament, nothing tasted horrible, but by the end of the meal I was beginning to taste that metallic sharp taste and I have an aftertaste this evening that I can't quite get rid of. I've also started having chills and hot flashes. Not really bad right now, so perhaps this last treatment will be the easiest of all. After all, the dosage of Carboplatin has been reduced twice, and the Taxotere has been replaced with Abraxane!
My two brothers, Russ and Steve, will be here for a few days. Russ arrived this evening and Steve will be here sometime late tomorrow evening. I hope I feel well enough to have some good time with them.
I wanted to celebrate this final treatment today. My regular oncology nurse, Lori, was on vacation and Elizabeth took care of me. I kind of know all of them, because they all pitch in to change out the bags, answer the beeping of the infusion machine, or check on patients who are having some side effect, and once before when Lori was gone, I was in the capable hands of Elizabeth...anyway, when I told her that this was my last round of Carboplatin and Taxotere, she said, "You know, sometimes Dr. Schlabach has to have a patient do another treatment or two." I was astonished. She said that it's not uncommon - that about 10 to 15 percent of patients end up having additional treatments. I won't see Dr. Schlabach for 3 weeks, so we'll see then what he says. So that lightness of being that I was looking for is weighed down with the reality that there is that slim possibility that I may not be done after all.
I also had a chest x-ray after my treatment. After Elizabeth heard my cough and had me tell her I'd been on Septra, a z-pack, Leviquin, and now Septra again, she said, "How about I ask about getting you a chest x-ray." Hmmm. I should hear something tomorrow or the next day if anything shows up.
So perhaps the worst this will be is a few days of sleeping in and napping on the couch in front of replays on the Food Network.
Tuesday, October 20, 2009
So here's the short of it,
I am so grateful that Mom lives down the street.
And here's the long
I worked today. I was the only one back in the office and so I was able to get a lot of stuff done. I was right in the middle of something when I heard a noise and the substitute maintenance person came to check and see who was still in the building. I guess I'm so far behind that I just got carried away and totally lost track of time. I'm glad I felt OK today.
This evening I walked down to see Mom. She had called while I was at work to get some help with her mower and so I wanted to check on her. She didn't answer the door so I called her cell phone. She answered and told me she was working out in the storage shed. There she was in the middle of trying to sort through things and straighten. She says it's so much to do, she hardly knows where to start. But start she had! There was a pair of Dad's garden boots. She had tied the laces together and hung the boots up on a nail. It was a pretty poignant moment to see her there finding things Dad still had in shopping bags, sorting things, and beginning to organize it in her own way. I watched her pick up tools and tell me what they were used for and wrap the cords around them and put them together in a corner. And I couldn't help but look up at the wall where the clock has stopped. Alan was the one who saw it the other day. I don't know how long it's been stopped, but it's 12:35. I think somehow it should just stay that way.
I am so grateful that Mom lives down the street.
And here's the long
I worked today. I was the only one back in the office and so I was able to get a lot of stuff done. I was right in the middle of something when I heard a noise and the substitute maintenance person came to check and see who was still in the building. I guess I'm so far behind that I just got carried away and totally lost track of time. I'm glad I felt OK today.
This evening I walked down to see Mom. She had called while I was at work to get some help with her mower and so I wanted to check on her. She didn't answer the door so I called her cell phone. She answered and told me she was working out in the storage shed. There she was in the middle of trying to sort through things and straighten. She says it's so much to do, she hardly knows where to start. But start she had! There was a pair of Dad's garden boots. She had tied the laces together and hung the boots up on a nail. It was a pretty poignant moment to see her there finding things Dad still had in shopping bags, sorting things, and beginning to organize it in her own way. I watched her pick up tools and tell me what they were used for and wrap the cords around them and put them together in a corner. And I couldn't help but look up at the wall where the clock has stopped. Alan was the one who saw it the other day. I don't know how long it's been stopped, but it's 12:35. I think somehow it should just stay that way.
Monday, October 19, 2009
So here's the short of it,
Still coughing.
And here's the long
I was planning to work today, but when I got up and tried to get started, I was pretty nauseous. I was taken by surprise because I'm nearly four weeks out from my last treatment and really shouldn't be feeling any nausea. Anyway, I took some nausea medicine and by lunchtime I was pretty much over the nausea, but since it's fall break, I decided to spend the rest of the day napping. So I've really had quite a low and slow day. I do plan to go to work tomorrow!
I'm very frustrated that my treatment is making it so hard for me to do the things I want to do. I think I'm accustomed to pushing myself physically and being able to recover pretty quickly. I've been sick a couple of times in my life, that were harsh and lingering, but I've never experienced anything that has sapped both my energy and just my desire to try to overcome the feeling bad.
I'm having a hard time understanding this cough. I'm taking Septra; I dose up on Mucinex every 12 hours; and I've constantly got a cough drop in my mouth. Most of the day I only cough a little bit, but toward the end of the 12 hour cycle, I just start coughing and can hardly stop. It feels pretty awful. Liga said a little while ago, "Mom, you really should do something about that cough"! Right, I know sweetie; I know.
I'm sitting here looking at my bouquet of pink roses that Alan got for our anniversary. He said that he thought that pink roses were especially appropriate this year. They are really pretty. They are also way up high so that our Big Puppy, Sophie can't get to them. She's not quite 6 months old, and she already weighs about 45 pounds. She is such a sweet dog, but still has those wild puppy moments!
Here's hoping that tomorrow is a better day!
Still coughing.
And here's the long
I was planning to work today, but when I got up and tried to get started, I was pretty nauseous. I was taken by surprise because I'm nearly four weeks out from my last treatment and really shouldn't be feeling any nausea. Anyway, I took some nausea medicine and by lunchtime I was pretty much over the nausea, but since it's fall break, I decided to spend the rest of the day napping. So I've really had quite a low and slow day. I do plan to go to work tomorrow!
I'm very frustrated that my treatment is making it so hard for me to do the things I want to do. I think I'm accustomed to pushing myself physically and being able to recover pretty quickly. I've been sick a couple of times in my life, that were harsh and lingering, but I've never experienced anything that has sapped both my energy and just my desire to try to overcome the feeling bad.
I'm having a hard time understanding this cough. I'm taking Septra; I dose up on Mucinex every 12 hours; and I've constantly got a cough drop in my mouth. Most of the day I only cough a little bit, but toward the end of the 12 hour cycle, I just start coughing and can hardly stop. It feels pretty awful. Liga said a little while ago, "Mom, you really should do something about that cough"! Right, I know sweetie; I know.
I'm sitting here looking at my bouquet of pink roses that Alan got for our anniversary. He said that he thought that pink roses were especially appropriate this year. They are really pretty. They are also way up high so that our Big Puppy, Sophie can't get to them. She's not quite 6 months old, and she already weighs about 45 pounds. She is such a sweet dog, but still has those wild puppy moments!
Here's hoping that tomorrow is a better day!
Sunday, October 18, 2009
So here's the short of it,
Just pondering a few things.
And here's the long
Today Alan and I celebrate our 22nd anniversary. I can hardly believe it's been that long. We had a nice dinner out last night, and maybe we'll do something later on after my treatments are over and I'm feeling a little better. I've had a pretty good weekend, but I'm still struggling with this cough. Septra, Musinex, Robitussin, and cough drops are helping some. I'm still having times when I just feel like I can't quit coughing!
One of my friends who had breast cancer a few years ago, came back to work for Hamilton County last year. She's been struggling with illness ever since she came back into the schools were there are so many germs. So she has decided to retire. I'm really happy for her that she is in a place in her life where that's possible for her. It also makes me a bit worried about being able to go back to work - but then, there are so many women in our system who have been through this battle and are back at work and seem strong and able. I believe I will be counted in that number!
We are on fall break this week, but I'm going to work for a couple of days. It will give me a chance to maybe do some catch up! Then if all goes well, I should have my last treatment on Wednesday. Alan says he doesn't think I'll have my treatment. He is telling me I'll probably have to have another transfusion. I think he's just trying to keep my expectations in line.
