On Saturday I went wine tasting in Sonoma for my roommate’s birthday. It was a great day – beautiful weather, the start of fall colors, good people, tasty wine, and a bountiful picnic.
But while I was there I forgot that anything was wrong with my mom.
I didn’t totally forget. I mean, we drove past the hospital she stayed in for rehab on the way up. I talked about helping her paint her nails when my friend gave me a manicure kit as a birthday gift. But the whole day I really didn’t talk about her, no one really asked about her, and I tried to just get lost in the moment – in the tasting, the views, and the company.
And it was great. It was a great day. And yet something just felt… off.
When I got home, and settled down into some introverted time, it all hit me again, almost like it was new. Images of my mom flashed in my mind – my mom lying in the hospital bed that my dad put in their room at home; my mom sitting in her wheelchair as she goes from the living room to the bathroom; my mom in yoga pants and tshirts (a very weird image, since she was always so stylish). And then remembering her voice – hearing her slur words, hearing her struggle for the right vocabulary, seeing her crying when she can’t fully express herself.
And because I had forgotten, or avoided, all of this during the day, it came back all the stronger. It was overwhelming, and almost as shocking as if it had just happened. And that off feeling I had felt all day? I realized that was me knowing what I was doing, knowing that I was trying to hide from reality, and knowing that it was all going to come back sooner or later.
How do I find balance? How do I find balance between the part of me that wants to live life as it used to be and the part of me that wants to be ever-present in this new reality for my family? How do I keep myself from forgetting, while keeping myself from being overwhelmed with grief?
All I know is that I don’t want to forget again, because the remembering hurt too much.
Sunday, October 30, 2011
Wednesday, October 26, 2011
Busy
This week’s weekly visit to my parent’s house was not very fulfilling. Not because of any specific event, not as a result of any drama. I was just busy.
There was work, and then a quick lunch, and then a meeting, and stopping at the used book store, and then coming home and fighting to get the new router to work so my parent’s internet jives with my computer. Now that I write it down it doesn’t seem like I did that much, really.
But what I didn’t get to do today was just spend time with my mom. And that’s why it felt like a busy, unfulfilling day.
All I really want to do when I go home is spend time with her. I don’t want to run errands, I don’t want to do dishes, I don’t want to work, or really do anything, other than be with her. So everything else, even if it’s actually really good (work was good, my meeting was good, going to the used book store was good, fighting for internet was not so good), turns into something that just feels busy.
So how do I do what needs to be done, and still be present with my mom? (Seriously, I’m asking, because I have no idea.)
There was work, and then a quick lunch, and then a meeting, and stopping at the used book store, and then coming home and fighting to get the new router to work so my parent’s internet jives with my computer. Now that I write it down it doesn’t seem like I did that much, really.
But what I didn’t get to do today was just spend time with my mom. And that’s why it felt like a busy, unfulfilling day.
All I really want to do when I go home is spend time with her. I don’t want to run errands, I don’t want to do dishes, I don’t want to work, or really do anything, other than be with her. So everything else, even if it’s actually really good (work was good, my meeting was good, going to the used book store was good, fighting for internet was not so good), turns into something that just feels busy.
So how do I do what needs to be done, and still be present with my mom? (Seriously, I’m asking, because I have no idea.)
Saturday, October 22, 2011
Scrapbook
My mom used to be craftsy. No, not crafty, craftsy. She liked to counter cross-stitch, and scrapbook (yes, all the truly craftsy people use “scrapbook” as a verb).
My friend suggested scrapbooking as an activity that my mom and I could share, now, even with her limitations. I’d do all the cutting, of course, but my mom could pick the colors, and the pictures, and tell me where to put things on the page, and maybe even use the glue. I suggested it to my mom today, and she thought it was a great idea. It’s a perfect combo of therapy and mother-daughter bonding.
After I suggested it, my mom started telling me about this scrapbook she had been making me, before the stroke. She told me that it was almost done, there were just a few things she needed to do, a few pictures and words she needed to add.
That scrapbook was out on the dining room table when I first got to my parents house, after my mom was settled in the ICU on the day of the stroke. It took me a few days to look at it, and realize it was for me. (Like I said, she was crafsty, and always making something or another. I didn’t think anything of having scrapbooking stuff out.)
