My mom died. She passed away in her sleep, sometime between when my dad went to bed at midnight and when he woke up to give her medicine at 2am.
April 17th - a new day to mark. April 17th between 12am and 2am.
(I think it's closer to 2am though - I woke up at 1:57ish with this feeling that something had happened.)
She looked the same as she has for the past few days, except she wasn't breathing anymore.
I love you very much, Mom. And I know this is one more milestone on the long journey to say goodbye.
Showing posts with label updates. Show all posts
Showing posts with label updates. Show all posts
Wednesday, April 17, 2013
Tuesday, April 16, 2013
Really asleep
She's really asleep now. Her eyes don't open, she doesn't move, she doesn't whisper. She doesn't respond at all.
But we still talk to her. Why not? She's still in there somewhere, hearing everything we say - or at least I hope she is. And we spend as much time as we can with her, watching TV, eating meals in her room so she's not alone.
Her heart rate is up, and her blood oxygen levels are down. She's taking about 30 breaths a minute - they're very quick and shallow. She has a fever. Somewhere in there it means that her body is shutting down. Soon, soon, she won't be in pain, and she won't be held back by a broken body. Soon, she'll be gone.
But we still talk to her. Why not? She's still in there somewhere, hearing everything we say - or at least I hope she is. And we spend as much time as we can with her, watching TV, eating meals in her room so she's not alone.
Her heart rate is up, and her blood oxygen levels are down. She's taking about 30 breaths a minute - they're very quick and shallow. She has a fever. Somewhere in there it means that her body is shutting down. Soon, soon, she won't be in pain, and she won't be held back by a broken body. Soon, she'll be gone.
Monday, April 15, 2013
Sci-Fi
This morning when I went in to say good morning to my mom I noticed the veins on her forehead. They look like they're popping out of her forehead and they're a really deep blue. I can't tell if her skin is just getting more transparent or if her veins are working harder and therefore sticking out more. Either way it reminds me of the plot if some sci-fi show - I'm not sure which one, but I'm sure if I looked through the episodes of all the Star Treks, all the Stargates and The Outer Limits (movies included) there'd be something about veins popping out of foreheads.
Sunday, April 14, 2013
Quickly
It's coming quickly now, and I want it too. I don't want her to be stuck in a body that can't talk, can't move, can't respond to the people she loves.
We're as ready as we'll ever be, and I think she's ready too. Please Jesus, bring her home quickly.
We're as ready as we'll ever be, and I think she's ready too. Please Jesus, bring her home quickly.
Eyes closed: addendum
She did open her eyes today. Just for a few seconds.
I went in to tell her a few things, some of those last things I'd already told her but wanted to tell her again, to make sure she knew. And as I was talking to her, she opened her eyes. I'd say something, and she'd open her left eye for a few seconds, and look at me, lovingly. When I stopped talking she'd close her eye again, and she'd open it when I said something important.
She can't move anything else. She can't move her mouth or arms or legs. I don't think she could shake her head if she tried.
But she still knows it's me. She can still hear me and respond to me, even if it's just by lifting an eyelid for a few seconds at a time.
I went in to tell her a few things, some of those last things I'd already told her but wanted to tell her again, to make sure she knew. And as I was talking to her, she opened her eyes. I'd say something, and she'd open her left eye for a few seconds, and look at me, lovingly. When I stopped talking she'd close her eye again, and she'd open it when I said something important.
She can't move anything else. She can't move her mouth or arms or legs. I don't think she could shake her head if she tried.
But she still knows it's me. She can still hear me and respond to me, even if it's just by lifting an eyelid for a few seconds at a time.
Eyes closed
Every day she slips a little farther into sleep.
Thursday she was awake for an hour in the morning - talking, joking, eyes open and everything.
Friday she only opened her eyes for about 10 minutes, but she was having a harder time speaking. She couldn't speak above a whisper, but she was still responding when we talked to her. When I told I loved her very much, she responded with "I know."
Saturday she only opened her eyes while she was getting checked out by the nurse - and it was mostly because the blood pressure cuff hurt her. But she still responded, with her eyes closed, when I told her I loved her - she whispered "I love you too."
Today, Sunday, she hasn't opened her eyes at all. She can barely speak - it's pretty much an unintelligible whisper. Her breathing is really shallow - yesterday the nurse said her heart rate was high and her blood oxygen was low, which means we're getting close to the end. So Dad and I have been sitting with her, watching golf as she sleeps. (Yes, I actually enjoy watching golf, especially when I'm watching the first Australian win a Masters, ever!) We'll sit here with her as long as we can, as we let her slip away.
Thursday she was awake for an hour in the morning - talking, joking, eyes open and everything.
Friday she only opened her eyes for about 10 minutes, but she was having a harder time speaking. She couldn't speak above a whisper, but she was still responding when we talked to her. When I told I loved her very much, she responded with "I know."
Saturday she only opened her eyes while she was getting checked out by the nurse - and it was mostly because the blood pressure cuff hurt her. But she still responded, with her eyes closed, when I told her I loved her - she whispered "I love you too."
Today, Sunday, she hasn't opened her eyes at all. She can barely speak - it's pretty much an unintelligible whisper. Her breathing is really shallow - yesterday the nurse said her heart rate was high and her blood oxygen was low, which means we're getting close to the end. So Dad and I have been sitting with her, watching golf as she sleeps. (Yes, I actually enjoy watching golf, especially when I'm watching the first Australian win a Masters, ever!) We'll sit here with her as long as we can, as we let her slip away.