My two brothers, Russ and Steve with his wife Pat, are coming in on Thursday to check in and take care of some of the business end of things. I'm disappointed to think that I might not feel well enough to spend time with them while they're here. But here I go again doing what one of my friends calls "future tripping" . I don't know if I'll have a treatment or not and I don't know how I'll feel, and I can just live the next two days and wait to see what Wednesday brings and deal with it then.
I was reading through some of the notepads that Dad left behind a little while ago. He wrote a piece on the 62nd anniversary of his father's death. I never got to know him; he died in a coal mining accident when Dad was just 15. Dad ended that piece by saying "I still miss him."
I am missing my Dad too.
Just pondering a few things.
And here's the long
Today Alan and I celebrate our 22nd anniversary. I can hardly believe it's been that long. We had a nice dinner out last night, and maybe we'll do something later on after my treatments are over and I'm feeling a little better. I've had a pretty good weekend, but I'm still struggling with this cough. Septra, Musinex, Robitussin, and cough drops are helping some. I'm still having times when I just feel like I can't quit coughing!
One of my friends who had breast cancer a few years ago, came back to work for Hamilton County last year. She's been struggling with illness ever since she came back into the schools were there are so many germs. So she has decided to retire. I'm really happy for her that she is in a place in her life where that's possible for her. It also makes me a bit worried about being able to go back to work - but then, there are so many women in our system who have been through this battle and are back at work and seem strong and able. I believe I will be counted in that number!
We are on fall break this week, but I'm going to work for a couple of days. It will give me a chance to maybe do some catch up! Then if all goes well, I should have my last treatment on Wednesday. Alan says he doesn't think I'll have my treatment. He is telling me I'll probably have to have another transfusion. I think he's just trying to keep my expectations in line.
My two brothers, Russ and Steve with his wife Pat, are coming in on Thursday to check in and take care of some of the business end of things. I'm disappointed to think that I might not feel well enough to spend time with them while they're here. But here I go again doing what one of my friends calls "future tripping" . I don't know if I'll have a treatment or not and I don't know how I'll feel, and I can just live the next two days and wait to see what Wednesday brings and deal with it then.
I was reading through some of the notepads that Dad left behind a little while ago. He wrote a piece on the 62nd anniversary of his father's death. I never got to know him; he died in a coal mining accident when Dad was just 15. Dad ended that piece by saying "I still miss him."
I am missing my Dad too.
Saturday, October 17, 2009
Pancakes, Loss, and Steak
So here's the short of it,
And here's the long
This morning I went down to Mom's and had blueberry pancakes. Aunt Joyce had spent the night and they were planning their day. I had such a good visit with them. Later in the day one of the Gideons, who had arranged to film the funeral service and the burial service brought Mom the DVD. She and Joyce watched it and I think it must have been very emotional for them.
Alan and I went to the visitation for the mother of a dear friend. Tomorrow is her funeral. It's so hard to lose a parent. I know that I'm doing better, I don't have the constant hollowness that I experienced in the first few days. But now the grief comes unexpectedly and something that may be very ordinary becomes an extraordinary reminder of Dad and brings tears and a deep heaviness. Many of my friends have told me that these memories eventually become a sweet reminder - I'm not there yet for sure. I ache for my friend's loss. This is not an easy journey.
Tonight Alan and I had an early anniversary dinner with Mom, Mommy Anne, Pennie, Myra, Liga and Valdis. It was a nice evening, and I ate steak! Every time I've been out I've been encouraged to eat red meat to help with my red blood cell production. Mom made steak the other night when we ate at her house. Dr. Schlabach said I'd have to eat a steak as big as Texas to make any difference, but if it makes everyone feel better, I can manage - and maybe it will help. I think when my treatments are all over and my blood counts are back up, I'll be so eager to have salads and vegetable plates!
Will eating steak help bring up my platelet count?
That is the question. And here's the long
This morning I went down to Mom's and had blueberry pancakes. Aunt Joyce had spent the night and they were planning their day. I had such a good visit with them. Later in the day one of the Gideons, who had arranged to film the funeral service and the burial service brought Mom the DVD. She and Joyce watched it and I think it must have been very emotional for them.
Alan and I went to the visitation for the mother of a dear friend. Tomorrow is her funeral. It's so hard to lose a parent. I know that I'm doing better, I don't have the constant hollowness that I experienced in the first few days. But now the grief comes unexpectedly and something that may be very ordinary becomes an extraordinary reminder of Dad and brings tears and a deep heaviness. Many of my friends have told me that these memories eventually become a sweet reminder - I'm not there yet for sure. I ache for my friend's loss. This is not an easy journey.
Tonight Alan and I had an early anniversary dinner with Mom, Mommy Anne, Pennie, Myra, Liga and Valdis. It was a nice evening, and I ate steak! Every time I've been out I've been encouraged to eat red meat to help with my red blood cell production. Mom made steak the other night when we ate at her house. Dr. Schlabach said I'd have to eat a steak as big as Texas to make any difference, but if it makes everyone feel better, I can manage - and maybe it will help. I think when my treatments are all over and my blood counts are back up, I'll be so eager to have salads and vegetable plates!
Friday, October 16, 2009
So here's the short of it,
At this point Chemo feels like cabin fever.
And here's the long
There are a few benefits to having my Chemo put off for a week. I am beginning to be able to taste more things. I even had a tomato for dinner last night and it tasted a little like a tomato. For the first time since I started the Chemo, my diarrhea has somewhat abated today. I was beginning to think that I'd have to live with that for the rest of my life! This lets me know that there probably will be a time when I won't have to battle that. I also have more energy - but I noticed today that it was really easy for me to push myself. I walked up and down one flight of steps at the office instead of taking the elevator and I was out of breath and felt like I'd run a big race! I'm really going to have to work hard on my stamina and strength after I finish up these treatments!
I've got a feeling that I would compare to the cabin fever that the old folks used to talk about - that feeling of just having to be out of the house and in the world with no artificial heat and no huge coats or layers after having been cooped up all winter long. I have that restless feeling. I want to walk up and down the steps without being out of breath. I want to get my sleep schedule back to some kind of normal. I want the bottoms of my feet to quit burning. I don't want to worry that a little nick will result in me bleeding so much I have to get blood! I want to NOT be so tired all the time. And I want to be out in the world with a normal immune system - I want to know that if someone sneezes or coughs I have those great soldiers in my body that will fight off whatever germs there are. I want to know that my body is doing what it should.
This weekend, Sunday, Alan and I will celebrate our 22nd wedding anniversary. Wow! He's been such a trooper through this illness and my Dad's illness and death. I'm really grateful to have him in my life.
At this point Chemo feels like cabin fever.
And here's the long
There are a few benefits to having my Chemo put off for a week. I am beginning to be able to taste more things. I even had a tomato for dinner last night and it tasted a little like a tomato. For the first time since I started the Chemo, my diarrhea has somewhat abated today. I was beginning to think that I'd have to live with that for the rest of my life! This lets me know that there probably will be a time when I won't have to battle that. I also have more energy - but I noticed today that it was really easy for me to push myself. I walked up and down one flight of steps at the office instead of taking the elevator and I was out of breath and felt like I'd run a big race! I'm really going to have to work hard on my stamina and strength after I finish up these treatments!
I've got a feeling that I would compare to the cabin fever that the old folks used to talk about - that feeling of just having to be out of the house and in the world with no artificial heat and no huge coats or layers after having been cooped up all winter long. I have that restless feeling. I want to walk up and down the steps without being out of breath. I want to get my sleep schedule back to some kind of normal. I want the bottoms of my feet to quit burning. I don't want to worry that a little nick will result in me bleeding so much I have to get blood! I want to NOT be so tired all the time. And I want to be out in the world with a normal immune system - I want to know that if someone sneezes or coughs I have those great soldiers in my body that will fight off whatever germs there are. I want to know that my body is doing what it should.