When I finally sat down and flipped through the pages, and discovered she had put together a whole scrapbook, all about me, with pictures of me at birthday parties and graduations, on family trips and at school events, and all right before she had the stroke, I lost it. I flipped through the pages over and over again, taking in the pictures and memorizing her handwriting, with tears streaming down my face. Of all the amazing gifts she could have given me, this is the best.
I’m glad we still can finish it together. And maybe, if you're lucky, I'll show it to you sometime.
My friend suggested scrapbooking as an activity that my mom and I could share, now, even with her limitations. I’d do all the cutting, of course, but my mom could pick the colors, and the pictures, and tell me where to put things on the page, and maybe even use the glue. I suggested it to my mom today, and she thought it was a great idea. It’s a perfect combo of therapy and mother-daughter bonding.
After I suggested it, my mom started telling me about this scrapbook she had been making me, before the stroke. She told me that it was almost done, there were just a few things she needed to do, a few pictures and words she needed to add.
That scrapbook was out on the dining room table when I first got to my parents house, after my mom was settled in the ICU on the day of the stroke. It took me a few days to look at it, and realize it was for me. (Like I said, she was crafsty, and always making something or another. I didn’t think anything of having scrapbooking stuff out.)
When I finally sat down and flipped through the pages, and discovered she had put together a whole scrapbook, all about me, with pictures of me at birthday parties and graduations, on family trips and at school events, and all right before she had the stroke, I lost it. I flipped through the pages over and over again, taking in the pictures and memorizing her handwriting, with tears streaming down my face. Of all the amazing gifts she could have given me, this is the best.
I’m glad we still can finish it together. And maybe, if you're lucky, I'll show it to you sometime.
Broken
My mom told me that the other day she was sitting, watching Gilmore Girls, and having a jolly good time (okay, so she didn’t say “jolly good time.” I’m paraphrasing), just watching and laughing, really enjoying herself. And then she looked down – she saw her arm, and her leg, and she remembered she was broken.
That was the word she used: broken.
She said that it feels like everything is different. Almost like she lived one life before the stroke, and is living a different life now.
She said it was nice to forget, for awhile, that everything was different. It was nice to feel, even for a second, that nothing had changed. It was nice to forget, for those few moments, that she was broken.
That was the word she used: broken.
She said that it feels like everything is different. Almost like she lived one life before the stroke, and is living a different life now.
She said it was nice to forget, for awhile, that everything was different. It was nice to feel, even for a second, that nothing had changed. It was nice to forget, for those few moments, that she was broken.
Thursday, October 20, 2011
Half of the time
Half of the time my mom calls me by my name, and half of the time she doesn’t. Most of the time, when she calls me by a different name, she calls me by my sister’s name. And sometime she calls my sister by my name. I always know what she means, but it doesn’t make it less hard.
It’s a short-term memory thing. And the fact that my name is kinda hard to say – hard vowels and hard consonants and all that. But mostly it’s the short-term memory thing. She can’t remember much in the short term; you ask her to remember three words, and she can barely remember them long enough to repeat them. Five minutes later they’re totally gone.
I guess I should be glad that she can say my name at all – and I am. But it would be even nicer if she could call me by my name more than half the time.
It’s a short-term memory thing. And the fact that my name is kinda hard to say – hard vowels and hard consonants and all that. But mostly it’s the short-term memory thing. She can’t remember much in the short term; you ask her to remember three words, and she can barely remember them long enough to repeat them. Five minutes later they’re totally gone.
I guess I should be glad that she can say my name at all – and I am. But it would be even nicer if she could call me by my name more than half the time.
50/50
I just watched the movie 50/50. And it was amazing. The perfect mix of hilarity and poignancy. Basically, my friend and I went back and forth between bawling and laughing hysterically.
I feel like the gamut of emotions it provoked are pretty much how I feel on a regular basis. Basically, this movie felt like my life, minus the whole using cancer to get a date thing. (Don’t worry, I didn’t give away any of the plot, that part is all over the previews).
Anyway, a perfect movie for where I am right now. Seriously, I’m still laughing. And I really needed that.
I feel like the gamut of emotions it provoked are pretty much how I feel on a regular basis. Basically, this movie felt like my life, minus the whole using cancer to get a date thing. (Don’t worry, I didn’t give away any of the plot, that part is all over the previews).
Anyway, a perfect movie for where I am right now. Seriously, I’m still laughing. And I really needed that.