Wednesday, April 10, 2013
Awake
My mom is most awake in the afternoons. She wakes up when we give her medicine and stays awake-ish for a few hours. Today she was awake from about 10:30am til 3pm.
But she's awake-ish, not awake. She kinda responds to us, but most of the time she stares off into space and can't answer our questions.
But tonight, a little after 9pm she was awake. I mean awake awake. She was the most lucid she's been in at least a week. She laughed and joked (we even did our favorite "funny looking - pow!" joke, which she hasn't understood for weeks), she was responding in sentences instead of syllables, and she even initiated thoughts. Granted, there was one moment when she told me to change my jeans because they were bothering her, which was a little weird, but she actually used the word "bothering" so I'm going to count it as mostly normal.
Her eyes started to droop a little before 10pm, so it wasn't a long period of lucidity, but it was a sweet one, and it was beautiful.
But she's awake-ish, not awake. She kinda responds to us, but most of the time she stares off into space and can't answer our questions.
But tonight, a little after 9pm she was awake. I mean awake awake. She was the most lucid she's been in at least a week. She laughed and joked (we even did our favorite "funny looking - pow!" joke, which she hasn't understood for weeks), she was responding in sentences instead of syllables, and she even initiated thoughts. Granted, there was one moment when she told me to change my jeans because they were bothering her, which was a little weird, but she actually used the word "bothering" so I'm going to count it as mostly normal.
Her eyes started to droop a little before 10pm, so it wasn't a long period of lucidity, but it was a sweet one, and it was beautiful.
Tuesday, April 9, 2013
Sleeping
Today my mom was only awake for about 4 hours. Yesterday it was 6. Tomorrow who knows.
I'll just keep telling her that I love her, as often as I can. And, in her more lucid moments we'll just keep joking like we always have.
I'll just keep telling her that I love her, as often as I can. And, in her more lucid moments we'll just keep joking like we always have.
Sunday, April 7, 2013
Asleep
Today my mom didn’t wake up until 12:30pm. Considering she went to be at 9:30pm last night, that’s a lot of sleep – a good 15 hours.
It’s not surprising, though. That’s what it’s supposed to be like, at the end. She’s just supposed to sleep more and more until she sleeps all day long, and eventually passes.
Today is also the first day since she got home from the hospital that she’s spent the day in bed – this is the first time in one year, six months, two weeks and four days that she hasn’t gotten up to sit in her comfy chair in the living room. This is the first time she’s been too tired to get up.
And it’s still not surprising. On Wednesday (her birthday) a hospice nurse put a catheter in because she couldn’t control her bladder. On Thursday she couldn’t remember why she wore glasses, and tried to convince my dad to pull out her catheter because she couldn’t remember what it was for. On Friday she woke up at 11:30am and looked bad all day – in pain and exhausted, but too stubborn to go to bed early. On Saturday we gave her morphine every hour and a half, and she dozed off a lot while we watched TV. She also forgot how to brush her teeth and had a hard time using her fork at dinner.
So it makes sense that today she can’t get out of bed. It makes sense that she can barely speak now, that she’s in more pain, and that she doesn’t want to eat. Sometime in the next few days she probably won’t wake up at all.
And so we’ll move our base of operations to the bedroom – we’ll watch TV, eat meals and hang out with her as she lies in bed. We’ll be here with her until she slips away.
It’s not surprising, though. That’s what it’s supposed to be like, at the end. She’s just supposed to sleep more and more until she sleeps all day long, and eventually passes.
Today is also the first day since she got home from the hospital that she’s spent the day in bed – this is the first time in one year, six months, two weeks and four days that she hasn’t gotten up to sit in her comfy chair in the living room. This is the first time she’s been too tired to get up.
And it’s still not surprising. On Wednesday (her birthday) a hospice nurse put a catheter in because she couldn’t control her bladder. On Thursday she couldn’t remember why she wore glasses, and tried to convince my dad to pull out her catheter because she couldn’t remember what it was for. On Friday she woke up at 11:30am and looked bad all day – in pain and exhausted, but too stubborn to go to bed early. On Saturday we gave her morphine every hour and a half, and she dozed off a lot while we watched TV. She also forgot how to brush her teeth and had a hard time using her fork at dinner.
So it makes sense that today she can’t get out of bed. It makes sense that she can barely speak now, that she’s in more pain, and that she doesn’t want to eat. Sometime in the next few days she probably won’t wake up at all.
And so we’ll move our base of operations to the bedroom – we’ll watch TV, eat meals and hang out with her as she lies in bed. We’ll be here with her until she slips away.
Monday, April 1, 2013
Perpetual motion, and a Q & A
Right now, this near the end, it’s too dangerous to enter into the pain, the grief, the darkness. When I sit still and leave myself open to feel it hurts too much – it overwhelms me, it cripples me and it makes me want to roll up in a ball on my bed and never move.
But right now I can’t afford to go catatonic. Right now I’m in the last days, weeks, months (?) of my mom’s life, and I want to spend as much time as I can with her. Which I can’t do if I’m rolled up in a ball on my bed.
So I keep moving. I keep doing. I keep working, watching TV, cleaning, driving. I don’t stop, I don’t pause, and for now that’s okay. Someday soon things will stop, or at least slow down, and then you’ll find me rolled up in a ball on my bed, and it will almost be a relief.