This weekend, Sunday, Alan and I will celebrate our 22nd wedding anniversary. Wow! He's been such a trooper through this illness and my Dad's illness and death. I'm really grateful to have him in my life.
Thursday, October 15, 2009
Feeling Better
So here's the short of it,
Feeling better is the upside of no Chemotherapy.
And here's the long
Well, the upside of not having a chemo treatment yesterday is that I really feel pretty good today. I was able to work, go to the cemetery with Mom, have dinner with Mom, take Sophie for a walk around the circle, and still have enough energy to go to an evening meeting. Of course I'm really tired now, but I've had a full day.
This afternoon Mom and I went to the cemetery; I'm so grateful that it's nearby. We can really be from our front doors to the gates of the cemetery in less than ten minutes. I think it will be a great comfort to Mom that she will be able to go whenever she wants to. I know that it is already a great comfort to me to know that I can just drive by and see the beautiful grounds. Those formative years when Dad lived on the edge of life and death honed his character and helped make him into the man he would become - the husband and father that he would become. That service he gave when he was barely old enough to be called a man occupied much of his thoughts in his later years. It may have only been when he returned to Belgium for the 60th anniversary of the Battle of the Bulge and was honored not only by the King, but also by ordinary people he met in the streets, that he was able to come to terms with the "awful things he had done." He knew that his final resting place would be a place where that service would be honored. He was comforted by knowing that.
I am looking forward to a few very good days. I have some of my taste coming back, so I may be able to enjoy a few meals, and I'm feeling well enough to work! So when I do get back, maybe I won't be quite as far behind.
I also think I learned an important lesson yesterday. I really do need to stay in the now. I don't need to get carried away by what I think is going to happen. I'll go to my appointment next week, and if I can get my last Chemo so it will be, but I'm not going to be so anticipatory this time.
Feeling better is the upside of no Chemotherapy.
And here's the long
Well, the upside of not having a chemo treatment yesterday is that I really feel pretty good today. I was able to work, go to the cemetery with Mom, have dinner with Mom, take Sophie for a walk around the circle, and still have enough energy to go to an evening meeting. Of course I'm really tired now, but I've had a full day.
This afternoon Mom and I went to the cemetery; I'm so grateful that it's nearby. We can really be from our front doors to the gates of the cemetery in less than ten minutes. I think it will be a great comfort to Mom that she will be able to go whenever she wants to. I know that it is already a great comfort to me to know that I can just drive by and see the beautiful grounds. Those formative years when Dad lived on the edge of life and death honed his character and helped make him into the man he would become - the husband and father that he would become. That service he gave when he was barely old enough to be called a man occupied much of his thoughts in his later years. It may have only been when he returned to Belgium for the 60th anniversary of the Battle of the Bulge and was honored not only by the King, but also by ordinary people he met in the streets, that he was able to come to terms with the "awful things he had done." He knew that his final resting place would be a place where that service would be honored. He was comforted by knowing that.
I am looking forward to a few very good days. I have some of my taste coming back, so I may be able to enjoy a few meals, and I'm feeling well enough to work! So when I do get back, maybe I won't be quite as far behind.
I also think I learned an important lesson yesterday. I really do need to stay in the now. I don't need to get carried away by what I think is going to happen. I'll go to my appointment next week, and if I can get my last Chemo so it will be, but I'm not going to be so anticipatory this time.
Wednesday, October 14, 2009
Disappointment!
So here's the short of it,
My platelet counts were too low for Chemo today. I'm so disappointed.
And here's the long
Well today when my labs came back my platelet count was at 35. which is below the level I need to be able to tolerate the big drugs. Dr. Schlabach said that my bone marrow is just saying "I just can't do any more." Even with the weekly Procrit shots my bone marrow is just not able to step up the production of platelets. Normal platelet counts are 150. - 450. If I get as low at 20. there is a possibility of spontaneous bleeding. Right now, I have instructions not to handle any sharp implements. Lori, my oncology nurse, told Alan that I couldn't vacuum or lift a skillet because you never knew if you might get a cut from these household implements!
My white counts are below normal as well, but they are just below normal levels 4.1 normal range 4.5 - 10.5. Hemoglobin is also down. 9.4 normal range 11.0 - 18.0 - of course this helps explain the fatigue. Another week will let everything get a little more normal. Here's a great link about low blood counts to explain all of these
So today I got another Procrit shot and my Herceptin. Next week we will try again. Even though Dr. Schlabach says I can't eat enough red meat toget my platelets up, Alan insisted that I eat some red meat, so we picked up Mom and went to Wendy's so I could get a chili. I was more eager to get a salad, because I can have raw foods this week. (I hope)
Pennie and Myra, Alan's sisters, will be here the end of this week. Having my treatment postponed for a week makes it possible that I'll be able to visit with them. Russ and Steve, my brothers, are coming up late the next week to do some more work on helping Mom close out Dad's accounts and help her with some transition kinds of things. And having my treatment next week means I probably won't be able to have much time with them to be involved in those things.
So all in all, my blood counts have put me two weeks behind the originally proposed schedule for chemotherapy. Of course, we knew going in that the proposed schedule could change. I've done remarkably well so far. I haven't had to be hospitalized, I haven't been in the pain that some people experience, and I have only one more Chemo treatment to go!
My platelet counts were too low for Chemo today. I'm so disappointed.
And here's the long
Well today when my labs came back my platelet count was at 35. which is below the level I need to be able to tolerate the big drugs. Dr. Schlabach said that my bone marrow is just saying "I just can't do any more." Even with the weekly Procrit shots my bone marrow is just not able to step up the production of platelets. Normal platelet counts are 150. - 450. If I get as low at 20. there is a possibility of spontaneous bleeding. Right now, I have instructions not to handle any sharp implements. Lori, my oncology nurse, told Alan that I couldn't vacuum or lift a skillet because you never knew if you might get a cut from these household implements!
My white counts are below normal as well, but they are just below normal levels 4.1 normal range 4.5 - 10.5. Hemoglobin is also down. 9.4 normal range 11.0 - 18.0 - of course this helps explain the fatigue. Another week will let everything get a little more normal. Here's a great link about low blood counts to explain all of these
So today I got another Procrit shot and my Herceptin. Next week we will try again. Even though Dr. Schlabach says I can't eat enough red meat toget my platelets up, Alan insisted that I eat some red meat, so we picked up Mom and went to Wendy's so I could get a chili. I was more eager to get a salad, because I can have raw foods this week. (I hope)
Pennie and Myra, Alan's sisters, will be here the end of this week. Having my treatment postponed for a week makes it possible that I'll be able to visit with them. Russ and Steve, my brothers, are coming up late the next week to do some more work on helping Mom close out Dad's accounts and help her with some transition kinds of things. And having my treatment next week means I probably won't be able to have much time with them to be involved in those things.
So all in all, my blood counts have put me two weeks behind the originally proposed schedule for chemotherapy. Of course, we knew going in that the proposed schedule could change. I've done remarkably well so far. I haven't had to be hospitalized, I haven't been in the pain that some people experience, and I have only one more Chemo treatment to go!
Tuesday, October 13, 2009
Anticipation
So here's the short of it,
Oh my, the cough, the joint aches, the anticipation for tomorrow!
And here's the long
My cough is just horrible! The Musinex keeps it under control. But I am only supposed to take it one time every 12 hours -- by the time I'm to 10 hours I'm coughing so much that it activates my gag reflex - even with cough drops and hot honey tea. And after I take it, there's another bit of time before it really kicks in. And this embarrasing detail, I'm coughing so hard and so much that I'm wetting myself. Yes, I know the fix and I'm doing that, but it's yucky. Tomorrow, first question, Can I please take the Musinex more often. That might be all I need.
