Good day/Bad day?: ups & downs
We had a nice cookout with the Dittmars last night (thanks guys!) and on the way home my chest started feeling like it was on fire. Severe sunburn, pretty much. Had to sleep with a pillowcase under my shirt so no seams would rub on it. Then I woke up this AM achy and exhausted and couldn't shake the fatigue until late in the day after a long nap. Haven't had fatigue like that in a loooong time. Special thanks to Dawn, too, for helping out this afternoon so I could nap and Ben could accomplish things! But the evening has been better--Olive and I had ravioli, then dancing, a good bath and bedtime. BTW, my favorite Olive word these days is Cheerio (I have no idea to spell out how she pronounces it...)
Thanks for everyone who has expressed the same moral outrage about Olive's issue as we've been feeling. Just not cool. I can't help kicking myself for a while because she walked late (17 mos) and had a funny gait--I should have brought her in, but it seemed like she was outgrowing it and getting better at walking. Turns out she was just getting better at compensating for it.
So, in a nutshell, her R femur is out of the socket--the socket isn't well-formed and her leg has moved up above it. There are different interventions depending on age, and unfortunately she's likely past the orthoscopic surgery age range and into the open surgery range. Then, from everything I'm reading, it'll be 6 weeks to months of wearing a cast around her hips and one or both legs. That will make it a rough summer for her! We'll have to figure out all sorts of things to work around it (google "spica cast" if you're curious)--car seats, feeding, bathing, diapering, carrying her around (she's already 28# without a cast!)...Again, like I said, I'm jumping ahead of myself and it'll be a few weeks before our appt with the ortho surgeon to get the full scoop. But we're going to have a lot to figure out.
Julie & I were speculating tonight about what Olive's going to develop while she's immobile. We'll focus on getting her to read & write, maybe teach her piano and filmmaking, try to get her to start a blog...
April 30, 2011
April 29, 2011
Routine Check-up?
Good day/Bad day?: well, today's starting off fine! Yesterday...
I probably don't need to be sharing this here right now, but it's on my mind and I just need to put it out there. Yesterday Olive and I both had appts in the afternoon, me for radiation (the usual) and she for her late 18-mo appt (she's 20mos...). Routine check-up, she was very happy and silly and well, right? Then they found an ear infection that she's totally asymptomatic for. Then I mentioned off-hand that she's walked with one leg a little straighter. The MD saw it too and did an x-ray. Now she needs ortho surgery! Hip dysplasia, usually shows up earlier, but here we go. That's all we know right now until we sit down with the pediatric ortho surgeon, so I'll avoid conjecture at the moment (even though it's happening in my head...). Ugh.
So Ben & I are feeling a little victimized by the universe right now, a little pouty. No easy summers in Erdmania.
Day off for me, so I'll just enjoy the sunshine while it lasts
I probably don't need to be sharing this here right now, but it's on my mind and I just need to put it out there. Yesterday Olive and I both had appts in the afternoon, me for radiation (the usual) and she for her late 18-mo appt (she's 20mos...). Routine check-up, she was very happy and silly and well, right? Then they found an ear infection that she's totally asymptomatic for. Then I mentioned off-hand that she's walked with one leg a little straighter. The MD saw it too and did an x-ray. Now she needs ortho surgery! Hip dysplasia, usually shows up earlier, but here we go. That's all we know right now until we sit down with the pediatric ortho surgeon, so I'll avoid conjecture at the moment (even though it's happening in my head...). Ugh.
So Ben & I are feeling a little victimized by the universe right now, a little pouty. No easy summers in Erdmania.
Day off for me, so I'll just enjoy the sunshine while it lasts
April 27, 2011
Take care
Good day/Bad day?: okay
A busy week, and feeling low-grade/dull. So I'm going to take to heart the comments from the last post and try to do some more taking care of myself in the coming weeks. I have to admit, the messages that I hear over and over are that you feel better if you stay active, exercise, etc. But that's easy to say when there's time to do it. Makes no sense if I have to get less sleep in order to get the rest of my stuff done. Yes, I still have a hard time letting things go and accepting help. I especially have a hard time expecting Ben to pick up the slack during the week, but I am trying to and asking more of him.
So on that note, I need to go to bed and get my last busy day of the week over & done with tomorrow. Then I can catch up and think.
(Kathy--no Olive haircut, just a ponytail that stayed in for about 5 minutes...)
A busy week, and feeling low-grade/dull. So I'm going to take to heart the comments from the last post and try to do some more taking care of myself in the coming weeks. I have to admit, the messages that I hear over and over are that you feel better if you stay active, exercise, etc. But that's easy to say when there's time to do it. Makes no sense if I have to get less sleep in order to get the rest of my stuff done. Yes, I still have a hard time letting things go and accepting help. I especially have a hard time expecting Ben to pick up the slack during the week, but I am trying to and asking more of him.
So on that note, I need to go to bed and get my last busy day of the week over & done with tomorrow. Then I can catch up and think.
(Kathy--no Olive haircut, just a ponytail that stayed in for about 5 minutes...)