In the meantime I’m still moving, and people are still wondering how my mom is, and how I’m doing. So here I go, answering the most common questions I get, in case, when you see me, I’m moving too fast to be able to pause and answer from my heart.
“How’s your mom?” She’s dying. Her body is slowly shutting down. She’s in some pain, so she takes morphine every few hours. The morphine helps her to keep talking in 2 – 4 word sentences and sitting up in her chair instead of being in bed all day. She’s still eating and using the bathroom like she always was. Her right side has no strength anymore – it’s basically dead weight. It’s getting harder to lift her and some days I have to call my dad to help me get her from her chair to the wheelchair. But she’s still putting up a fight, and she’s not willing to give in yet. She always stays up until 9pm, even if she’s exhausted, because that’s when she goes to bed.
“How are you doing?” I’m hanging in there. See above to the discussion of perpetual motion. My dad and sister are hanging in there too.
“What are you doing to take care of yourself?” I’m eating, sleeping, exercising, and spending as much time with my mom as possible. Oh, and I’ve stopped feeling guilty for watching so much television. It keeps me going, so it’s totally worth it. Especially Buffy the Vampire Slayer.
“How’s your prayer life?” It’s great (and I'm not saying that sarcastically). It’s integrated. Jesus is with me, and he’s not going anywhere, and I talk to him a lot. It might not look like head bowed, palms together, eyes closed, dear God in heaven kind of prayer, but it works for me.
“Is there anything I can do?” I don’t even know what I can do, so I don’t have a good answer to that question. Lift us up to Jesus or send us good thoughts, suggest good television shows, and just keep being our friends, I guess. Not very tangible, but I guess that’s how it goes.
But right now I can’t afford to go catatonic. Right now I’m in the last days, weeks, months (?) of my mom’s life, and I want to spend as much time as I can with her. Which I can’t do if I’m rolled up in a ball on my bed.
So I keep moving. I keep doing. I keep working, watching TV, cleaning, driving. I don’t stop, I don’t pause, and for now that’s okay. Someday soon things will stop, or at least slow down, and then you’ll find me rolled up in a ball on my bed, and it will almost be a relief.
In the meantime I’m still moving, and people are still wondering how my mom is, and how I’m doing. So here I go, answering the most common questions I get, in case, when you see me, I’m moving too fast to be able to pause and answer from my heart.
“How’s your mom?” She’s dying. Her body is slowly shutting down. She’s in some pain, so she takes morphine every few hours. The morphine helps her to keep talking in 2 – 4 word sentences and sitting up in her chair instead of being in bed all day. She’s still eating and using the bathroom like she always was. Her right side has no strength anymore – it’s basically dead weight. It’s getting harder to lift her and some days I have to call my dad to help me get her from her chair to the wheelchair. But she’s still putting up a fight, and she’s not willing to give in yet. She always stays up until 9pm, even if she’s exhausted, because that’s when she goes to bed.
“How are you doing?” I’m hanging in there. See above to the discussion of perpetual motion. My dad and sister are hanging in there too.
“What are you doing to take care of yourself?” I’m eating, sleeping, exercising, and spending as much time with my mom as possible. Oh, and I’ve stopped feeling guilty for watching so much television. It keeps me going, so it’s totally worth it. Especially Buffy the Vampire Slayer.
“How’s your prayer life?” It’s great (and I'm not saying that sarcastically). It’s integrated. Jesus is with me, and he’s not going anywhere, and I talk to him a lot. It might not look like head bowed, palms together, eyes closed, dear God in heaven kind of prayer, but it works for me.
“Is there anything I can do?” I don’t even know what I can do, so I don’t have a good answer to that question. Lift us up to Jesus or send us good thoughts, suggest good television shows, and just keep being our friends, I guess. Not very tangible, but I guess that’s how it goes.
Friday, March 8, 2013
The cliff and the trampoline
*Disclaimer: this post uses really poor metaphors. I’m not a poet, so that’s just how it goes.
Last Friday my mom fell of the cliff. Everything that could have happened (you know, other than actually dying) did happen. Her right leg stopped working. Her entire right side lost all strength – she couldn’t sit up; instead she was hunched over and to the side. She was so tired she went to bed two hours early. Or at least she tried – instead of falling asleep she threw up all her dinner. She eventually fell asleep, and woke up at about 11:30pm and had to go to the bathroom. My dad took her to the toilet, and then asked me to watch her while he made the bed (she had wet the bed before we could get her up and to the bathroom).
And then she had a seizure. She was sitting on the toilet, mostly asleep. She was holding onto the guiderail with her left hand, to keep herself upright. But her arm started to get shaky, and she started slipping. So I told her to let go of the bar, and held her upright myself. Then her throat started convulsing, and her eyes opened wide and rolled back, and she started shaking. I yelled for my dad, and we somehow got her into the bed (I remember my dad picking her up and carrying her like you would carry a damsel in distress), got hospice on the phone, and got her head up so she wouldn’t choke on whatever you choke on when you’re having a seizure.
After a total of ten minutes or so she came back to consciousness – she opened her eyes normally, instead of exorcist style, she was able to speak a little instead of having a spasming throat. She was able to fall asleep for the night after a few minutes time.
Then Saturday rolled around, and she was exhausted. She could barely get out of bed in the morning. She could barely stay awake in her chair in the living room. We used the bedside (or chair-side) commode instead of taking her to the bathroom because the bathroom was just too far. Every time she used the commode she was in pain – pain from being moved, pain from trying to sit on this awkward contraption, pain from not being able to sit up straight. We were even talking about a catheter, but she really didn’t want one. She took a nap in the afternoon (which she never does) because she was so exhausted.
