This year I’m thankful for…
Food. Glorious food. Especially bacon. Especially bacon wrapped around pork. I mean, how can you go wrong? Pig and pig? It’s just meant to be. But seriously, folks, I’m thankful for scrumptious food. And for the fact that my sister and I are actually pretty great cooks. Her pork was amazing, my piecrust and homemade French bread was divine. Oh, and the boxed Annie's mac and cheese I'm eating right now is super tasty. And you thought I had a refined palate...
Television and children’s books. The stories that keep me laughing, crying, and laughing again. The stories I can get lost in. Comfort shows, comfort books, the characters I know better than real people sometimes. That whole other world I can get lost in.
A car. It’s much nicer to drive than it is to bike from Oakland to San Jose. The freedom it gives me to visit my mom is truly a gift.
My roommates, both current and past. These women keep me sane, and get to see the good, the bad, and they ugly of my life. Without them I’d lose it – they really are my rocks.
My friends and community. I have the best support system I could ever dream of. And they’re hilarious – who else would appreciate the Muppets, or the new version of Footloose, or my need to be ridiculous, and get Frosty’s after a long meeting?
My family. And boy, do we decorate a house for Christmas! It’s always good when we’re together.
But mostly, I’m thankful for my mom. I’m thankful for the fact that she’s still with us this Thanksgiving. More than anything else, I’m thankful that I get to be with her, for as long as we have together.
Monday, November 28, 2011
Wednesday, November 23, 2011
Coolest Cake Ever (and it was tasty, too!)
We just finished our City Councilman Cake. Yes, that’s right folks, a City Councilman Cake.
No, not made out of City Councilman (eww) or in the shape of a City Councilman (also eww). But given to us by a San Jose City Councilman.
Apparently my dad is famous. Or popular. Or both?
Whichever he is, he warrants a cake from our City Councilman. Not just a cake, actually, a whole meal.
Yah, my dad’s a big deal.
No, not made out of City Councilman (eww) or in the shape of a City Councilman (also eww). But given to us by a San Jose City Councilman.
Apparently my dad is famous. Or popular. Or both?
Whichever he is, he warrants a cake from our City Councilman. Not just a cake, actually, a whole meal.
Yah, my dad’s a big deal.
Losing
My mom is losing hair. And losing words. And losing energy. Apparently radiation makes you a loser. (Bad dum, ching! In case you were wondering, that was the drum thing at the end of a punch line. That’s what it sounds like in my head.)
It’s really discouraging to see her losing so much. Especially the speech, which is (probably… hopefully…) a byproduct of losing energy. We can’t have the same level of conversations we had been having. And she gets even more frustrated, since just a few days ago she was able to communicate better. I just miss being able to talk, really talk, with my mom.
And the whole losing fistfuls of hair thing? Kinda gross. I’m just sayin’.
It’s really discouraging to see her losing so much. Especially the speech, which is (probably… hopefully…) a byproduct of losing energy. We can’t have the same level of conversations we had been having. And she gets even more frustrated, since just a few days ago she was able to communicate better. I just miss being able to talk, really talk, with my mom.
And the whole losing fistfuls of hair thing? Kinda gross. I’m just sayin’.
Implode
I told myself the reason I stopped writing blog entries as often was because nothing was new - everything I was thinking and feeling was a repeat of what I’d already thought and felt. I mean, it’s certainly not as dramatic as it was when this all first started.
But really, that’s a lie. I’m just hiding. Hiding from what I’m thinking and feeling.
And I’m just tired. Tired of thinking, tired of feeling, tired of running around each week to get everything done and still get out to San Jose. Tired of feeling transient, especially when I’m sleeping on an air mattress at least two nights out of the week.
Tired, tired, tired. Sometimes I just wish I could be numb. But I’ve been reading Harry Potter recently (Harry Potter and the Order of the Phoenix, book 5 of the series, and yes, I know I’m a nerd) and Dumbledore has some things to say about that. Namely:
Whether I trust Dumbledore or not, I probably can’t keep running from my pain. Not for the long term, anyway.
But if I do sometimes run, please let me, okay? Otherwise I might implode.
But really, that’s a lie. I’m just hiding. Hiding from what I’m thinking and feeling.
And I’m just tired. Tired of thinking, tired of feeling, tired of running around each week to get everything done and still get out to San Jose. Tired of feeling transient, especially when I’m sleeping on an air mattress at least two nights out of the week.