This morning again it took me awhile to get my nausea and diarrhea under control. I also waited to make sure I didn't have temp. before I went in to work. I just had a few things that really couldn't wait until I get back to work after a treatment, and I got them all done! This is the third time that I was hit with a diarrhea urge while in the car on the way to work. I made it to the office and just ran in to the restroom down on the first floor, whew! Once, I just had to turn around and come back home and change all my clothes.
This evening Mom made dinner for me and Alan. Back in the early spring, when Dad was hospitalized for a urinary tract infection, Alan went shopping for a plant. I think he was looking for tomato plants, but what he found was broccoli. Anyway, this afternoon, Mom went out into the garden and found enough broccoli for our dinner! It was a bittersweet moment for sure.
I guess it's the Abraxane, but my left shoulder joint is so achy. My back hurts much worse than it has during the whole treatment, and my muscles ache like the beginning of the flu. Lori, my oncology nurse, told me that achy joints and muscles are the most common complaints for people using Abraxane - and told me to take ibuprofen. And that's just what I'm doing.
I am pretty eager for tomorrow to come and go. I don't like wishing my life away, but I want to go to the doctor and have everything be go and get that last treatment. Good news is there's no temperature today. Then, once I start back on the upswing, I think I'll really experience some kind of lightness of being!
I know I'm using the blog to detail all my aches and pains and weird things that happen to me, as well as my great grief at losing my Dad, but I do want to say, that all in all, I think I'm doing pretty well. I dare not say that nothing worse could happen, but somehow I've found the hand of God in all of this and I'm holding on tightly.
Oh my, the cough, the joint aches, the anticipation for tomorrow!
And here's the long
My cough is just horrible! The Musinex keeps it under control. But I am only supposed to take it one time every 12 hours -- by the time I'm to 10 hours I'm coughing so much that it activates my gag reflex - even with cough drops and hot honey tea. And after I take it, there's another bit of time before it really kicks in. And this embarrasing detail, I'm coughing so hard and so much that I'm wetting myself. Yes, I know the fix and I'm doing that, but it's yucky. Tomorrow, first question, Can I please take the Musinex more often. That might be all I need.
This morning again it took me awhile to get my nausea and diarrhea under control. I also waited to make sure I didn't have temp. before I went in to work. I just had a few things that really couldn't wait until I get back to work after a treatment, and I got them all done! This is the third time that I was hit with a diarrhea urge while in the car on the way to work. I made it to the office and just ran in to the restroom down on the first floor, whew! Once, I just had to turn around and come back home and change all my clothes.
This evening Mom made dinner for me and Alan. Back in the early spring, when Dad was hospitalized for a urinary tract infection, Alan went shopping for a plant. I think he was looking for tomato plants, but what he found was broccoli. Anyway, this afternoon, Mom went out into the garden and found enough broccoli for our dinner! It was a bittersweet moment for sure.
I guess it's the Abraxane, but my left shoulder joint is so achy. My back hurts much worse than it has during the whole treatment, and my muscles ache like the beginning of the flu. Lori, my oncology nurse, told me that achy joints and muscles are the most common complaints for people using Abraxane - and told me to take ibuprofen. And that's just what I'm doing.
I am pretty eager for tomorrow to come and go. I don't like wishing my life away, but I want to go to the doctor and have everything be go and get that last treatment. Good news is there's no temperature today. Then, once I start back on the upswing, I think I'll really experience some kind of lightness of being!
I know I'm using the blog to detail all my aches and pains and weird things that happen to me, as well as my great grief at losing my Dad, but I do want to say, that all in all, I think I'm doing pretty well. I dare not say that nothing worse could happen, but somehow I've found the hand of God in all of this and I'm holding on tightly.
Monday, October 12, 2009
So here's the short of it,
I am sick tonight!
And here's the long
Well, I slept in a bit this morning and woke with no fever. I was having more nausea than normal, but taking my time with crackers and some unsweetened tea and nausea medicine, I got it under control - so I decided to go to work. I hadn't been there long til I started feeling feverish. So I went down to the school nurse's office - I think it's fabulous that my office is in the same building as the head of school nursing! Anyway, they took my temp and it was just low grade - 99. Actually like lots of people (including my Dad) I run a little low usually. Anyway, I stayed on and got in a half day work.
This evening, Mom and I went over to have dinner with Mommy Anne. If I have my treatment on Wednesday, it will be at least 2 or 3 weeks before I'm able to see her, so I wanted to be sure that I got a chance to see her. We had a nice dinner and a lovely visit. I started feeling a bit feverish so right after dinner so Mom and I left. We asked Mommy Anne if she'd like us to walk upstairs with her, and she said "No, I'll just stay down here and visit for awhile!" I was so pleased.
Anyway when I got home I took my temp....nothing. But 20 minutes later, I'm thinking something is wrong, I have burning eyes, burning urine, chills - temperature check again and I have 100.5. I'm supposed to get in touch with my Doctor if it gets to 101.5. Hopefully that won't happen.
I'm eager to get to the office tomorrow even if it's for just a half an hour. I can't access all the bells and whistles of my e-mail on the Outlook Web Access (owa) for those of you who work with me! And I have a couple of things that I don't want to wait the week or two until I'm feeling better if I have my treatment on Wednesday! Stuff that impacts kids! So we'll see how it goes.
In the meantime, I'm going to take my PM meds in 30 minutes (have to watch the timing) and then go on to bed. Maybe a good night's sleep will do a small miracle.
I am sick tonight!
And here's the long
Well, I slept in a bit this morning and woke with no fever. I was having more nausea than normal, but taking my time with crackers and some unsweetened tea and nausea medicine, I got it under control - so I decided to go to work. I hadn't been there long til I started feeling feverish. So I went down to the school nurse's office - I think it's fabulous that my office is in the same building as the head of school nursing! Anyway, they took my temp and it was just low grade - 99. Actually like lots of people (including my Dad) I run a little low usually. Anyway, I stayed on and got in a half day work.
This evening, Mom and I went over to have dinner with Mommy Anne. If I have my treatment on Wednesday, it will be at least 2 or 3 weeks before I'm able to see her, so I wanted to be sure that I got a chance to see her. We had a nice dinner and a lovely visit. I started feeling a bit feverish so right after dinner so Mom and I left. We asked Mommy Anne if she'd like us to walk upstairs with her, and she said "No, I'll just stay down here and visit for awhile!" I was so pleased.
Anyway when I got home I took my temp....nothing. But 20 minutes later, I'm thinking something is wrong, I have burning eyes, burning urine, chills - temperature check again and I have 100.5. I'm supposed to get in touch with my Doctor if it gets to 101.5. Hopefully that won't happen.
I'm eager to get to the office tomorrow even if it's for just a half an hour. I can't access all the bells and whistles of my e-mail on the Outlook Web Access (owa) for those of you who work with me! And I have a couple of things that I don't want to wait the week or two until I'm feeling better if I have my treatment on Wednesday! Stuff that impacts kids! So we'll see how it goes.
In the meantime, I'm going to take my PM meds in 30 minutes (have to watch the timing) and then go on to bed. Maybe a good night's sleep will do a small miracle.
Sunday, October 11, 2009
So here's the short of it,
And here's the long
Today was a lovely day. I slept in later than I think I have for many many years. I was also up very late. My days and nights are so confused. I felt pretty good for the first part of the day (late morning and early afternoon was the first part of my day.).
At three this afternoon there was a wonderful birthday party for two year old Elijah at Mom's house. What a fun afternoon. Elizabeth made pumpkin cupcakes with cream cheese frosting. Elijah loved the frosting and managed to get a fingerful of icing from almost all the cupcakes! He also chased balloons, danced to music Elizabeth has on her iPod that is his playlist, and generally made all the grown ups smile.
By late afternoon, everyone had packed up and gone. Tonight is Mom's first night alone at the house since Dad died. Of course, she's been there alone, most of the time since his surgery, but this seems like some kind of marker. In my mind at least.
