Keeping this brief cuz I don't feel so hot.
Last Thursday my wonderful sister, Kathy, drove up from Milwaukee with her two boys and picked up Dominic and me and drove us all to my wonderful sister Sue's house in DeForest. I was a terrible traveling companion and a lousy guest. But the kids all had fun and I had a new view as a lump on Sue's couch instead of on my own. Dominic and I stayed overnight cuz the drive back would have been too much for one day. But when I woke up Friday morning I was wishing I was home cuz I felt so rough. Again I was a terrible traveling companion, and once we reached my house I fell asleep in the chair for two hours---with my coat still on.
Today I was out of the house again to see an oral surgeon about these mouth problems. A potential problem is osteonecrosis as a result of various meds; most specifically the Zometa I've been taking for two years now. The upside is that there is not a big gaping hole in my jaw bone. I have some mouth rinse to try for a week to hopefully get these blood clots under control. Then we (Brian and I) went to the clinic to get my blood drawn cuz I've been so light headed and woozy and weak and out of it. Sure enough, I'm very anemic again. So from the clinic we went to the hospital to get my blood typed and crossed for a blood transfusion tomorrow (Happy Halloween). I'll be there at 10am and it will take 6 to 8 hours for the transfusion. If you're in the neighborhood stop by! I guess that's another change of scenery for me tomorrow...the view from my hospital room.
Definitely time to go get horizontal on my couch again...and try not to sleep through my Vikings game.
Monday, October 30, 2006
Saturday, October 21, 2006
Happy Sweetest Day!
Since I can't send a Hallmark card to each one of you, I thought I would blog my good wishes to you instead. I think it's very sweet that all of you check in here from time to time to see how I am. And on a gloomy Saturday in October, it's especially nice to remember all the many sweet people who touch our lives.
Yesterday I had labs, saw Dr Kumar, and had a treatment. The labs came back showing my red blood cells have taken another dip. I may end up going in for a blood transfusion early in the week. We did not check the tumor marker number, but will do so in two weeks. That's the number we WANT to see drop! White blood cells look fine which is always good.
When I saw Dr Kumar we talked about a number of different things I've been experiencing, the strangest of which are the blood clots in my mouth. Three times I have had it happen where I taste blood and then discover a clot. Yes, it's as gross as it sounds. They are about the size of half a peanut. It is most likely caused by one of the meds and I am now taking one Bayer tablet each morning to prevent clotting. Brian said he is going to have to build me a bigger shelf for all of my medicine bottles. We also talked about this pain in my right thigh/femur. For now we're going to monitor it and see if it becomes more of a constant thing, but it could be a side effect of some of the radiation I had to my back. If it gets worse or is problematic on a daily basis then we may do an x-ray or scan. I sometimes walk with a limp because of it though.
The treatment itself went well enough. The nurses were friendly and wonderful as always. No surprises or changes, except I got the Zometa this week also. I haven't had that for six weeks now, whereas it used to be every four weeks. Chemo pills start up again tomorrow (she says dreadfully).
Last night we had a visitation at the funeral home in Oostburg. Afterwards Brian and I came home and had a conversation about our own funerals/burials. It was not a conversation either one of us has wanted to have, but the evening just lended itself to finally sitting down and discussing some things. It certainly isn't anything anyone wants to talk about or think about, but it was important. And it seemed to lift another weight from my shoulders. Next step is to actually follow through with making some of the plans. Like I keep saying...you take care of all of these uncomfortable things, and then you just file them away for safe keeping until they're needed---no matter how far down the road that may be.
Hug all your sweeties today that you can!
Yesterday I had labs, saw Dr Kumar, and had a treatment. The labs came back showing my red blood cells have taken another dip. I may end up going in for a blood transfusion early in the week. We did not check the tumor marker number, but will do so in two weeks. That's the number we WANT to see drop! White blood cells look fine which is always good.
When I saw Dr Kumar we talked about a number of different things I've been experiencing, the strangest of which are the blood clots in my mouth. Three times I have had it happen where I taste blood and then discover a clot. Yes, it's as gross as it sounds. They are about the size of half a peanut. It is most likely caused by one of the meds and I am now taking one Bayer tablet each morning to prevent clotting. Brian said he is going to have to build me a bigger shelf for all of my medicine bottles. We also talked about this pain in my right thigh/femur. For now we're going to monitor it and see if it becomes more of a constant thing, but it could be a side effect of some of the radiation I had to my back. If it gets worse or is problematic on a daily basis then we may do an x-ray or scan. I sometimes walk with a limp because of it though.