Tired, tired, tired. Sometimes I just wish I could be numb. But I’ve been reading Harry Potter recently (Harry Potter and the Order of the Phoenix, book 5 of the series, and yes, I know I’m a nerd) and Dumbledore has some things to say about that. Namely:
“The fact that you can feel pain like this is your greatest strength,” and,
“Harry, suffering like this proves you are still a man! This pain is part of being human –“(Though, just for integrity’s sake, Harry’s response is “THEN – I – DON’T – WANT – TO – BE – HUMAN!” Sometimes I feel like yelling the same thing.)
Whether I trust Dumbledore or not, I probably can’t keep running from my pain. Not for the long term, anyway.
But if I do sometimes run, please let me, okay? Otherwise I might implode.
Thursday, November 17, 2011
Disability (and an update on insurance)
Remember how we were maybe going to have to switch insurance?
Long story short: We’re not going to have to switch insurance. Thank you Jesus.
Long story short: We’re not going to have to switch insurance. Thank you Jesus.
We’ll be able to stay with Kaiser for a long, long time. It’s actually a better deal for the church conference, and a better deal for us, so it works out well all around.
Another long story short: my dad is going on Disability. He’s been thinking about it for a while, and now with needing to take care of my mom, his pain has increased, and he just doesn’t have enough hours in the day to care for my mom, care for himself, and pastor a church. He still hopes to be involved with the church a bit, but he just can’t do it full time.
So another prayer request: please pray that Kaiser actually accepts his Disability claim. He has the backing of his doctors, but the insurance side of things has to go through. Please pray for favor with the insurance company, and fairness in their dealings with us. Our family’s medical costs are ridiculous (with both my mom and my dad having LOTS of medication, surgeries and doctor’s care) so please pray that that doesn’t count against us.
Another long story short: my dad is going on Disability. He’s been thinking about it for a while, and now with needing to take care of my mom, his pain has increased, and he just doesn’t have enough hours in the day to care for my mom, care for himself, and pastor a church. He still hopes to be involved with the church a bit, but he just can’t do it full time.
So another prayer request: please pray that Kaiser actually accepts his Disability claim. He has the backing of his doctors, but the insurance side of things has to go through. Please pray for favor with the insurance company, and fairness in their dealings with us. Our family’s medical costs are ridiculous (with both my mom and my dad having LOTS of medication, surgeries and doctor’s care) so please pray that that doesn’t count against us.
So, how's your mom doing?
She’s doing well, all things considered. (And no, I don’t mean All Things Considered, the radio show I’ve listened a lot to on my drives between Oakland and San Jose recently.)
Let’s break it down:
Stroke Recovery:
Overall, she’s in good spirits. She laughs a lot, talks with us a lot, and seems to be doing pretty well, considering everything. My sister’s dog still doesn’t like her (sad) but my mom has gotten used to that. And she’s always happy when I come home.
Let’s break it down:
Stroke Recovery:
- Her speech is getting better and better. She still slurs her words, and she still has a hard time finding the right words, but after awhile you get used to it, so she becomes easier to understand. It seems that I understand her better than most, so sometimes I act as her translator. She gets frustrated, though, when she can’t explain something she wants to (like the plot of a Gilmore Girls episode that my dad has missed. By the way, they finished the series, and are moving on to The West Wing next. Any other shows ideas for them?)
- Her right leg is getting stronger and stronger. She still can’t feel it, but she can use it more. She’s able to use it to stand up on her own, so she now stands up as we transfer from chair to wheelchair, or wheelchair to bed. She can also use something called a hemi walker to walk around a bit, but not for very long, and she walks very slowly.
- Her right arm has almost no motion. (Have I mentioned that we name her right arm Fred? You’ll hear a lot of “don’t forget Fred!” in our house, since she can’t feel it, or see it, with her right side peripheral vision gone.) She can roll her wrist, sometimes, but that’s about all Fred can do.
- She’s in a little bit of pain. Sometimes she’ll wake up in the middle of the night just aching all over. She started some new medication that seems to help, so hopefully that sticks. Her leg and her hand are also a little swollen, but the doctors seem to think it’s normal-ish.
- She hasn’t been nauseous! That pretty much means she won’t be nauseous for the whole rest of the treatment time, so that’s great.
- She isn’t fatigued yet. But she just finished her two weeks of treatment, and that’s about when the fatigue and hair loss start. So we have to wait and see if that kicks in or not.
- She’ll be done with radiation treatments on December 14th. Or maybe the 15th. Either way, it’s just in time for Christmas.
Overall, she’s in good spirits. She laughs a lot, talks with us a lot, and seems to be doing pretty well, considering everything. My sister’s dog still doesn’t like her (sad) but my mom has gotten used to that. And she’s always happy when I come home.