Anyway, this evening I took Sophie out to let her run with her girlfriends in the circle, and when I came in realized that I was chilling. I took my temperature and have a bit of fever. I also started having all this achy feeling. Weakness, fatigue, and achy joints and muscles are all common side effects of Abraxane, so I'm assuming that's what it is. I'll be sure to tell the doctor about it on Wednesday. So I had all these big plans to work tomorrow. I suppose I'll make that decision after I wake tomorrow and take my temperature and see how I feel. I've still got this awful cough as well. I'm using musinex and it's certainly helping, but I still have some cough even when I'm taking it right on time. If I get a little behind schedule, I just have this real hacking cough.
In the meantime, I really do want to feel better. It's been 16 weeks since I started the Chemo treatments and of course I have better days and worse days, but I haven't felt right since then. I think once I start the uphill from the last treatment, it will bring such a feeling of lightness! There's another very weird side effect that I'm eager to be rid of. You know, how you know your own smell. Your bed smells a certain way - your dirty clothes have a smell all you. I even buried my face in my Dad's bathrobe to inhale the scent that I recognized as his the other day. The smell of your own sweat is very recognizable - the smell of your urine and bowel movements are unique to you. Well, I don't even smell like myself - and I really don't like how I smell. I think I should get back my old smell -that will make me happy! So, I'm thinking just a few more weeks of smelling like a stranger is living in my skin. Can't wait.
Here at the end of the day, I'm not feeling so well.
And here's the long
Today was a lovely day. I slept in later than I think I have for many many years. I was also up very late. My days and nights are so confused. I felt pretty good for the first part of the day (late morning and early afternoon was the first part of my day.).
At three this afternoon there was a wonderful birthday party for two year old Elijah at Mom's house. What a fun afternoon. Elizabeth made pumpkin cupcakes with cream cheese frosting. Elijah loved the frosting and managed to get a fingerful of icing from almost all the cupcakes! He also chased balloons, danced to music Elizabeth has on her iPod that is his playlist, and generally made all the grown ups smile.
By late afternoon, everyone had packed up and gone. Tonight is Mom's first night alone at the house since Dad died. Of course, she's been there alone, most of the time since his surgery, but this seems like some kind of marker. In my mind at least.
Anyway, this evening I took Sophie out to let her run with her girlfriends in the circle, and when I came in realized that I was chilling. I took my temperature and have a bit of fever. I also started having all this achy feeling. Weakness, fatigue, and achy joints and muscles are all common side effects of Abraxane, so I'm assuming that's what it is. I'll be sure to tell the doctor about it on Wednesday. So I had all these big plans to work tomorrow. I suppose I'll make that decision after I wake tomorrow and take my temperature and see how I feel. I've still got this awful cough as well. I'm using musinex and it's certainly helping, but I still have some cough even when I'm taking it right on time. If I get a little behind schedule, I just have this real hacking cough.
In the meantime, I really do want to feel better. It's been 16 weeks since I started the Chemo treatments and of course I have better days and worse days, but I haven't felt right since then. I think once I start the uphill from the last treatment, it will bring such a feeling of lightness! There's another very weird side effect that I'm eager to be rid of. You know, how you know your own smell. Your bed smells a certain way - your dirty clothes have a smell all you. I even buried my face in my Dad's bathrobe to inhale the scent that I recognized as his the other day. The smell of your own sweat is very recognizable - the smell of your urine and bowel movements are unique to you. Well, I don't even smell like myself - and I really don't like how I smell. I think I should get back my old smell -that will make me happy! So, I'm thinking just a few more weeks of smelling like a stranger is living in my skin. Can't wait.
Saturday, October 10, 2009
So here's the short of it,
Details are so interesting.
And here's the long
Surely this cough I have is some kind of allergy! I had a dose of zithromax and within 3 days a round of Levaquin! Surely if it was a bug those would have knocked it out. I'm now taking Musinex. If I stay on my one every 12 hours schedule, the cough is pretty calm - but if I don't I really start hacking away. I'm eager to have this cough gone.
This evening, we decided to use one of the pieces written in the journal that Emily kept at the hospital. She asked Gene's caregivers and visitors if they would mind writing in it. Many did. Emily brought it home after Gene died, and it was at the house after the funeral. Several of the family took an opportunity to write in it during the days before and just after the funeral. Tonight we chose to use the piece written by Elizabeth's husband, Josh. As I typed the words he wrote, I was so tearful I could hardly see the words. It is a beautiful tribute.
Elizabeth and Alan took on the tremendous task of copying the legal pads that Dad used to write in. They are so interesting. He was a poet, a philosopher, a gardener, a planner, a letter writer, a pray-er, and probably lots of other things. These pads show all these sides of him. In one pad you might find, a letter to someone, a garden plan, a meditation on evil, a prayer list, his monthly activities, a Bible verse he had chosen for meditation. It's really pretty amazing. The two of them got it together and spent the equivalent of at least a day getting a copy for each child. It will be priceless.
I'm feeling pretty good today except for the darn cough. And of course pretty good is pretty relative. I'm awfully tired and achy. I understand that one of the side effects of Abraxane is achy joints and muscles. I didn't have that with the Taxotere - but all in all, I think I'm happy with the Abraxane for these last two treatments. I'm in a positive thinking mode that the Procrit shot from last week will get my blood counts up enough for me to have my last Chemo treatment on Wednesday. I looked up how Procrit works and I'm amazed. Our kidneys produce something called erythropoietin. It tells the bone marrow that it needs to produce red blood cells - Procrit is a synthetic version of erythropoietin. It should be in there telling my bone marrow, make more red cells, make more red cells! Who knew (except you doctors and other medical people) that your kidneys talked to your bone marrow and told them how many red blood cells they need to make!
In the meantime, I'm trying very hard to continue living in the now and not racing ahead to Wednesday.
Details are so interesting.
And here's the long
Surely this cough I have is some kind of allergy! I had a dose of zithromax and within 3 days a round of Levaquin! Surely if it was a bug those would have knocked it out. I'm now taking Musinex. If I stay on my one every 12 hours schedule, the cough is pretty calm - but if I don't I really start hacking away. I'm eager to have this cough gone.
This evening, we decided to use one of the pieces written in the journal that Emily kept at the hospital. She asked Gene's caregivers and visitors if they would mind writing in it. Many did. Emily brought it home after Gene died, and it was at the house after the funeral. Several of the family took an opportunity to write in it during the days before and just after the funeral. Tonight we chose to use the piece written by Elizabeth's husband, Josh. As I typed the words he wrote, I was so tearful I could hardly see the words. It is a beautiful tribute.
Elizabeth and Alan took on the tremendous task of copying the legal pads that Dad used to write in. They are so interesting. He was a poet, a philosopher, a gardener, a planner, a letter writer, a pray-er, and probably lots of other things. These pads show all these sides of him. In one pad you might find, a letter to someone, a garden plan, a meditation on evil, a prayer list, his monthly activities, a Bible verse he had chosen for meditation. It's really pretty amazing. The two of them got it together and spent the equivalent of at least a day getting a copy for each child. It will be priceless.
I'm feeling pretty good today except for the darn cough. And of course pretty good is pretty relative. I'm awfully tired and achy. I understand that one of the side effects of Abraxane is achy joints and muscles. I didn't have that with the Taxotere - but all in all, I think I'm happy with the Abraxane for these last two treatments. I'm in a positive thinking mode that the Procrit shot from last week will get my blood counts up enough for me to have my last Chemo treatment on Wednesday. I looked up how Procrit works and I'm amazed. Our kidneys produce something called erythropoietin. It tells the bone marrow that it needs to produce red blood cells - Procrit is a synthetic version of erythropoietin. It should be in there telling my bone marrow, make more red cells, make more red cells! Who knew (except you doctors and other medical people) that your kidneys talked to your bone marrow and told them how many red blood cells they need to make!
In the meantime, I'm trying very hard to continue living in the now and not racing ahead to Wednesday.