And I thought that that was it. She’d fallen off the cliff. The descent was steep – steep and a little violent. This was what it would look like from now on – the bedside commode or a catheter, a barely responsive mom stuck in her hospital bed all day long. I knew it had to happen sometime, but I didn’t think it would happen so quickly. It was too fast, too frightening, too painful.
And then Sunday she must have landed on a trampoline that lives somewhere on the side of that cliff (see, really bad metaphor!). Because she bounced back. She’s still tired, still having a hard time speaking, still forgetting what she’s saying in the middle of a sentence. But she can sit up. She can go to the bathroom with relative ease. Her right leg still doesn’t work, but it works well enough to stand up as we transfer her from one chair to another. She’s back to what she was like before the horrible Friday, back to the slow decline we were expecting her to have.
And all I can do is suck in a deep breath – a breath of anticipation, to prepare me for the worst, but also a pausing kind of breath, because we still have more time.
p.s. I'm giving all this detail not to shame my mom, or to incite pity, or to gross anyone out. I'm giving all this detail because it's cathartic, and because there should be no shame in wetting the bed when you're dying from cancer and you can't control your bowels. I hope these details bring dignity to a woman who has lost control of her own body and who is living as best she can.
Last Friday my mom fell of the cliff. Everything that could have happened (you know, other than actually dying) did happen. Her right leg stopped working. Her entire right side lost all strength – she couldn’t sit up; instead she was hunched over and to the side. She was so tired she went to bed two hours early. Or at least she tried – instead of falling asleep she threw up all her dinner. She eventually fell asleep, and woke up at about 11:30pm and had to go to the bathroom. My dad took her to the toilet, and then asked me to watch her while he made the bed (she had wet the bed before we could get her up and to the bathroom).
And then she had a seizure. She was sitting on the toilet, mostly asleep. She was holding onto the guiderail with her left hand, to keep herself upright. But her arm started to get shaky, and she started slipping. So I told her to let go of the bar, and held her upright myself. Then her throat started convulsing, and her eyes opened wide and rolled back, and she started shaking. I yelled for my dad, and we somehow got her into the bed (I remember my dad picking her up and carrying her like you would carry a damsel in distress), got hospice on the phone, and got her head up so she wouldn’t choke on whatever you choke on when you’re having a seizure.
After a total of ten minutes or so she came back to consciousness – she opened her eyes normally, instead of exorcist style, she was able to speak a little instead of having a spasming throat. She was able to fall asleep for the night after a few minutes time.
Then Saturday rolled around, and she was exhausted. She could barely get out of bed in the morning. She could barely stay awake in her chair in the living room. We used the bedside (or chair-side) commode instead of taking her to the bathroom because the bathroom was just too far. Every time she used the commode she was in pain – pain from being moved, pain from trying to sit on this awkward contraption, pain from not being able to sit up straight. We were even talking about a catheter, but she really didn’t want one. She took a nap in the afternoon (which she never does) because she was so exhausted.
And I thought that that was it. She’d fallen off the cliff. The descent was steep – steep and a little violent. This was what it would look like from now on – the bedside commode or a catheter, a barely responsive mom stuck in her hospital bed all day long. I knew it had to happen sometime, but I didn’t think it would happen so quickly. It was too fast, too frightening, too painful.
And then Sunday she must have landed on a trampoline that lives somewhere on the side of that cliff (see, really bad metaphor!). Because she bounced back. She’s still tired, still having a hard time speaking, still forgetting what she’s saying in the middle of a sentence. But she can sit up. She can go to the bathroom with relative ease. Her right leg still doesn’t work, but it works well enough to stand up as we transfer her from one chair to another. She’s back to what she was like before the horrible Friday, back to the slow decline we were expecting her to have.
And all I can do is suck in a deep breath – a breath of anticipation, to prepare me for the worst, but also a pausing kind of breath, because we still have more time.
p.s. I'm giving all this detail not to shame my mom, or to incite pity, or to gross anyone out. I'm giving all this detail because it's cathartic, and because there should be no shame in wetting the bed when you're dying from cancer and you can't control your bowels. I hope these details bring dignity to a woman who has lost control of her own body and who is living as best she can.
Monday, December 10, 2012
Breathe out
Every two months I hold my breath.
Every two months my mom gets another MRI to find out if the cancer has grown yet. So every two months there’s at least one night I really can’t sleep. One day when I’m either distracting myself with work or so distracted from work it’s amazing I get anything done. One day when I vacillate between wanting to call my dad to get the news and avoiding my phone at all costs.
This month, I got to breathe out a little of that breath I’d been holding. This month my mom’s MRI came back clear, meaning the cancer hasn’t yet grown big enough to show up on the scan. Today I know (as much as anyone can know) that I have another two months with my mom.
Two more months. Two more months to keep laughing with her, telling her I love her, working on a scrapbook with her, sharing meals with her. Two more months where I can go out of town with less of a worry that she won’t be there when I get back. Two more months of plans I can make without having to break them. Two more months of this equilibrium I’ve reached. Two more months without expecting things to fall apart.
Two more months. Another Christmas. Another New Years. Another Valentine’s Day. Maybe even another birthday.
Breathe out, Katye. Two more months.