The treatment itself went well enough. The nurses were friendly and wonderful as always. No surprises or changes, except I got the Zometa this week also. I haven't had that for six weeks now, whereas it used to be every four weeks. Chemo pills start up again tomorrow (she says dreadfully).
Last night we had a visitation at the funeral home in Oostburg. Afterwards Brian and I came home and had a conversation about our own funerals/burials. It was not a conversation either one of us has wanted to have, but the evening just lended itself to finally sitting down and discussing some things. It certainly isn't anything anyone wants to talk about or think about, but it was important. And it seemed to lift another weight from my shoulders. Next step is to actually follow through with making some of the plans. Like I keep saying...you take care of all of these uncomfortable things, and then you just file them away for safe keeping until they're needed---no matter how far down the road that may be.
Hug all your sweeties today that you can!
Thursday, October 19, 2006
Hats off to my Friends!
Or, more appropriately, sombreros off!!
What's better than a friend callling to see if it's ok if she stops over? How about that friend showing up with 3 other friends with her?
And what's better than that? How about if they show up wearing sombreros and ponchos, bearing food and beverages (including a Snapple for me!) and a boom box with a CD of Mexican music? And there were flowers and a card with a picture of the 5 of us from Cinco de Mayo, 2005. (And Brian never once let the cat out of the bag.)
Most special of all, there were lots and lots of laughs! I can't thank these dear women enough. When they left I cried because they made me feel so loved. So THANK YOU to KB, Lisa, Sheryl, and Veronica!! Don't think I ever take my good fortune in friends for granted. You guys are the best!
The timing of this little fiesta couldn't have been better, either. Monday was one of the very worst days I have had so far through this entire experience. I felt completely awful the entire day and it left me weak and emotional and tired of this ordeal. I felt a little better on Tuesday and by Wednesday was up to seeing some visitors. It renewed my psychological strength!
Today I feel relatively decent. I managed to finally get a couple of loads of laundry done. (This has become a major feat for me.) And I finally went through the piles of mail that have been building up on my kitchen counter. Of course, all of this is done in small chunks of time, with resting in between each step. But I'm proud of these small accomplishments.
Tomorrow is treatment day again and we'll start all over in the process. I just keep telling myself that the treatments are making me feel yucky because they're working. That's my story, and I'm sticking to it.
So once again I send out a heartfelt THANK YOU to all of you who read this blog, say your prayers, and extend your warmth into my world. I know an awful lot of pretty darn wonderful people and I feel truly blessed to have each and every one of you in my life!
What's better than a friend callling to see if it's ok if she stops over? How about that friend showing up with 3 other friends with her?
And what's better than that? How about if they show up wearing sombreros and ponchos, bearing food and beverages (including a Snapple for me!) and a boom box with a CD of Mexican music? And there were flowers and a card with a picture of the 5 of us from Cinco de Mayo, 2005. (And Brian never once let the cat out of the bag.)
Most special of all, there were lots and lots of laughs! I can't thank these dear women enough. When they left I cried because they made me feel so loved. So THANK YOU to KB, Lisa, Sheryl, and Veronica!! Don't think I ever take my good fortune in friends for granted. You guys are the best!
The timing of this little fiesta couldn't have been better, either. Monday was one of the very worst days I have had so far through this entire experience. I felt completely awful the entire day and it left me weak and emotional and tired of this ordeal. I felt a little better on Tuesday and by Wednesday was up to seeing some visitors. It renewed my psychological strength!
Today I feel relatively decent. I managed to finally get a couple of loads of laundry done. (This has become a major feat for me.) And I finally went through the piles of mail that have been building up on my kitchen counter. Of course, all of this is done in small chunks of time, with resting in between each step. But I'm proud of these small accomplishments.
Tomorrow is treatment day again and we'll start all over in the process. I just keep telling myself that the treatments are making me feel yucky because they're working. That's my story, and I'm sticking to it.
So once again I send out a heartfelt THANK YOU to all of you who read this blog, say your prayers, and extend your warmth into my world. I know an awful lot of pretty darn wonderful people and I feel truly blessed to have each and every one of you in my life!