Wednesday, October 19, 2011
Scared
Today I drove my parents to my mom’s second radiology appointment – the CT scan & mask making appointment.
As we were sitting in the waiting room, my mom looked at us and said, with tears running down her face, “I don’t want to do this. I’m scared.” She sounded so helpless.
So there we sat, in the waiting room, all of us with tears running down our faces. We must have looked so ridiculous, my dad in his scooter, with his cane and his eyepatch covering the eye he just had surgery on, my mom in her wheelchair, in workout clothes, and with a patch of hair that’s shorter and greyer than the rest, from where they shaved her head for her surgery. And all of us crying, and then holding hands, praying together.
It’s really hard to hear your mom say, through tears, “I’m scared.” It’s even harder when she speaks with her slurred words, and looks as innocent and as honest as a little child. I’m glad she told us, and I’m glad I got to be there with her. But it doesn’t make it any easier.
She decided to still go through with the CT scan and the mask, even though we assured her that if she didn’t want to, she didn’t have to. She seemed in better spirits for the rest of the day, after it was over.
But I don’t know if I’ll ever be able to forget that child-like-ness, or that fear, or those tears. I wish I could protect from the pain, as much as she protected me from pain when I was a kid.
Maybe this will just be our weird, somewhat morbid version of Freak Friday.
As we were sitting in the waiting room, my mom looked at us and said, with tears running down her face, “I don’t want to do this. I’m scared.” She sounded so helpless.
So there we sat, in the waiting room, all of us with tears running down our faces. We must have looked so ridiculous, my dad in his scooter, with his cane and his eyepatch covering the eye he just had surgery on, my mom in her wheelchair, in workout clothes, and with a patch of hair that’s shorter and greyer than the rest, from where they shaved her head for her surgery. And all of us crying, and then holding hands, praying together.
It’s really hard to hear your mom say, through tears, “I’m scared.” It’s even harder when she speaks with her slurred words, and looks as innocent and as honest as a little child. I’m glad she told us, and I’m glad I got to be there with her. But it doesn’t make it any easier.
She decided to still go through with the CT scan and the mask, even though we assured her that if she didn’t want to, she didn’t have to. She seemed in better spirits for the rest of the day, after it was over.
But I don’t know if I’ll ever be able to forget that child-like-ness, or that fear, or those tears. I wish I could protect from the pain, as much as she protected me from pain when I was a kid.
Maybe this will just be our weird, somewhat morbid version of Freak Friday.
Saturday, October 15, 2011
Please Pray: Health Insurance
So my dad is a pastor in the United Methodist Church (UMC), and he has been for the last 30 years. The UMC conference (that is, area that our church is in) has a health insurance plan that isn’t Kaiser, but it’s more expensive than Kaiser. So for the last 15 years or so, we’ve had Kaiser insurance instead, which our church pays for.
But we might have to change insurance, because of the conference policy, and how all the rules and politics work. We might have to switch off of Kaiser insurance, to the conference policy, in the middle of all of this.
That is crazy. This is crazy. Thinking of having to find new doctors, new specialists, new people who we’d have to tell our story to over and over again, in the midst of my mom’s cancer & stroke recovery, in the midst of my dad’s disability and chronic pain. Having to give up my dad’s amazing pain specialist who understands reflex sympathetic dystrophy (something that few doctors know anything about). Having to give up my mom’s brain cancer specialist, who’s one of the best in the field right now. Having to switch in the midst of all my mom’s medication, and chemo, and all my dad’s pain medication. As if we don’t have enough to deal with.
My dad is going to call people in the conference (the insurance guy, my dad’s supervisor, and other people who can advocate for us) and try to get an exception for our family, so we don’t have to switch insurance, or pay for the Kaiser insurance ourselves. Please, please, please pray that the insurance guy, and everyone else, finds favor for my family, and makes an exception. Please pray that our conference acts as a church, a family, instead of just a business. And please pray that it happens fast, since we have to decide what to do by November 11. Please pray that we get to keep our insurance, without having to pay for it ourselves.
But we might have to change insurance, because of the conference policy, and how all the rules and politics work. We might have to switch off of Kaiser insurance, to the conference policy, in the middle of all of this.