Friday, October 9, 2009
Staying in the Moment
So here's the short of it,
And here's the long
It' s really difficult for me to stay in the moment now. I'm feeling pretty good although I'm awfully tired. I worked today and felt like I am just a million miles behind. There are so many just routine things that I usually have done by this time of the year that I just haven't done. My supervisor/director, Margaret, came by the office today and her comment about it all was something like "well, just try to make a dent in it." And that's what I'm trying to do! She has been so supportive.
I had an appointment with my surgeon this morning, and she says the surgery looks great, and that I don't need to come back to her for four months. By that time, it will be time to start having mammograms every 6 months for awhile. While there, we started talking about my treatment schedule and radiation and how that will impact the breast. And I just started focusing on this coming Wednesday being my last Chemotherapy treatment. Of course, my blood counts have to come up. I so hope that the Procrit shot that I got this last Wednesday will work it's magic and those counts will be high enough! I am so eager for Wednesday to get here! I've been trying so hard all through this to just live one day at a time and not think about tomorrow or the next treatment, or whether or not I'll be really sick when I have the next one. I've been pretty good about it most of the time, but as the time for the last one grows nearer, I keep thinking about it. Which chair will be available. Will Lori ( my regular Oncology Nurse) be there. Will I feel like celebrating that afternoon. How sick will I be? Maybe I'll get away without being too wiped out. Will my red blood counts hold? These and many more questions are just swirling around at the edges of my consciousness. And whatever I'm trying to do one of them will pop through to interrupt my thought processes.
Last night I did pretty good sleeping on my other side - the side where I don't have the port, and I remember now why I started sleeping on my right side. My left shoulder gets really sore if I sleep on it! So maybe I could learn to sleep on my back. I think the problem with that is that if I'm on my back I snore as loud as a big train. I come by that honestly, both my parents could raise the roof - especially if they were snoring together!
At my doctor appointment today, she asked me if Dad had been sick for a long time. I was struck hard one more time by how tragic the whole thing was. He was so active and healthy. He drove himself to Kiwanis, to the Christian Businessmen's group, to Gideons, to the Master Gardener's group. The Wednesday before his surgery, he gave a presentation at his Church. He was active, busy, and extraordinarilly alert - and the surgical complication seems so unfair. But I will say this - even in his illness, he continued to be an example of how to live. I hope I can hold on to his last lessons.
I'm trying really hard to stay in the moment.
And here's the long
It' s really difficult for me to stay in the moment now. I'm feeling pretty good although I'm awfully tired. I worked today and felt like I am just a million miles behind. There are so many just routine things that I usually have done by this time of the year that I just haven't done. My supervisor/director, Margaret, came by the office today and her comment about it all was something like "well, just try to make a dent in it." And that's what I'm trying to do! She has been so supportive.
I had an appointment with my surgeon this morning, and she says the surgery looks great, and that I don't need to come back to her for four months. By that time, it will be time to start having mammograms every 6 months for awhile. While there, we started talking about my treatment schedule and radiation and how that will impact the breast. And I just started focusing on this coming Wednesday being my last Chemotherapy treatment. Of course, my blood counts have to come up. I so hope that the Procrit shot that I got this last Wednesday will work it's magic and those counts will be high enough! I am so eager for Wednesday to get here! I've been trying so hard all through this to just live one day at a time and not think about tomorrow or the next treatment, or whether or not I'll be really sick when I have the next one. I've been pretty good about it most of the time, but as the time for the last one grows nearer, I keep thinking about it. Which chair will be available. Will Lori ( my regular Oncology Nurse) be there. Will I feel like celebrating that afternoon. How sick will I be? Maybe I'll get away without being too wiped out. Will my red blood counts hold? These and many more questions are just swirling around at the edges of my consciousness. And whatever I'm trying to do one of them will pop through to interrupt my thought processes.
Last night I did pretty good sleeping on my other side - the side where I don't have the port, and I remember now why I started sleeping on my right side. My left shoulder gets really sore if I sleep on it! So maybe I could learn to sleep on my back. I think the problem with that is that if I'm on my back I snore as loud as a big train. I come by that honestly, both my parents could raise the roof - especially if they were snoring together!
At my doctor appointment today, she asked me if Dad had been sick for a long time. I was struck hard one more time by how tragic the whole thing was. He was so active and healthy. He drove himself to Kiwanis, to the Christian Businessmen's group, to Gideons, to the Master Gardener's group. The Wednesday before his surgery, he gave a presentation at his Church. He was active, busy, and extraordinarilly alert - and the surgical complication seems so unfair. But I will say this - even in his illness, he continued to be an example of how to live. I hope I can hold on to his last lessons.
Thursday, October 8, 2009
A Mixed Bag
So here's the short of it,
Just some random thoughts tonight
And here's the long
Today I stopped by the cemetery. There are several sections open for burials now; Dad is buried in section DD3. There is a small gravel access to a spot very near his grave. Since he was buried, seven days ago, there have been five more burials just in this section. We went to the cemetery together at least once a year for the Veteran's Day celebration, and sometimes for other occasions. I believe that Dad also went by himself from time to time. It's only about 10 minutes from where we live. He often said that he felt very good knowing that he would be buried there. I do too.
Yesterday I asked why my port area is so achey some of the time. My nurse pondered a couple of minutes and asked a couple of questions. "Do you sleep on that side?" she said. Well, of course that's the side I prefer to sleep on, and it turns out she thinks that's what's making it achey. I tried last night to sleep on the other side. That's hard! I'll have the port until sometime in June or July or maybe even longer, so I'm going to keep working on that.
This morning Carrie, our secretary, stopped by the office to offer her condolences. As she spoke about her own father's death, she began to tear up - and shared that it's been several years since her father died. We were both weeping and I found myself understanding how years later a person can still be so emotional about the loss of a parent.
I got quite a bit of stuff done today and feel pretty good about the day. I was so extra careful not to expose myself to anyone or anything that might be germy. I know that there's lots of flu in the school buildings, so I'm doing everything I can from the office. I really wonder how long it will be before I'm able to just kind of get back to normal. I understand that sometimes radiation can cause fatigue and low white counts. Apparently not for everyone though. So I'm hoping I'll luck out of that one..... there I go worrying about the future instead of just staying in the now - I'm really trying though.
From my office I can look out across 40th Street to the beautiful Forrest Hills Cemetery. It's very different from the very uniform look at the National Cemetery, but I still found it strangely compelling today.
Tonight Elizabeth was reflecting on Dad's life and she said that we were extremely lucky to have someone like him in our lives for so long. She's right. We were blessed beyond measure.
Just some random thoughts tonight
And here's the long
Today I stopped by the cemetery. There are several sections open for burials now; Dad is buried in section DD3. There is a small gravel access to a spot very near his grave. Since he was buried, seven days ago, there have been five more burials just in this section. We went to the cemetery together at least once a year for the Veteran's Day celebration, and sometimes for other occasions. I believe that Dad also went by himself from time to time. It's only about 10 minutes from where we live. He often said that he felt very good knowing that he would be buried there. I do too.
Yesterday I asked why my port area is so achey some of the time. My nurse pondered a couple of minutes and asked a couple of questions. "Do you sleep on that side?" she said. Well, of course that's the side I prefer to sleep on, and it turns out she thinks that's what's making it achey. I tried last night to sleep on the other side. That's hard! I'll have the port until sometime in June or July or maybe even longer, so I'm going to keep working on that.
This morning Carrie, our secretary, stopped by the office to offer her condolences. As she spoke about her own father's death, she began to tear up - and shared that it's been several years since her father died. We were both weeping and I found myself understanding how years later a person can still be so emotional about the loss of a parent.
I got quite a bit of stuff done today and feel pretty good about the day. I was so extra careful not to expose myself to anyone or anything that might be germy. I know that there's lots of flu in the school buildings, so I'm doing everything I can from the office. I really wonder how long it will be before I'm able to just kind of get back to normal. I understand that sometimes radiation can cause fatigue and low white counts. Apparently not for everyone though. So I'm hoping I'll luck out of that one..... there I go worrying about the future instead of just staying in the now - I'm really trying though.