Every two months my mom gets another MRI to find out if the cancer has grown yet. So every two months there’s at least one night I really can’t sleep. One day when I’m either distracting myself with work or so distracted from work it’s amazing I get anything done. One day when I vacillate between wanting to call my dad to get the news and avoiding my phone at all costs.
This month, I got to breathe out a little of that breath I’d been holding. This month my mom’s MRI came back clear, meaning the cancer hasn’t yet grown big enough to show up on the scan. Today I know (as much as anyone can know) that I have another two months with my mom.
Two more months. Two more months to keep laughing with her, telling her I love her, working on a scrapbook with her, sharing meals with her. Two more months where I can go out of town with less of a worry that she won’t be there when I get back. Two more months of plans I can make without having to break them. Two more months of this equilibrium I’ve reached. Two more months without expecting things to fall apart.
Two more months. Another Christmas. Another New Years. Another Valentine’s Day. Maybe even another birthday.
Breathe out, Katye. Two more months.
 |
| Two more months of this! |
Monday, October 15, 2012
Passionate
For my job with InterVarsity’s Urban Projects I recently had to answer the question “What are you passionate about?” This question was a lot harder to answer than I thought it would be. I’ve always been a passionate person, and I can have impassioned arguments about things near to my heart. But recently some of the things I care about have been sidelined as I spend time with my mom. So what am I passionate about? Right now. Not back in college, not when I was teaching, not even when I was in the Servant Partners internship. But what am I passionate about right now?
After mulling (I’m a muller – it always takes me awhile to figure out stuff like this), I came up with two core passions: I’m passionate about helping people live and die with dignity and grace. And I’m passionate about learning and teaching others how to mourn well.
I’m passionate about helping people live and die with dignity and grace. Right now this looks like taking care of my mom, telling her story through this blog. It looks like helping my Spanish-speaking neighbors navigate complicated medical insurance forms that are written in English, or acting as an English-speaking advocate for my apartment complex as we try to get our front gate fixed.
I’m passionate about learning and teaching others how to mourn well. Right now this looks like writing this blog, and kinda just living life.
For me, mourning well right now looks like taking a ballet class. Like doing evening yoga to an Itunes playlist called “Blue,” of some of my more melancholy songs. It means baking my own bread to use for sandwiches, and learning to make my own deodorant and dish soap. It means bawling in my room as I yoga to Billy Joel’s “Lullabye (Good night, my Angel).” It means listening to Bossypants on audio book as I drive back and forth to San Jose. It means rejoicing that my mom’s MRI still isn’t showing visible tumors, and realizing that that means that my mom will be okay through the holidays. It means getting angry that the doctors still can’t figure out why she’s so tired. And it means spending as much time with my mom as I can.
So I guess I am still passionate. For now, the way my passions are being acted on is different than I expected. But I don’t think these passions will go away after this season. I think these are here to stay.
So here’s to learning how to help people live and die with dignity and grace. And here’s to learning how to mourn, and learning how to teach others to mourn well. Here’s to pursuing my passions in all that I do, in every season.
After mulling (I’m a muller – it always takes me awhile to figure out stuff like this), I came up with two core passions: I’m passionate about helping people live and die with dignity and grace. And I’m passionate about learning and teaching others how to mourn well.
I’m passionate about helping people live and die with dignity and grace. Right now this looks like taking care of my mom, telling her story through this blog. It looks like helping my Spanish-speaking neighbors navigate complicated medical insurance forms that are written in English, or acting as an English-speaking advocate for my apartment complex as we try to get our front gate fixed.
I’m passionate about learning and teaching others how to mourn well. Right now this looks like writing this blog, and kinda just living life.
For me, mourning well right now looks like taking a ballet class. Like doing evening yoga to an Itunes playlist called “Blue,” of some of my more melancholy songs. It means baking my own bread to use for sandwiches, and learning to make my own deodorant and dish soap. It means bawling in my room as I yoga to Billy Joel’s “Lullabye (Good night, my Angel).” It means listening to Bossypants on audio book as I drive back and forth to San Jose. It means rejoicing that my mom’s MRI still isn’t showing visible tumors, and realizing that that means that my mom will be okay through the holidays. It means getting angry that the doctors still can’t figure out why she’s so tired. And it means spending as much time with my mom as I can.
So I guess I am still passionate. For now, the way my passions are being acted on is different than I expected. But I don’t think these passions will go away after this season. I think these are here to stay.
So here’s to learning how to help people live and die with dignity and grace. And here’s to learning how to mourn, and learning how to teach others to mourn well. Here’s to pursuing my passions in all that I do, in every season.
Monday, June 25, 2012
Disability
Good news: my dad was officially granted disability benefits. After seven months of fighting for it, my dad is now covered by… whoever cover disability. No more limbo, no more forms, no more hassle. 10 years of disability coverage, until he retires at the age of 65.
A small miracle, in the midst of so much going on. Thank you Jesus.
A small miracle, in the midst of so much going on. Thank you Jesus.
Twice in one week
My mom went into the ER twice this past week. In fact, she was in the same room in the ER twice this past week.
She’s fine now, just to calm any fears.
On Tuesday she was sent in to the ER by her doctor, because she was so constipated she was in serious pain whenever she tried to stand. They were afraid it was a bowel obstruction. After a day of tests they decided it wasn’t, that it was just a result of some seriously constipating medication she takes, and she was sent home. She’s fine now, and back to her normal… regularity.