That is crazy. This is crazy. Thinking of having to find new doctors, new specialists, new people who we’d have to tell our story to over and over again, in the midst of my mom’s cancer & stroke recovery, in the midst of my dad’s disability and chronic pain. Having to give up my dad’s amazing pain specialist who understands reflex sympathetic dystrophy (something that few doctors know anything about). Having to give up my mom’s brain cancer specialist, who’s one of the best in the field right now. Having to switch in the midst of all my mom’s medication, and chemo, and all my dad’s pain medication. As if we don’t have enough to deal with.
My dad is going to call people in the conference (the insurance guy, my dad’s supervisor, and other people who can advocate for us) and try to get an exception for our family, so we don’t have to switch insurance, or pay for the Kaiser insurance ourselves. Please, please, please pray that the insurance guy, and everyone else, finds favor for my family, and makes an exception. Please pray that our conference acts as a church, a family, instead of just a business. And please pray that it happens fast, since we have to decide what to do by November 11. Please pray that we get to keep our insurance, without having to pay for it ourselves.
My Dad's Eye Surgery
Went well. (Sorry, this post is about a week late. I forgot to post it earlier.) His eye is doing what it should be doing at this point, which is good. He also doesn’t have to keep his head down anymore (he kept it down all last week), which is nice, because it hurt his back a lot, and it’s hard to do when trying to take care of my mom. He still can’t drive, but lots of people from the church are able to drive my parents around, so it’s alright for now. All in all, a successful surgery, and recovery is going as it should be. Let’s hope he never has to have this surgery again, and that his sight comes back to normal quickly.
Doctor's Appointment, Part 2
I talked to my parents today about the doctor’s appointment yesterday, the one with the radiologist. No, nothing was wrong (my head just likes to think of the worst possible scenarios). Here’s what’s going to be happening over the next few weeks:
There are a series of four appointments before she starts radiation, in the span of about three weeks. Her first appointment, the one that happened yesterday, was the intro appointment, the one that gives all the information, and collects all the information they need from us.
The second appointment is a CT scan, to make a 3D map of the brain. This will tell them where to irradiate – they’ll only be applying radiation to the portion of her brain, where the tumor was, and in decreasing amounts around the tumor. They’ll completely avoid areas of the brain that deal with hearing and vision, and other important things.
In the second appointment, they’ll also make a mold of my mom’s face. This mold will be what holds her head in place during the radiation treatments. They’ll basically place this thing over her face during each radiation, and bolt it to the table that she’ll lie on, so she doesn’t move her head, and so they don’t irradiate the wrong part of the brain.
The third appointment they’ll do an X-ray, with the mold and everything, to make sure that things are where they should be. If all goes well, and if there is enough time, she might be able to start her first radiation treatment at this appointment. But it all depends on time, and on whether she’s started her chemotherapy – she has to start the chemotherapy (in pill form, taken the night before) because it helps the radiation work better.
The fourth appointment is the radiation treatment, if it doesn’t happen at the third appointment. And then we’re off and running with 6 weeks of radiation (Mondays through Fridays), with chemo every day during those 6 weeks.
There are a series of four appointments before she starts radiation, in the span of about three weeks. Her first appointment, the one that happened yesterday, was the intro appointment, the one that gives all the information, and collects all the information they need from us.
The second appointment is a CT scan, to make a 3D map of the brain. This will tell them where to irradiate – they’ll only be applying radiation to the portion of her brain, where the tumor was, and in decreasing amounts around the tumor. They’ll completely avoid areas of the brain that deal with hearing and vision, and other important things.
In the second appointment, they’ll also make a mold of my mom’s face. This mold will be what holds her head in place during the radiation treatments. They’ll basically place this thing over her face during each radiation, and bolt it to the table that she’ll lie on, so she doesn’t move her head, and so they don’t irradiate the wrong part of the brain.
The third appointment they’ll do an X-ray, with the mold and everything, to make sure that things are where they should be. If all goes well, and if there is enough time, she might be able to start her first radiation treatment at this appointment. But it all depends on time, and on whether she’s started her chemotherapy – she has to start the chemotherapy (in pill form, taken the night before) because it helps the radiation work better.
The fourth appointment is the radiation treatment, if it doesn’t happen at the third appointment. And then we’re off and running with 6 weeks of radiation (Mondays through Fridays), with chemo every day during those 6 weeks.
Friday, October 14, 2011
Doctor's Appointment
I called my dad today, to let him know that I wasn’t going to be going to my parent’s house until tomorrow, instead of tonight, and he said “okay, we can talk about today’s appointment with the radiologist tomorrow, then.”