Saturday, October 14, 2006
Color me Tired
With no warning or foresight, I had another rough night last night. I woke up around 1:30 and did some tossing and turning to try and get comfortable. At 1:50 I finally just got out of bed so I wouldn't wake Brian. My right knee, femur and hip joint all hurt so badly again. I tried walking, sitting, laying down, standing up, propping this way, dangling that way...I even tried the new soft and fuzzy heating pad from my sister thinking the heat would ease some of the discomfort. Nothing worked. It was one of those pains where I couldn't even cry because it hurt too much (ever had that?---ties back to my labor analogy from last time this happened).
Then, to make matters worse, I got violently sick at about 4:00. Why? Why should I be getting sick 10 hours after I last ate? To say the least, it was a long, miserable night. At 7-ish I finally felt the pain easing in the leg and crawled back in bed. I slept off and on for about 4 hours.
What a terrible hostess I am! My brother, Jerry, is here and I haven't even seen him yet today. Pathetic. Of course, he's outside playing in the woods with Dominic, Lorenzo and Zachary, so I think he's being fairly well entertained.
Today is day 7 of the chemo pills. While it may seem unrealistic any more at this point, I still have high, high hopes for a day of "normalcy" during this upcoming week when I'm off the pills. Keep your fingers crossed for me!
Have a warm weekend. Don't blow away. And enjoy the perfect blue sky!
Then, to make matters worse, I got violently sick at about 4:00. Why? Why should I be getting sick 10 hours after I last ate? To say the least, it was a long, miserable night. At 7-ish I finally felt the pain easing in the leg and crawled back in bed. I slept off and on for about 4 hours.
What a terrible hostess I am! My brother, Jerry, is here and I haven't even seen him yet today. Pathetic. Of course, he's outside playing in the woods with Dominic, Lorenzo and Zachary, so I think he's being fairly well entertained.
Today is day 7 of the chemo pills. While it may seem unrealistic any more at this point, I still have high, high hopes for a day of "normalcy" during this upcoming week when I'm off the pills. Keep your fingers crossed for me!
Have a warm weekend. Don't blow away. And enjoy the perfect blue sky!
Monday, October 09, 2006
What's on my plate?
Good morning one and all,
I had an appt with Dr K last Friday, as well as another treatment. The lab work shows that my anemia has worsened slightly so we up-ed the dosage of Aranesp. I also continue to be dehydrated so they gave me more fluids than usual. I'll never understand dehydration! It isn't like I don't consume fluids throughout the day, so how does a person really get to be dehydrated? (I know the lack of eating and some of the drugs make a difference, but it's still very strange to me.) These two factors alone (anemia and dehydration) certainly can account for the extreme light-headedness I've been experiencing.
Even now my head is swirling somewhere above my shoulders in a disconnected kind of way. Add to that the fact that my stomach is flopping around like a fish out of water and it's just another day in the life of Carol.
We are going to wait four more weeks and then check my tumor marker number again at that time. If the numbers have not come down then we will switch to the Taxol (drip chemo) at that time. I can't put my finger on what he said or how he said it, but there was just something different about Dr K this time that did not feel very optimistic about my prognosis. Normally I leave there feeling more positive than I felt going in, but not on Friday.
I am happy to report that Dominic did a really good job driving the other evening. Likes to hug the right shoulder pretty close, but we'll work on that. He and his buddy also had an AWESOME time at the concert at Alpine Valley Saturday night. I'm very pleased we were able to work all of that out for them.
Brian was a little sore in the shoulders this morning as he golfed on Friday, Saturday, and Sunday this past weekend. Have to take advantage of these last good Fall days I suppose. I'm so happy he gets out and has fun with his buddies. It's really good for him!
All kinds of upheaval at work right now. I have some of the details but not all. Kind of nervous about what all of this could mean in the long run. I'll check in with some folks there when my brain feels a little less clouded so I can absorb all that's going on. For now, I'm trying not to worry about it too much.
Time to go put my head on my pillow. Funny how that seems to have a direct effect on my stomach as well.
I had an appt with Dr K last Friday, as well as another treatment. The lab work shows that my anemia has worsened slightly so we up-ed the dosage of Aranesp. I also continue to be dehydrated so they gave me more fluids than usual. I'll never understand dehydration! It isn't like I don't consume fluids throughout the day, so how does a person really get to be dehydrated? (I know the lack of eating and some of the drugs make a difference, but it's still very strange to me.) These two factors alone (anemia and dehydration) certainly can account for the extreme light-headedness I've been experiencing.