From my office I can look out across 40th Street to the beautiful Forrest Hills Cemetery. It's very different from the very uniform look at the National Cemetery, but I still found it strangely compelling today.
Tonight Elizabeth was reflecting on Dad's life and she said that we were extremely lucky to have someone like him in our lives for so long. She's right. We were blessed beyond measure.
Wednesday, October 7, 2009
Low Blood Counts
So here's the short of it,
I had a Herceptin treatment today and my blood counts are pretty low.
And here's the long
Today was a Herceptin treatment day. That one is fairly routine and goes pretty quickly. We were in and out in about an hour. I'm glad it's getting that way considering I'll continue doing it once a week til sometime in June or July!
It's a good thing I only have one more chemo treatment, because my blood counts are struggling even with the transfusion. My white counts are below what's called the limits, so I have to stay really careful about not exposing myself to any nasty stuff - especially the flu. My Hemoglobin is up considerably from last week before the transfusion but still below the limits - so that called for another shot of Procrit, because if that count doesn't come up it will delay my chemo treatment next week. That's also the explanation for why I'm so tired all the time. My platelet count is way low. That's why any little nick on my skin just oozes blood way more than normal. I was cautioned not to use sharp implements and to be careful about bruising. This is also the explanation for why my gums have started bleeding in spite of all my efforts at good dental hygiene. So all in all for someone in my condition, I am in pretty good shape.
I asked about work, and got the go ahead if I cloister myself and make sure not to be around children or people who may be sick. I'll plan to work just in my office and try to stay clear of germy places. I'll be able to work until next Wednesday. That should keep me in touch enough not to completely lose my place until I'm well enough to go back full time!
Today as Alan drove me to my appointment, I thought about how in this week of my treatment cycle I waited for the all clear to go to Kindred to see Dad. I'd always ask him how he was doing and without fail, he'd say better. And he'd ask how I was doing. As I think about Dad and the lessons his life has taught me - I think how he lived life intentionally and never, ever gave up.
I had a Herceptin treatment today and my blood counts are pretty low.
And here's the long
Today was a Herceptin treatment day. That one is fairly routine and goes pretty quickly. We were in and out in about an hour. I'm glad it's getting that way considering I'll continue doing it once a week til sometime in June or July!
It's a good thing I only have one more chemo treatment, because my blood counts are struggling even with the transfusion. My white counts are below what's called the limits, so I have to stay really careful about not exposing myself to any nasty stuff - especially the flu. My Hemoglobin is up considerably from last week before the transfusion but still below the limits - so that called for another shot of Procrit, because if that count doesn't come up it will delay my chemo treatment next week. That's also the explanation for why I'm so tired all the time. My platelet count is way low. That's why any little nick on my skin just oozes blood way more than normal. I was cautioned not to use sharp implements and to be careful about bruising. This is also the explanation for why my gums have started bleeding in spite of all my efforts at good dental hygiene. So all in all for someone in my condition, I am in pretty good shape.
I asked about work, and got the go ahead if I cloister myself and make sure not to be around children or people who may be sick. I'll plan to work just in my office and try to stay clear of germy places. I'll be able to work until next Wednesday. That should keep me in touch enough not to completely lose my place until I'm well enough to go back full time!
Today as Alan drove me to my appointment, I thought about how in this week of my treatment cycle I waited for the all clear to go to Kindred to see Dad. I'd always ask him how he was doing and without fail, he'd say better. And he'd ask how I was doing. As I think about Dad and the lessons his life has taught me - I think how he lived life intentionally and never, ever gave up.
Tuesday, October 6, 2009
Still coughing
So here's the short of it,
I still have this yucky cough.
And here's the long
I'm still coughing and I have had two rounds of pretty big antibiotics. So, tomorrow when I go in for my Herceptin treatment I'll ask for advice. Right now I've been taking Robitussin DM, and it helps some. The cough is making my chest hurt in the area just to the left of my port. I'll ask them about that as well.
I keep thinking that I'm coming up on my very last Carboplatin and Abraxane treatment. If my blood counts hold, I should have that a week from tomorrow! I believe that the Abraxane has been a little easier to handle than the Taxotere was - but the cough has been a concern. I'm not sure it has anything to do with the medications, just probably my weakened immune system.
Elizabeth and Elijah are here visiting with Mom. They are working on a really cute fish quilt for Elijah - it's a stylized fish pattern and the colors Elizabeth chose are really nice. It looks something like the illustration on the right - . I can't wait to see how it turns out.
The childproofing that Russ and Alan worked on before E & E got here is working out great. He can't get out of the doors and the cabinets are childproofed. Elizabeth is helping Mom put things away that are enticing but not appropriate for Elijah. We are hoping that Valdis can get her VCR working so that Elijah can have some entertainment.
Another day is gone. I've had several people who have lost a parent say they think about that person every day even years after. I hope that will be true for me. I hope that not a day goes by for the rest of my life that I don't have at least one really happy memory of Dad.
I still have this yucky cough.
And here's the long
I'm still coughing and I have had two rounds of pretty big antibiotics. So, tomorrow when I go in for my Herceptin treatment I'll ask for advice. Right now I've been taking Robitussin DM, and it helps some. The cough is making my chest hurt in the area just to the left of my port. I'll ask them about that as well.
I keep thinking that I'm coming up on my very last Carboplatin and Abraxane treatment. If my blood counts hold, I should have that a week from tomorrow! I believe that the Abraxane has been a little easier to handle than the Taxotere was - but the cough has been a concern. I'm not sure it has anything to do with the medications, just probably my weakened immune system.
Elizabeth and Elijah are here visiting with Mom. They are working on a really cute fish quilt for Elijah - it's a stylized fish pattern and the colors Elizabeth chose are really nice. It looks something like the illustration on the right - . I can't wait to see how it turns out. The childproofing that Russ and Alan worked on before E & E got here is working out great. He can't get out of the doors and the cabinets are childproofed. Elizabeth is helping Mom put things away that are enticing but not appropriate for Elijah. We are hoping that Valdis can get her VCR working so that Elijah can have some entertainment.
Another day is gone. I've had several people who have lost a parent say they think about that person every day even years after. I hope that will be true for me. I hope that not a day goes by for the rest of my life that I don't have at least one really happy memory of Dad.
Monday, October 5, 2009
So here's the short of it,
I have some bug...
And here's the long
I finished a round of zithromax this past Tuesday. On Wednesday, I was still coughing and so I got started on a round of Levaquin. I am still coughing and am very tired. I really need to go to work, but my white counts are so low. I made a comment at dinner that I really needed to go in to work and Alan really fussed at me about not going out and jeopardizing myself on top of what I've apparently already got!
Today I mostly rested and did just a bit of work from home. I really didn't do anything at all around the house. Some of Mom's PEO sisters brought in dinner to her house, so Alan and I went there for dinner. Elizabeth and Elijah are here to visit her for a few days. I know she will enjoy having them.
There is a quietness about Mom's house now, and she is moving through the things that have to be done. She is an inspiration. She is not afraid of her sadness or her anger and frustration about the surgery gone so terribly wrong. She is moving through all of that and little thing by little thing, redefining her life in these very small ways.
I am so tired. I've got one more chemo treatment left! Week after next if my blood counts are good.
I am so thankful it's almost done.
I have some bug...
And here's the long
I finished a round of zithromax this past Tuesday. On Wednesday, I was still coughing and so I got started on a round of Levaquin. I am still coughing and am very tired. I really need to go to work, but my white counts are so low. I made a comment at dinner that I really needed to go in to work and Alan really fussed at me about not going out and jeopardizing myself on top of what I've apparently already got!
Today I mostly rested and did just a bit of work from home. I really didn't do anything at all around the house. Some of Mom's PEO sisters brought in dinner to her house, so Alan and I went there for dinner. Elizabeth and Elijah are here to visit her for a few days. I know she will enjoy having them.