I forgot about the appointment with the radiologist. So a part of me feels like a horrible daughter for forgetting something so important. I should have remembered, I should have thought about it, prayed about it, written a blog entry to say that it was coming. I should have done something. (Though, don’t worry, the other part of me realizes that I’m not expected to be thinking about my mom and all her appointments every hour of every day, and that it’s okay to be caught up in making pizza, and work, and the other things going on in my life.)
And then he made a point to say we’d talk about it tomorrow. Which makes me nervous. Did something happen? Will she not be able to get radiation? If she does get radiation, will she start soon? Or will she not start for awhile? Does the radiation doctor think it won’t work? Is she not allowed to get more radiation because she had radiation for her breast cancer 15 years ago? AHHHHHHHH!!!!!!!
Stop it, head. Stop guilting me, stop spinning out of control with horrible scenarios. Let me be patient, let me be calm, let me be kind to myself.
I forgot about the appointment with the radiologist. So a part of me feels like a horrible daughter for forgetting something so important. I should have remembered, I should have thought about it, prayed about it, written a blog entry to say that it was coming. I should have done something. (Though, don’t worry, the other part of me realizes that I’m not expected to be thinking about my mom and all her appointments every hour of every day, and that it’s okay to be caught up in making pizza, and work, and the other things going on in my life.)
And then he made a point to say we’d talk about it tomorrow. Which makes me nervous. Did something happen? Will she not be able to get radiation? If she does get radiation, will she start soon? Or will she not start for awhile? Does the radiation doctor think it won’t work? Is she not allowed to get more radiation because she had radiation for her breast cancer 15 years ago? AHHHHHHHH!!!!!!!
Stop it, head. Stop guilting me, stop spinning out of control with horrible scenarios. Let me be patient, let me be calm, let me be kind to myself.
Sunday, October 9, 2011
Dreams
I dreamed about my mom last night. Nothing spectacular happened, she didn’t say anything profound to me, and there wasn’t anything significant going on. But we were in our old house, and she was walking around, between the kitchen, the dining room, and upstairs, just organizing things, doing stuff around the house.
And it felt so real. It looked exactly like it used to. She looked exactly like she used to. Everything was as it used to be.
It’s not fair. (Okay, I normally don’t say things aren’t fair, because what does fair even mean? But that was my first reaction.) I don’t want to think of my mom like she used to be. It’s too much of a stark contrast to how she is now.
I know someday I’ll need to remember my mom as she was, before all this. Someday I’ll have to hold all my memories of my mom together, without comparing one to the other. But right now I can’t. Right now all I can do is see my mom as she is now. Otherwise it hurts too much.
And it felt so real. It looked exactly like it used to. She looked exactly like she used to. Everything was as it used to be.
It’s not fair. (Okay, I normally don’t say things aren’t fair, because what does fair even mean? But that was my first reaction.) I don’t want to think of my mom like she used to be. It’s too much of a stark contrast to how she is now.
I know someday I’ll need to remember my mom as she was, before all this. Someday I’ll have to hold all my memories of my mom together, without comparing one to the other. But right now I can’t. Right now all I can do is see my mom as she is now. Otherwise it hurts too much.
What do you want?
I met with my spiritual director yesterday at my prayer retreat. Not only is my spiritual director awesome in general, but she has a similar story to mine – her father had a cancer caused “stroke”, and died about two months later.
So she gets it. She gets what it’s like to feel like this, to feel like I might not make it through, to feel like it’s a miracle that I even get out of bed in the morning, to feel helpless and perpetually on edge, to feel unable to make even the simplest of decisions. She knows, and she is able to sit with me in it all, and that is beautiful.
During our time together yesterday, she asked me a simple question: “What do you want?” Now, I’ve been really bad at making decisions, but I’ve actually been pretty good about knowing what I need (chocolate, to just read Harry Potter for hours on end, to watch Gilmore Girls with my mom, etc). So when my spiritual director asked me “What do you want?” I had my answer: I want to be with my mom.
I want to be with my mom. As often as I can, for as long as I can. I want to be with my mom. To be in the same room as her, to laugh with her, and cry with her, and just be silly with her. I want to take care of her – to take her to the bathroom, to make her meals, to get my sister’s dog to love her again.