On Sunday she went into the ER because she got so dizzy whenever she tried to sit up that she fell over. My dad thought at first she might be having another stroke, and he couldn’t get her into the wheelchair without her getting dizzy, so the paramedics came. She wasn’t having a stroke, and after an MRI and some other tests, it’s decided that the dizziness was not caused by the cancer, and probably caused by some antibiotics she was taking. She’s fine now, and able to sit up without a problem.
Two ER visits, two sets of good news. So why am I in such a funk? Why is it that I’m scared all the time, worried that my dad’s phone calls will bring bad news? Why is it that my eyes are puffy and won’t stop leaking?
Before this, I was living in this bearable state of equilibrium, of normalcy. Every time people asked how my mom was, I was able to say “the same.” She was the same – speaking a little, walking a little, watching TV. She was in good spirits, she was feeling all right. Normal.
But these ER visits, they feel like they’ve disturbed the sludge at the bottom of what used to be a peaceful pond. Ugly things, scary things that I’ve forgotten over the past few months are rising to the surface, disturbing the placid waters. Fears, worries, tears. Even though everything is okay again, it doesn’t feel normal any more.
These ER visits mean that things aren’t as stable as they looked. I have to be ready for anything, any news.
So here we go, back to living on the edge.
She’s fine now, just to calm any fears.
On Tuesday she was sent in to the ER by her doctor, because she was so constipated she was in serious pain whenever she tried to stand. They were afraid it was a bowel obstruction. After a day of tests they decided it wasn’t, that it was just a result of some seriously constipating medication she takes, and she was sent home. She’s fine now, and back to her normal… regularity.
On Sunday she went into the ER because she got so dizzy whenever she tried to sit up that she fell over. My dad thought at first she might be having another stroke, and he couldn’t get her into the wheelchair without her getting dizzy, so the paramedics came. She wasn’t having a stroke, and after an MRI and some other tests, it’s decided that the dizziness was not caused by the cancer, and probably caused by some antibiotics she was taking. She’s fine now, and able to sit up without a problem.
Two ER visits, two sets of good news. So why am I in such a funk? Why is it that I’m scared all the time, worried that my dad’s phone calls will bring bad news? Why is it that my eyes are puffy and won’t stop leaking?
Before this, I was living in this bearable state of equilibrium, of normalcy. Every time people asked how my mom was, I was able to say “the same.” She was the same – speaking a little, walking a little, watching TV. She was in good spirits, she was feeling all right. Normal.
But these ER visits, they feel like they’ve disturbed the sludge at the bottom of what used to be a peaceful pond. Ugly things, scary things that I’ve forgotten over the past few months are rising to the surface, disturbing the placid waters. Fears, worries, tears. Even though everything is okay again, it doesn’t feel normal any more.
These ER visits mean that things aren’t as stable as they looked. I have to be ready for anything, any news.
So here we go, back to living on the edge.
Thursday, April 5, 2012
Slipping Away
My mom’s speech is slipping away.
She’s having a harder time speaking – more grasping for words, more frustration when she can’t say what she wants to say, more times when she just can’t finish her sentences because the words just won’t come.
It’s a subtle difference, I guess, unless you’re around her a lot. But I know my dad and I can tell. I know she can tell. She just can’t speak as well as she did before.
The common phrases, the niceties – those have stayed. But she can’t find the words to talk about what the doctor said, or who visited, or who sent her the flowers for her birthday. At least she can still say “I love you.”
We don’t know for sure why her speech is slipping. It might be the chemo (she’s officially getting sick from the chemo. The first month she was really, really tired, this month she had stomach flu-like symptoms). It might be just general tiredness. Or it might be the microtumors that we can’t see on the MRI eating away at the part of her brain that controls her speech.
Whatever the reason, I’m not ready for it. I’ve been really liking this plateau that we’ve been at – this stable place with few surprises. It’s been easier to live life, business as usual (or at least, business as usual since my new usual started in August), without fearing the next traumatic event. It’s been so easy I’d almost forgotten that it’s going to end, that she’s going to eventually going to go downhill, that she’ll slowly go backwards in her progress as the tumors take over.
I don’t know if her speech will improve. I hope it does. But if it doesn’t, I need to start readying myself, whatever that looks like, for what’s coming next. I just wish I knew how to do that.
She’s having a harder time speaking – more grasping for words, more frustration when she can’t say what she wants to say, more times when she just can’t finish her sentences because the words just won’t come.
It’s a subtle difference, I guess, unless you’re around her a lot. But I know my dad and I can tell. I know she can tell. She just can’t speak as well as she did before.
The common phrases, the niceties – those have stayed. But she can’t find the words to talk about what the doctor said, or who visited, or who sent her the flowers for her birthday. At least she can still say “I love you.”
We don’t know for sure why her speech is slipping. It might be the chemo (she’s officially getting sick from the chemo. The first month she was really, really tired, this month she had stomach flu-like symptoms). It might be just general tiredness. Or it might be the microtumors that we can’t see on the MRI eating away at the part of her brain that controls her speech.
Whatever the reason, I’m not ready for it. I’ve been really liking this plateau that we’ve been at – this stable place with few surprises. It’s been easier to live life, business as usual (or at least, business as usual since my new usual started in August), without fearing the next traumatic event. It’s been so easy I’d almost forgotten that it’s going to end, that she’s going to eventually going to go downhill, that she’ll slowly go backwards in her progress as the tumors take over.