Saturday, November 5, 2011
Autonomy
“Mourning the loss of one’s autonomy is one of the most agonizing tortures there is.”
- Marie de Hennezel, Intimate Death
My friend leant me this book, Intimate Death. When he first handed it to me, I asked him, “Will I be able to handle this book, or will it just make me cry?” He said he’d thought about that, and he didn’t know. So I decided to give it a shot.
I started reading it tonight. I’ve read thirty pages. And it’s fantastic. (Seriously, book plug: read Intimate Death by Marie de Hennezel. And ignore the fact that I linked to Amazon, and instead buy it at a used or local bookstore, or my mom will make scary faces at you. And not just because she likes to make scary faces, but because she used to work at a local children’s bookstore, Hicklebee’s. Shameless plug for Hicklebee's. And now this is the longest parenthetical phrase I think I’ve ever used. I should have prefaces this with “sidebar,” or “watch out, Katye’s getting on her local and used bookstore soapbox again.” And… DONE!)
Truly, folks, this book is amazing. Marie de Hennezel worked as a psychologist in the first palliative care unit in Paris (read: a Hospice hospital). Her job was to be with people in their last days, months, years. The subtitle of the book is “How the Dying Teach Us How to Live,” and she shares what she’s learned simply by telling stories of her patients, who became her friends and teachers of life as she walked with them towards death.
This quote, this “Mourning the loss of one’s autonomy is one of the most agonizing tortures there is” struck me, in the midst of many other heavy, heartbreaking, and beautiful truths that Marie spoke. (Yes, I will call her Marie. I feel like we have a connection, she and I, and I like to be on a first name basis with my authors. And you think I’m being facetious... now, back to our scheduled programming.)
“Mourning the loss of one’s autonomy is one of the most agonizing tortures there is.”
This quote struck me because I can’t imagine what it’s like, to lose your autonomy.
I can’t imagine what it’s like for my mom to be dependent on other people all the time. To need someone’s help in cutting up her food, in going to the bathroom, in brushing her teeth, in expressing herself. She used to be so independent, and now she literally can’t survive without other people.
And not just to lose your autonomy in the daily things, the basic survival things. But in how long you’re going to live, how much time you have left. I know none of us really have autonomy in how long we’re going to live, but it feels like we do. I feel like I can do whatever I want with my life. I don’t feel like someone has decided my future for me.
But knowing you only have a short time to live – that must feel like all power has been taken from you.
And so “mourning the loss of one’s autonomy is one of the most agonizing tortures there is.” Or so it seems. I’ll have to ask my mom to know for sure.
- Marie de Hennezel, Intimate Death
My friend leant me this book, Intimate Death. When he first handed it to me, I asked him, “Will I be able to handle this book, or will it just make me cry?” He said he’d thought about that, and he didn’t know. So I decided to give it a shot.
I started reading it tonight. I’ve read thirty pages. And it’s fantastic. (Seriously, book plug: read Intimate Death by Marie de Hennezel. And ignore the fact that I linked to Amazon, and instead buy it at a used or local bookstore, or my mom will make scary faces at you. And not just because she likes to make scary faces, but because she used to work at a local children’s bookstore, Hicklebee’s. Shameless plug for Hicklebee's. And now this is the longest parenthetical phrase I think I’ve ever used. I should have prefaces this with “sidebar,” or “watch out, Katye’s getting on her local and used bookstore soapbox again.” And… DONE!)
Truly, folks, this book is amazing. Marie de Hennezel worked as a psychologist in the first palliative care unit in Paris (read: a Hospice hospital). Her job was to be with people in their last days, months, years. The subtitle of the book is “How the Dying Teach Us How to Live,” and she shares what she’s learned simply by telling stories of her patients, who became her friends and teachers of life as she walked with them towards death.
This quote, this “Mourning the loss of one’s autonomy is one of the most agonizing tortures there is” struck me, in the midst of many other heavy, heartbreaking, and beautiful truths that Marie spoke. (Yes, I will call her Marie. I feel like we have a connection, she and I, and I like to be on a first name basis with my authors. And you think I’m being facetious... now, back to our scheduled programming.)
“Mourning the loss of one’s autonomy is one of the most agonizing tortures there is.”
This quote struck me because I can’t imagine what it’s like, to lose your autonomy.
I can’t imagine what it’s like for my mom to be dependent on other people all the time. To need someone’s help in cutting up her food, in going to the bathroom, in brushing her teeth, in expressing herself. She used to be so independent, and now she literally can’t survive without other people.