I want to be with my mom. More than anything else, that’s what I want. I don’t really want anything else.
So she gets it. She gets what it’s like to feel like this, to feel like I might not make it through, to feel like it’s a miracle that I even get out of bed in the morning, to feel helpless and perpetually on edge, to feel unable to make even the simplest of decisions. She knows, and she is able to sit with me in it all, and that is beautiful.
During our time together yesterday, she asked me a simple question: “What do you want?” Now, I’ve been really bad at making decisions, but I’ve actually been pretty good about knowing what I need (chocolate, to just read Harry Potter for hours on end, to watch Gilmore Girls with my mom, etc). So when my spiritual director asked me “What do you want?” I had my answer: I want to be with my mom.
I want to be with my mom. As often as I can, for as long as I can. I want to be with my mom. To be in the same room as her, to laugh with her, and cry with her, and just be silly with her. I want to take care of her – to take her to the bathroom, to make her meals, to get my sister’s dog to love her again.
I want to be with my mom. More than anything else, that’s what I want. I don’t really want anything else.
Gentle
I’m at a prayer retreat with my Servant Partners internship this weekend, and we did a Lectio Divina on Matthew 11:28 – 30:
In fact, all that has happened so far has been really, really violent. The stroke itself was violent, the news of the cancer was violent, and on an on and on. Nothing has come up slowly, or quietly, or easily. It has all come quickly, screaming at us, attacking us with its ugliness.
My soul feels mutilated. My soul feels like its been bruised, and stabbed, and broken. My soul has suffered a lot of trauma.
And so I need the gentleness of Jesus. I need his gentle presence, counteracting and overcoming the mutilation, the trauma, the violence. And I need to be gentle to myself, and find people who will be gentle with me.
“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart and you will find rest for your souls. For my yoke is easy and my burden is light”The word that stuck out to me was the word “gentle.” And after sitting with and asking Jesus about it, I know why: because all this stuff with my mom is anything but gentle.
In fact, all that has happened so far has been really, really violent. The stroke itself was violent, the news of the cancer was violent, and on an on and on. Nothing has come up slowly, or quietly, or easily. It has all come quickly, screaming at us, attacking us with its ugliness.
My soul feels mutilated. My soul feels like its been bruised, and stabbed, and broken. My soul has suffered a lot of trauma.
And so I need the gentleness of Jesus. I need his gentle presence, counteracting and overcoming the mutilation, the trauma, the violence. And I need to be gentle to myself, and find people who will be gentle with me.
Gilmore Girls Addendum
Remember how I said I didn’t think I could watch Gilmore Girls anytime soon?
Well, I found a solution: watch it with my mom.
It works really well – she loves it, she’s got a lot of time on her hands, and it’s a beautiful thing that we can share. My dad even likes it!
I just hope we can make it through all seven seasons together.
Well, I found a solution: watch it with my mom.
It works really well – she loves it, she’s got a lot of time on her hands, and it’s a beautiful thing that we can share. My dad even likes it!
I just hope we can make it through all seven seasons together.
Wednesday, October 5, 2011
"I'm glad I'll have more time with you"
When my mom first said this to me today, after we got home from the oncologist, I thought she meant “I’m glad I got to spend more time with you today.” But she didn’t.
She meant: I’ve chosen to do the treatment (radiation and the chemo) and I’m glad I get to be with you a little longer, before I die.
That’s the first time she and I have really talked about the cancer. We talk all the time about her progress in recovering from the stroke – that’s the obvious, easy stuff to talk about. And I’ve talked with my dad a lot about the cancer, and he’s talked with my mom a lot about the cancer. But I hadn’t talked to her at all about the cancer.
And I know she was trying to protect me by not talking about it – still trying to be my mom, still trying to be strong for my sister and I. (I wrote a post about this earlier.) And I know I was trying to still be her baby daughter, still wanting her to take care of me and coddle me like she used to, protecting me from all the worlds ills, and making everything okay.
But today, when me, my sister, my dad and my mom were all in the room when the oncologist said that if she did treatment, her median life expectancy was a year, but if she didn’t do treatment, she would probably only live two or three months, that was when she and I realized we couldn’t pretend, couldn’t avoid it anymore.
She chose to do treatment because she wants more time with us. Because if she didn’t, she could be dead by Christmas, and that’s just not enough time.