I don’t know if her speech will improve. I hope it does. But if it doesn’t, I need to start readying myself, whatever that looks like, for what’s coming next. I just wish I knew how to do that.
Monday, March 19, 2012
How's your mom doing?
I haven’t written about this for awhile. The reason? She’s kinda been the same for the past few months.
Her stroke recovery has pretty much plateaued. Her right arm still doesn’t move (and we still call it Fred). Her right leg moves a little, but she can’t feel it. She walks back and forth to the bathroom a few times a day. Her speech is the same – still slurred or mispronounced, she still often can’t find the right word to say something. She still can’t read or write. But overall we get along. We’ve gotten used to narrowing down concepts until we can guess the word she’s thinking of. (It took me about five minutes the other day to figure out she wanted ketchup with her lunch. You know, that red thing you eat.) We’re used to getting her food, taking her to the bathroom, and helping her get dressed. It feels normal now.
She’s done with radiation (and her hair is still mostly gone, though its slowly growing back). She is still doing chemo, in pill form, five days a month, every month. Her first round of monthly chemo made her ridiculously tired, so we waited an extra month between chemo rounds for her to recover.
She just finished her second round, and she’s still a little more tired than usual. We can tell because it’s harder for her to speak, and she has a harder time doing simple things, like standing up to transfer from her chair to the wheelchair. We’re hoping this round is kinder to her though, otherwise we might stop chemo all together so she can have a fuller life in whatever time she has left.
We’ve found our rhythm. It’s nice, to not see a crisis around every corner. Let’s hope things stay that way, at least for a little while longer.
Her stroke recovery has pretty much plateaued. Her right arm still doesn’t move (and we still call it Fred). Her right leg moves a little, but she can’t feel it. She walks back and forth to the bathroom a few times a day. Her speech is the same – still slurred or mispronounced, she still often can’t find the right word to say something. She still can’t read or write. But overall we get along. We’ve gotten used to narrowing down concepts until we can guess the word she’s thinking of. (It took me about five minutes the other day to figure out she wanted ketchup with her lunch. You know, that red thing you eat.) We’re used to getting her food, taking her to the bathroom, and helping her get dressed. It feels normal now.
She’s done with radiation (and her hair is still mostly gone, though its slowly growing back). She is still doing chemo, in pill form, five days a month, every month. Her first round of monthly chemo made her ridiculously tired, so we waited an extra month between chemo rounds for her to recover.
She just finished her second round, and she’s still a little more tired than usual. We can tell because it’s harder for her to speak, and she has a harder time doing simple things, like standing up to transfer from her chair to the wheelchair. We’re hoping this round is kinder to her though, otherwise we might stop chemo all together so she can have a fuller life in whatever time she has left.
We’ve found our rhythm. It’s nice, to not see a crisis around every corner. Let’s hope things stay that way, at least for a little while longer.
Saturday, January 28, 2012
Normal
It’s been more than five months since my mom’s stroke, and I expect to be normal.
I expect to be able to laugh at people’s jokes, have both ridiculous and deep conversations with friends, work efficiently and well, exercise, cook delicious meals, and just generally be at fully capacity. Oh, and I expect to act and interact like I did before all of this – like nothing has changed.
Except so much has. So much has changed.
And underneath the normal that I’m trying to display lies the not normal – the part of me that is still shaken to my core, the part of me that still can’t believe this is happening. The part of me that wants to respond to people’s polite how-are-you-doings with my fears and worries for my family instead of the standard “I’m fine.”
Luckily, I have a blog to get some of that out, so it doesn’t spill onto an innocent checker at Target, or the random neighbor I meet in the elevator.
So how are you doing, Katye?
Well, I’m worried that my dad might still have a hard time getting on disability through our insurance company. Even though the church is all for it, and all his doctors agree that it’s time, the insurance company spent an hour and a half asking him questions about his medical history, and asking him when he’s going to go back to work again (umm, hello, he has a degenerative illness, he’s not going back to work. Read his file already!)
I’m worried because my mom is really tired, more than she was before. It might be the chemo (she’s taking chemo five days out of the month, and they’re giving her a higher dose than before), but it’s making it hard. She can’t even transfer from her chair to the wheelchair in the evenings without my dad almost lifting her, and she has a harder time speaking when she’s tired.
I’m irritated because my mom’s physical therapist said that its alright that my mom is almost falling when she walks (the therapist is trying to change her gait and have her use a cane instead of a walker), as long as there’s someone there to catch her. HOW IS IT OKAY THAT MY MOM HAS NEARLY FALLEN FOUR TIMES IN THE LAST WEEK? I’m all for challenging her, but not when it could severely hurt her.
I’m frustrated because I want to be fully there in my internship, at work, with my family, and with my friends, but I just can’t do it – I just don’t have the emotional and physical energy. I’m frustrated because I’m sick of relying on a sleeping pill to help me fall asleep every night. And I’m frustrated because this blog post is not the well-composed piece of art I expected it to be.
But probably, if you asked me how I was doing in real life, I’d just say I was fine.
I expect to be able to laugh at people’s jokes, have both ridiculous and deep conversations with friends, work efficiently and well, exercise, cook delicious meals, and just generally be at fully capacity. Oh, and I expect to act and interact like I did before all of this – like nothing has changed.
Except so much has. So much has changed.
And underneath the normal that I’m trying to display lies the not normal – the part of me that is still shaken to my core, the part of me that still can’t believe this is happening. The part of me that wants to respond to people’s polite how-are-you-doings with my fears and worries for my family instead of the standard “I’m fine.”