Even now my head is swirling somewhere above my shoulders in a disconnected kind of way. Add to that the fact that my stomach is flopping around like a fish out of water and it's just another day in the life of Carol.
We are going to wait four more weeks and then check my tumor marker number again at that time. If the numbers have not come down then we will switch to the Taxol (drip chemo) at that time. I can't put my finger on what he said or how he said it, but there was just something different about Dr K this time that did not feel very optimistic about my prognosis. Normally I leave there feeling more positive than I felt going in, but not on Friday.
I am happy to report that Dominic did a really good job driving the other evening. Likes to hug the right shoulder pretty close, but we'll work on that. He and his buddy also had an AWESOME time at the concert at Alpine Valley Saturday night. I'm very pleased we were able to work all of that out for them.
Brian was a little sore in the shoulders this morning as he golfed on Friday, Saturday, and Sunday this past weekend. Have to take advantage of these last good Fall days I suppose. I'm so happy he gets out and has fun with his buddies. It's really good for him!
All kinds of upheaval at work right now. I have some of the details but not all. Kind of nervous about what all of this could mean in the long run. I'll check in with some folks there when my brain feels a little less clouded so I can absorb all that's going on. For now, I'm trying not to worry about it too much.
Time to go put my head on my pillow. Funny how that seems to have a direct effect on my stomach as well.
Wednesday, October 04, 2006
It's me
My apologies to those of you who have been checking in and finding no new updates. I guess it's because I have nothing new to say. Same ol', same ol'. How many times do you really want to read that I'm tired and nauseous and weak and have no energy or zip, and tingling in my fingers. I do appreciate the fact that so very many of you are so loyal in reading this blog. I'll try to do better.
My current state finds me home every day, which can be depressing at times. Especially when this is my "off" week (from the chemo) and I feel like I should be more human, but that just doesn't seem to happen any more. The chemo pills are cumulative both during the week that I'm taking them, but also in how they accumulate in my system over time, so their effects are still present on these weeks when I'm not taking them. I don't like it. I was so looking forward to a couple of good days when I didn't feel I needed to be close to my couch and bucket and bed.
I can't remember the last day that the mail came and there wasn't some sort of card from someone in there. Funny ones, prayerful ones, funny ones, thinking of you ones, funny ones. It definitely makes mail time a treat.
The phone calls are always appreciated too. I'm very, very bad at picking up the phone and calling others. I apologize for that. It isn't that I don't want to talk to anyone. It's that I feel as though everyone else has a life going on around them and I would hate to call and interupt that --- or be a downer on someone's good day. I'll try to do better with that too!
Dominic has his drum lesson about 4 or 5 blocks from work, so he's going to drive tonight (yikes!) and I'm going to spend about a 1/2 hour at my desk while he drums. Then he can drive us back home again. I'm actually not all that nervous. We'll take back roads, not the interstate. I'll let you know how it goes...
My current state finds me home every day, which can be depressing at times. Especially when this is my "off" week (from the chemo) and I feel like I should be more human, but that just doesn't seem to happen any more. The chemo pills are cumulative both during the week that I'm taking them, but also in how they accumulate in my system over time, so their effects are still present on these weeks when I'm not taking them. I don't like it. I was so looking forward to a couple of good days when I didn't feel I needed to be close to my couch and bucket and bed.
I can't remember the last day that the mail came and there wasn't some sort of card from someone in there. Funny ones, prayerful ones, funny ones, thinking of you ones, funny ones. It definitely makes mail time a treat.
The phone calls are always appreciated too. I'm very, very bad at picking up the phone and calling others. I apologize for that. It isn't that I don't want to talk to anyone. It's that I feel as though everyone else has a life going on around them and I would hate to call and interupt that --- or be a downer on someone's good day. I'll try to do better with that too!
Dominic has his drum lesson about 4 or 5 blocks from work, so he's going to drive tonight (yikes!) and I'm going to spend about a 1/2 hour at my desk while he drums. Then he can drive us back home again. I'm actually not all that nervous. We'll take back roads, not the interstate. I'll let you know how it goes...
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