So instead she will do treatment, radiation & chemo every day for 6 weeks, and then chemo five days a week for the next year. And maybe with treatment she’ll live til next October, or maybe the October after that or maybe… we don’t know. But however long it is, it’s more time.
If the radiation and the chemo make her too sick, though, she’s going to stop. They’re not supposed to be too bad. (“In 99% of cases, so and so was skipping and jumping* with extra energy from the chemo – its very well tolerated” *skipping and jumping is an exaggeration. Do not try this at home.) But in case they are, she needs to be free to choose a good quality of life for her last days, even if she has fewer days left.
But regardless of the chemo, and the radiation, and her quality of life now (I mean, she can’t pee without help. She can’t dress herself without help.), and all the extra craziness of blood clots and seizures, and even my dad’s eye surgery, she still wants more time. She wants more time with us. She wants more time with me. She said it very clearly to me: “I’m glad I’ll have more time with you.”
And I’m glad that I’ll have more time with her, too.
She meant: I’ve chosen to do the treatment (radiation and the chemo) and I’m glad I get to be with you a little longer, before I die.
That’s the first time she and I have really talked about the cancer. We talk all the time about her progress in recovering from the stroke – that’s the obvious, easy stuff to talk about. And I’ve talked with my dad a lot about the cancer, and he’s talked with my mom a lot about the cancer. But I hadn’t talked to her at all about the cancer.
And I know she was trying to protect me by not talking about it – still trying to be my mom, still trying to be strong for my sister and I. (I wrote a post about this earlier.) And I know I was trying to still be her baby daughter, still wanting her to take care of me and coddle me like she used to, protecting me from all the worlds ills, and making everything okay.
But today, when me, my sister, my dad and my mom were all in the room when the oncologist said that if she did treatment, her median life expectancy was a year, but if she didn’t do treatment, she would probably only live two or three months, that was when she and I realized we couldn’t pretend, couldn’t avoid it anymore.
She chose to do treatment because she wants more time with us. Because if she didn’t, she could be dead by Christmas, and that’s just not enough time.
So instead she will do treatment, radiation & chemo every day for 6 weeks, and then chemo five days a week for the next year. And maybe with treatment she’ll live til next October, or maybe the October after that or maybe… we don’t know. But however long it is, it’s more time.
If the radiation and the chemo make her too sick, though, she’s going to stop. They’re not supposed to be too bad. (“In 99% of cases, so and so was skipping and jumping* with extra energy from the chemo – its very well tolerated” *skipping and jumping is an exaggeration. Do not try this at home.) But in case they are, she needs to be free to choose a good quality of life for her last days, even if she has fewer days left.
But regardless of the chemo, and the radiation, and her quality of life now (I mean, she can’t pee without help. She can’t dress herself without help.), and all the extra craziness of blood clots and seizures, and even my dad’s eye surgery, she still wants more time. She wants more time with us. She wants more time with me. She said it very clearly to me: “I’m glad I’ll have more time with you.”
And I’m glad that I’ll have more time with her, too.
Tuesday, October 4, 2011
Surgery
But not for my mom. For my dad. And not on his back. On his left eye.
Surgery number two, actually. Apparently his retina is lifting from where it should be, and it has to be lazered, and injected with some air bubble thing to hold the retina down in place as it heals. He has to keep his head down all day for one day, and then on and off every few hours for a week. He can’t look at a computer screen or read for two weeks, and he can’t drive until the bubble eventually dissipates (which took three weeks last time).
This wouldn’t be such a big deal (he’s had it before, it’s a pretty easy surgery to recover from and I’ve already freaked out about this once the first time it happened, so I don’t have to again, right?) except the whole my mom can’t walk, my mom can’t drive, my mom can’t cook, and she can only kinda talk. You know, the usual. And as if he wasn’t in enough pain (exacerbated by standing up a lot to help my mom with things), the whole putting-your-head-down-and-thus-not-putting-your-leg-up thing certainly doesn’t help his back feel any better.
His surgery is happening on Thursday morning. Let’s hope this one sticks, and fixes everything that the last one missed (and anything that the next one might catch). They almost did it today when he went in to get his eye checked. But now he has time to find rides – for him to the doctor’s for the surgery, for him and mom for different doctors appointments throughout the next few weeks. And of course I’ll be on duty if they need anything, even though it takes me 45 minutes to get there.