There is a quietness about Mom's house now, and she is moving through the things that have to be done. She is an inspiration. She is not afraid of her sadness or her anger and frustration about the surgery gone so terribly wrong. She is moving through all of that and little thing by little thing, redefining her life in these very small ways.
I am so tired. I've got one more chemo treatment left! Week after next if my blood counts are good.
I am so thankful it's almost done.
Sunday, October 4, 2009
Tired and Coughing
So here's the short of it,
I'm tired and coughing.
And here's the long
I've been coughing for several days. I've kept it under control by taking Robitussin, but it's gotten worse today and tonight. I'm pretty sure this is not a new bug, but one that's been brewing since at least last weekend.
I had been planning on going to work, but tonight Alan reminded me of how low my white counts were last Wednesday and has convinced me that I should take another day at least before I go out. He thinks I'm just courting an infection if I continue to go out in public places. I will have to admit, my white counts were lower than they have been during the whole treatment. So I decided to take his advice and not go in for another day or two. I am pretty tired.
Russ is still here and he and Mom went to church this morning. I'm really glad that she's eager to get back into church activities. It's so hard for me to comprehend that Mom is a widow. She has talked on several occasions about how much support and nurturing she gets her church family. Elizabeth will be coming in tomorrow for about a week. Mom is so looking forward to having them for a few days. She'll be helping Mom do a few things, and mom will be delighting in her first great grandchild.
I didn't sleep well last night, so I'm going to try to get to bed early and get some good rest tonight.
I'm tired and coughing.
And here's the long
I've been coughing for several days. I've kept it under control by taking Robitussin, but it's gotten worse today and tonight. I'm pretty sure this is not a new bug, but one that's been brewing since at least last weekend.
I had been planning on going to work, but tonight Alan reminded me of how low my white counts were last Wednesday and has convinced me that I should take another day at least before I go out. He thinks I'm just courting an infection if I continue to go out in public places. I will have to admit, my white counts were lower than they have been during the whole treatment. So I decided to take his advice and not go in for another day or two. I am pretty tired.
Russ is still here and he and Mom went to church this morning. I'm really glad that she's eager to get back into church activities. It's so hard for me to comprehend that Mom is a widow. She has talked on several occasions about how much support and nurturing she gets her church family. Elizabeth will be coming in tomorrow for about a week. Mom is so looking forward to having them for a few days. She'll be helping Mom do a few things, and mom will be delighting in her first great grandchild.
I didn't sleep well last night, so I'm going to try to get to bed early and get some good rest tonight.
Saturday, October 3, 2009
So here's the short of it,
I had a very long nap today.
And here's the long
I suppose I just didn't realize how absolutely tired I really was. I spent a bit of time visiting with Greg and Russ this morning before they drove over to Nashville for Greg's flight. Early this afternoon I thought I'd just have a nice little nap. I slept all afternoon! I didn't even have to get up for the dreaded diarrhea.
I've wondered how that all works. Diarrhea has been such a constant companion during my post treatment weeks. I didn't even think about how I was going to make it through the visitation and the funeral, but I just didn't have any at all. The very next day (yesterday) it was right back again!
I'm glad I have another day tomorrow to just stretch out and rest and relax. I've gotten lots of comments that my color is lots better. That, I'm sure, is from the blood transfusion. I don't really notice so much difference, but that may be just because of my mental state the last week.
Mom seems to be doing well. She is enormously sad, but she is such a strong woman. She has talked about needing to find her new reality - she will do that. We'll all find our new reality. She has always had lots of friends and loves to participate in activities with the church and the women's groups she's belonged to. She will be a great example for us all about how to do this next stage of life.
Today, I am feeling so grateful that Mom pushed for the move to Chattanooga six years ago.
I had a very long nap today.
And here's the long
I suppose I just didn't realize how absolutely tired I really was. I spent a bit of time visiting with Greg and Russ this morning before they drove over to Nashville for Greg's flight. Early this afternoon I thought I'd just have a nice little nap. I slept all afternoon! I didn't even have to get up for the dreaded diarrhea.
I've wondered how that all works. Diarrhea has been such a constant companion during my post treatment weeks. I didn't even think about how I was going to make it through the visitation and the funeral, but I just didn't have any at all. The very next day (yesterday) it was right back again!
I'm glad I have another day tomorrow to just stretch out and rest and relax. I've gotten lots of comments that my color is lots better. That, I'm sure, is from the blood transfusion. I don't really notice so much difference, but that may be just because of my mental state the last week.
Mom seems to be doing well. She is enormously sad, but she is such a strong woman. She has talked about needing to find her new reality - she will do that. We'll all find our new reality. She has always had lots of friends and loves to participate in activities with the church and the women's groups she's belonged to. She will be a great example for us all about how to do this next stage of life.
Today, I am feeling so grateful that Mom pushed for the move to Chattanooga six years ago.
Friday, October 2, 2009
So here's the short of it,
So today was the first day of the ordinary days that will come in the weeks, months, and years ahead.
And here's the long
Today seems somehow like a reflection of a day, not really a day - almost like our puppy's first glimpse of herself in the mirror - it looks real, and maybe it is, but there's something strange about it - something not quite right. Dad's chair is right there in the same spot, and even though he hasn't sat in it for months, there was some far hope that he might sit there again. Today there's no question. At lunch Steve offered the prayer before the meal - something he's really good at, but today it punctuated that we won't hear one of Gene's before meal prayers again.
I know that it will be a year of firsts. The first time I will have a birthday without a card and flowers from my Mom and Dad. The first Thanksgiving, and on and on. I suppose that's a part of getting through it - I suppose that's how the first steps are, figuring out how to keep finding the joyful moments in life. I'll look to Dad's example for how to do that. One thing is for sure, he enjoyed his life. I inherit the legacy of a man who chose to see the good whenever he could, and who spent most of his life making the world a better place in one way or another. I know that I'll try every day for the rest of my life to live up to that legacy.
Today I am extraordinarily grateful that I am Gene Howard's daughter.
So today was the first day of the ordinary days that will come in the weeks, months, and years ahead.
And here's the long
Today seems somehow like a reflection of a day, not really a day - almost like our puppy's first glimpse of herself in the mirror - it looks real, and maybe it is, but there's something strange about it - something not quite right. Dad's chair is right there in the same spot, and even though he hasn't sat in it for months, there was some far hope that he might sit there again. Today there's no question. At lunch Steve offered the prayer before the meal - something he's really good at, but today it punctuated that we won't hear one of Gene's before meal prayers again.
I know that it will be a year of firsts. The first time I will have a birthday without a card and flowers from my Mom and Dad. The first Thanksgiving, and on and on. I suppose that's a part of getting through it - I suppose that's how the first steps are, figuring out how to keep finding the joyful moments in life. I'll look to Dad's example for how to do that. One thing is for sure, he enjoyed his life. I inherit the legacy of a man who chose to see the good whenever he could, and who spent most of his life making the world a better place in one way or another. I know that I'll try every day for the rest of my life to live up to that legacy.
Today I am extraordinarily grateful that I am Gene Howard's daughter.
Thursday, October 1, 2009
So here's the short of it,
Today we buried my Dad.
And here's the long
This is the most difficult passage I have faced so far in my life. I really know that I don't know how to live a life without my Dad. I also know that I will grow into the the ability to do that. I know that my relationship with my Mother will also change - and that is also uncharted territory. When I began this blog, I chose a poem that I thought would see me through my cancer treatments. I think I have to trust that in this passage too, I don't have to know the way; I can step out into the darkness with my hand in the hand of God and that will be safer than a known way.
Today we buried my Dad.
And here's the long
This is the most difficult passage I have faced so far in my life. I really know that I don't know how to live a life without my Dad. I also know that I will grow into the the ability to do that. I know that my relationship with my Mother will also change - and that is also uncharted territory. When I began this blog, I chose a poem that I thought would see me through my cancer treatments. I think I have to trust that in this passage too, I don't have to know the way; I can step out into the darkness with my hand in the hand of God and that will be safer than a known way.
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