And not just to lose your autonomy in the daily things, the basic survival things. But in how long you’re going to live, how much time you have left. I know none of us really have autonomy in how long we’re going to live, but it feels like we do. I feel like I can do whatever I want with my life. I don’t feel like someone has decided my future for me.
But knowing you only have a short time to live – that must feel like all power has been taken from you.
And so “mourning the loss of one’s autonomy is one of the most agonizing tortures there is.” Or so it seems. I’ll have to ask my mom to know for sure.
Christmas Songs
I started listening to Christmas music. Yes, I know it’s only October*. Blame it on the West Wing Christmas episode where the Whiffenpoofs sing “O Holy Night.”
But I love Christmas music. Not the cheesy, “Rudolph the Red-Nosed Reindeer” or “Jingle Bell Rock” kind of Christmas music. But the old hymns, the “O Come, O Come Emmanuel”, and the “O Holy Night”, and the Sojourn album “Advent Songs.”
But listening to Christmas music makes me think of how different this Christmas is going to be. Christmas has always been a time of great tradition for our family – Christmas breakfast is always cinnamon rolls, we have a specific present-opening order, and we have our Christmas Eve church services where we see friends we haven’t seen in a year. But I don’t know what this Christmas is going to look like in comparison. Will we go to the Christmas Eve services? And Christmas is on a Sunday this year, so how will that work? (By the way, Christmas on a Sunday when your father is a pastor is always complicated….) And what will the day look like? I know I’m going to make cinnamon rolls, but will they taste as good as my mom’s?
Really it’s not about Christmas. Really it’s about how much has changed, and how hard that is. Christmas is just an easy yardstick to measure against.
But I love Christmas music. Not the cheesy, “Rudolph the Red-Nosed Reindeer” or “Jingle Bell Rock” kind of Christmas music. But the old hymns, the “O Come, O Come Emmanuel”, and the “O Holy Night”, and the Sojourn album “Advent Songs.”
But listening to Christmas music makes me think of how different this Christmas is going to be. Christmas has always been a time of great tradition for our family – Christmas breakfast is always cinnamon rolls, we have a specific present-opening order, and we have our Christmas Eve church services where we see friends we haven’t seen in a year. But I don’t know what this Christmas is going to look like in comparison. Will we go to the Christmas Eve services? And Christmas is on a Sunday this year, so how will that work? (By the way, Christmas on a Sunday when your father is a pastor is always complicated….) And what will the day look like? I know I’m going to make cinnamon rolls, but will they taste as good as my mom’s?
Really it’s not about Christmas. Really it’s about how much has changed, and how hard that is. Christmas is just an easy yardstick to measure against.
*I do know it's now November, but I wrote this mid-October. I wanted to show my ridiculous love for Christmas songs, and stay as truthful as possible, even with less important details like how inappropriately early I really start listening to seasonal music
Wednesday, November 2, 2011
Chemo
My mom started chemo today. My mom started chemo today. My mom started chemo today.
I keep repeating these words over and over again in my head, because it’s the only way they’re going to feel real.
Chemo and radiation, actually. Not just chemo.
Six weeks. She should be done December 15. Just in time for Christmas.
And here I am, worried that my sore throat, which in all likelihood is just a little sore for no real reason and probably doesn’t indicate any contagious disease that could be passed to my mom in her weakened-immune-system state, is some ridiculous cold that would keep me from seeing her this weekend. Worried that my roommate who felt really crappy today might pass on whatever bug she has, which would keep me from seeing my mom this weekend. Worried that I’ll have a cold next weekend when my extended family comes to visit, or that I’ll be sniffly on Thanksgiving, or that I’ll have a fever on Christmas.
That is, I’m worried about these things when I actually remember that my mom started chemo today. Chemo and radiation. The rest of the time it just seems unreal.
I keep repeating these words over and over again in my head, because it’s the only way they’re going to feel real.
Chemo and radiation, actually. Not just chemo.
Six weeks. She should be done December 15. Just in time for Christmas.
And here I am, worried that my sore throat, which in all likelihood is just a little sore for no real reason and probably doesn’t indicate any contagious disease that could be passed to my mom in her weakened-immune-system state, is some ridiculous cold that would keep me from seeing her this weekend. Worried that my roommate who felt really crappy today might pass on whatever bug she has, which would keep me from seeing my mom this weekend. Worried that I’ll have a cold next weekend when my extended family comes to visit, or that I’ll be sniffly on Thanksgiving, or that I’ll have a fever on Christmas.
That is, I’m worried about these things when I actually remember that my mom started chemo today. Chemo and radiation. The rest of the time it just seems unreal.
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