Luckily, I have a blog to get some of that out, so it doesn’t spill onto an innocent checker at Target, or the random neighbor I meet in the elevator.
So how are you doing, Katye?
Well, I’m worried that my dad might still have a hard time getting on disability through our insurance company. Even though the church is all for it, and all his doctors agree that it’s time, the insurance company spent an hour and a half asking him questions about his medical history, and asking him when he’s going to go back to work again (umm, hello, he has a degenerative illness, he’s not going back to work. Read his file already!)
I’m worried because my mom is really tired, more than she was before. It might be the chemo (she’s taking chemo five days out of the month, and they’re giving her a higher dose than before), but it’s making it hard. She can’t even transfer from her chair to the wheelchair in the evenings without my dad almost lifting her, and she has a harder time speaking when she’s tired.
I’m irritated because my mom’s physical therapist said that its alright that my mom is almost falling when she walks (the therapist is trying to change her gait and have her use a cane instead of a walker), as long as there’s someone there to catch her. HOW IS IT OKAY THAT MY MOM HAS NEARLY FALLEN FOUR TIMES IN THE LAST WEEK? I’m all for challenging her, but not when it could severely hurt her.
I’m frustrated because I want to be fully there in my internship, at work, with my family, and with my friends, but I just can’t do it – I just don’t have the emotional and physical energy. I’m frustrated because I’m sick of relying on a sleeping pill to help me fall asleep every night. And I’m frustrated because this blog post is not the well-composed piece of art I expected it to be.
But probably, if you asked me how I was doing in real life, I’d just say I was fine.
Sunday, January 8, 2012
Phew
On Friday my family and I went to my mom’s radiation follow-up appointment. She got an MRI, and then we met with the nurse practitioner who specializes in my mom’s type of cancer, glioblastoma.
I was really worried about this appointment. This was day we were going to find out what her brain looks like after the radiation and chemo. This was the day we were going to find out how much more time my mom has.
But after all the worry, we got GREAT news.
Her MRI looked as good as it could possibly be. Which means that there was no visible tumor in her brain. (There are still microscopic tumor cells, but no visible tumor is really good.) The nurse practitoner also said that generally it takes 12 to 16 months for the tumor to grow back enough to be visible on an MRI.
Translation: I will most likely (statistically) have another year with my mom. More than another year with my mom, actually.
Best. News. Ever.
A whole nother year. Another birthday, another Christmas. Enough time to finish our scrapbook, and to make one for my sister. Enough time to watch hours and hours of Gilmore Girls (again). Enough time to just be with my mom, be with my whole family. (Okay, yes, even more time would be even better. But at this point, a year or more feels like greatest and most unexpected gift.)
It feels so freeing, like a huge weight has been lifted from my shoulders. Or really from my chest – I can breathe again. It’s the biggest relief to know that I don’t have to rush time with my mom. I feel like I can finally take a breath, and find a better balance between my family in San Jose, my community in Oakland, and my friends everywhere. I’m running a marathon now, not a sprint, and my pace can be so much more sustainable.
And you wanna know what I did to celebrate? I played Just Dance 3 and Fruit Ninja on the Kinect with my friends on Saturday, and went to the beach on Sunday. And my roommate has promised me froyo.
And so I say "phew."
I was really worried about this appointment. This was day we were going to find out what her brain looks like after the radiation and chemo. This was the day we were going to find out how much more time my mom has.
But after all the worry, we got GREAT news.
Her MRI looked as good as it could possibly be. Which means that there was no visible tumor in her brain. (There are still microscopic tumor cells, but no visible tumor is really good.) The nurse practitoner also said that generally it takes 12 to 16 months for the tumor to grow back enough to be visible on an MRI.
Translation: I will most likely (statistically) have another year with my mom. More than another year with my mom, actually.
Best. News. Ever.
A whole nother year. Another birthday, another Christmas. Enough time to finish our scrapbook, and to make one for my sister. Enough time to watch hours and hours of Gilmore Girls (again). Enough time to just be with my mom, be with my whole family. (Okay, yes, even more time would be even better. But at this point, a year or more feels like greatest and most unexpected gift.)
It feels so freeing, like a huge weight has been lifted from my shoulders. Or really from my chest – I can breathe again. It’s the biggest relief to know that I don’t have to rush time with my mom. I feel like I can finally take a breath, and find a better balance between my family in San Jose, my community in Oakland, and my friends everywhere. I’m running a marathon now, not a sprint, and my pace can be so much more sustainable.
And you wanna know what I did to celebrate? I played Just Dance 3 and Fruit Ninja on the Kinect with my friends on Saturday, and went to the beach on Sunday. And my roommate has promised me froyo.
And so I say "phew."
Saturday, December 24, 2011
Radiation Update
Last Wednesday my mom finished radiation, and this first round of chemo. She’s so excited to be done with all of that – to not have to go in every day, have them put this weird mask on her face, and zap her head with the radiation thingy.
She’s still missing a lot of hair, and having a hard time speaking. It seems like her speaking has gotten worse in the past few days, and she’s also been feeling more tired. We hope that all of this will regulate when the swelling in her brain caused by the radiation goes down.
She’s still missing a lot of hair, and having a hard time speaking. It seems like her speaking has gotten worse in the past few days, and she’s also been feeling more tired. We hope that all of this will regulate when the swelling in her brain caused by the radiation goes down.
Subscribe to:
Posts (Atom)