April 25, 2011
Pick-me-up
Good day/Bad day?: okay
It's hard getting through the days and having any useful thoughts. I'm amazed I was able to complete a handful of powerpoint slides today. But that's about it. It's becoming more profound fatigue, and fast. I get a little worried that there could be some depression sneaking into the mix, but then I don't fit the screening tools. I went to Zumba tonight to try and give me a little energy lift. It worked for the last couple of hours! But I can really only sneak it in once a week, and other exercise is hard to get in, too. Lots of logistics to deal with.
Here's me with hair returning! Note the eyebrows--now Ben can tell that I'm mad again...
Right now it's soft and fuzzy like a baby chick.
And here's Miss Olive being super cool:
We had a fun dance party on the way home from daycare today, with a mix of Bjork, the Beastie Boys, and Cab Calloway. She has a doll that she makes dance. She is also a big fan of putting dolls/stuffed animals to sleep (tucking them under a blanket) and then yelling her version of "Wake up!"
It's hard getting through the days and having any useful thoughts. I'm amazed I was able to complete a handful of powerpoint slides today. But that's about it. It's becoming more profound fatigue, and fast. I get a little worried that there could be some depression sneaking into the mix, but then I don't fit the screening tools. I went to Zumba tonight to try and give me a little energy lift. It worked for the last couple of hours! But I can really only sneak it in once a week, and other exercise is hard to get in, too. Lots of logistics to deal with.
Here's me with hair returning! Note the eyebrows--now Ben can tell that I'm mad again...
Right now it's soft and fuzzy like a baby chick.
And here's Miss Olive being super cool:
We had a fun dance party on the way home from daycare today, with a mix of Bjork, the Beastie Boys, and Cab Calloway. She has a doll that she makes dance. She is also a big fan of putting dolls/stuffed animals to sleep (tucking them under a blanket) and then yelling her version of "Wake up!"
April 24, 2011
Happy Easter
Good day/Bad day?: not sure
It was a nice Easter with the in-laws, but dang, was I tired. It was an okay weekend, but I was off-schedule with the whole thing and didn't really much time to recuperate. I'd been hitting the wall in the evening for a while, but today I was finished before I even started. I hate it, because I lose the brain power to creatively deal with Olive (we're constantly playing outsmart the toddler here, and it's not easy!) and just start shutting down. Not excited about 3+ more weeks of this.
But Olive rocked the egg hunt! And everyone else picked up my slack...
It was a nice Easter with the in-laws, but dang, was I tired. It was an okay weekend, but I was off-schedule with the whole thing and didn't really much time to recuperate. I'd been hitting the wall in the evening for a while, but today I was finished before I even started. I hate it, because I lose the brain power to creatively deal with Olive (we're constantly playing outsmart the toddler here, and it's not easy!) and just start shutting down. Not excited about 3+ more weeks of this.
But Olive rocked the egg hunt! And everyone else picked up my slack...
April 21, 2011
Home Safe
Good day/Bad day?: okay
The morning started with a multi-tantrum bang, but then the day improved for all. Ben got home in one piece tonight, and thanks to Gene & Kate's meal delivery I got to hear Olive attempt to say enchilada--"each-ah-la" is about the best I can describe it. Very tired. Very, very tired. But day off tomorrow...
The morning started with a multi-tantrum bang, but then the day improved for all. Ben got home in one piece tonight, and thanks to Gene & Kate's meal delivery I got to hear Olive attempt to say enchilada--"each-ah-la" is about the best I can describe it. Very tired. Very, very tired. But day off tomorrow...
April 20, 2011
Visualize
Good day/Bad day?: fine but tiring
...that I'm laying on a tropical beach on a sunny day with my arms stretched up. The sand is white and pristine, the water turquoise blue, a gentle breeze is blowing, palm trees swaying, there's a fruity drink by my side. Maybe I'm in a hammock, maybe not, but there's at least one around.
This is one thing I try to visualize during radiation. I figure if it's radiation, it's much happier to imagine it's radiation from the sun that feels good. Sometimes I imagine that I also have grapes on my chest (the cancer cells) that shrivel under the sun to raisins. Then sometimes I just think of the word apoptosis...I find it pleasant. For some reason it's a lot easier for me to visualize with radiation than it was with chemo--then all I could picture was rivers of red poison (the one drug was dyed red). Not very healing!
Cut Olive's mop down tonight, at least her bangs. I need a professional for the rest! She was repeating almost everything I said in the car today, some of it very well. She wants to say mango at dinner, too, which comes out "nee-moo".
Night night.
...that I'm laying on a tropical beach on a sunny day with my arms stretched up. The sand is white and pristine, the water turquoise blue, a gentle breeze is blowing, palm trees swaying, there's a fruity drink by my side. Maybe I'm in a hammock, maybe not, but there's at least one around.
This is one thing I try to visualize during radiation. I figure if it's radiation, it's much happier to imagine it's radiation from the sun that feels good. Sometimes I imagine that I also have grapes on my chest (the cancer cells) that shrivel under the sun to raisins. Then sometimes I just think of the word apoptosis...I find it pleasant. For some reason it's a lot easier for me to visualize with radiation than it was with chemo--then all I could picture was rivers of red poison (the one drug was dyed red). Not very healing!
Cut Olive's mop down tonight, at least her bangs. I need a professional for the rest! She was repeating almost everything I said in the car today, some of it very well. She wants to say mango at dinner, too, which comes out "nee-moo".
Night night.
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