But yah, so it would be nice if all this stopped. The hospitals, the surgeries. I’d really like this to stop, if that’s okay. I don’t know how much more we can take right now.
Surgery number two, actually. Apparently his retina is lifting from where it should be, and it has to be lazered, and injected with some air bubble thing to hold the retina down in place as it heals. He has to keep his head down all day for one day, and then on and off every few hours for a week. He can’t look at a computer screen or read for two weeks, and he can’t drive until the bubble eventually dissipates (which took three weeks last time).
This wouldn’t be such a big deal (he’s had it before, it’s a pretty easy surgery to recover from and I’ve already freaked out about this once the first time it happened, so I don’t have to again, right?) except the whole my mom can’t walk, my mom can’t drive, my mom can’t cook, and she can only kinda talk. You know, the usual. And as if he wasn’t in enough pain (exacerbated by standing up a lot to help my mom with things), the whole putting-your-head-down-and-thus-not-putting-your-leg-up thing certainly doesn’t help his back feel any better.
His surgery is happening on Thursday morning. Let’s hope this one sticks, and fixes everything that the last one missed (and anything that the next one might catch). They almost did it today when he went in to get his eye checked. But now he has time to find rides – for him to the doctor’s for the surgery, for him and mom for different doctors appointments throughout the next few weeks. And of course I’ll be on duty if they need anything, even though it takes me 45 minutes to get there.
But yah, so it would be nice if all this stopped. The hospitals, the surgeries. I’d really like this to stop, if that’s okay. I don’t know how much more we can take right now.
Monday, October 3, 2011
Standing!
My mom stood today for the first time since the stroke. She stood for about two minutes, which is amazing.
She can also move her toes and her ankle on her right foot, and can sometimes move her right wrist. Go mom go!
Also, this picture came from my dad. He texted it to me. Isn't he fancy?
Also, this picture came from my dad. He texted it to me. Isn't he fancy?
Sunflowers
Even though it's now officially fall, and is finally starting to feel like fall, I have one thing to say:
I love sunflowers. The bring sunshine to any room, and make me smile. So here's to sunshine all year round.
I love sunflowers. The bring sunshine to any room, and make me smile. So here's to sunshine all year round.
Sunday, October 2, 2011
Choices
This weekend, I chose to stay in Oakland and have fun instead of going to visit my mom for the weekend. Not that hanging out with my mom isn’t fun – it is. But it’s a different type of fun. This weekend I chose to hang out with friends, and drink good beer, and just do fun, Oakland-y things.
It was a hard decision. And I felt very torn this whole weekend – a part of me wanting to be with my mom, and the other (and overriding part of me) really glad to be staying in Oakland. It was a good decision, and a super fun one, but still hard. It’s hard to choose to care for myself and choose my own enjoyment over caring for my mom.
It was a really fun weekend. (Have you gotten it by now that it was a really fun weekend? Can I say fun a few more times in this post?). On Friday I chilled with friends. On Saturday I went with a friend to Oaktoberfest, and tried tasty homebrews and local beers, watched some street dancers, listened to some Zydeco music, and ate some brats. And people watched – I saw so many different faces of Oakland all in one place. And then Reuben sandwiches and pumpkin pie back at home with roomies and friends.
I’m glad I decided to stay in Oakland. I really had a super fun weekend. (Thanks friends who made it so fun!) I think I needed the break, and I needed the chance to just chill with friends. And I still got to hang out with my mom today for a few hours.
It was a hard decision. And I felt very torn this whole weekend – a part of me wanting to be with my mom, and the other (and overriding part of me) really glad to be staying in Oakland. It was a good decision, and a super fun one, but still hard. It’s hard to choose to care for myself and choose my own enjoyment over caring for my mom.
It was a really fun weekend. (Have you gotten it by now that it was a really fun weekend? Can I say fun a few more times in this post?). On Friday I chilled with friends. On Saturday I went with a friend to Oaktoberfest, and tried tasty homebrews and local beers, watched some street dancers, listened to some Zydeco music, and ate some brats. And people watched – I saw so many different faces of Oakland all in one place. And then Reuben sandwiches and pumpkin pie back at home with roomies and friends.
I’m glad I decided to stay in Oakland. I really had a super fun weekend. (Thanks friends who made it so fun!) I think I needed the break, and I needed the chance to just chill with friends. And I still got to hang out with my mom today for a few hours.
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