We are in the hospital for another 4 day stint. This time, we are in a "corner" room.
Walking the halls, I had seen these rooms, or at least the outside door of one. What was inside? I wondered. A larger room? A better layout?
I was curious (I am eternally curious and hope that the thing about curiosity and the cat is just hyperbole), but never once did I actively wish to be in one of these mysterious rooms. I was too afraid that they were reserved for the dire cases, the ones who ... well, you know.
Well.
What I thought was the door to the room is actually a door to a kind of closet/storage thing that the nurses go into many times a day to get supplies. You go in, and then there's another door, and that leads into our room. So ... I now have twice as many doors to navigate through with a 3 year old and an iv pole.
Clock on the wall ... 5 hours fast.
Trash can that is inside a cabinet -- normally, it rolls, and has a big handle in front, so that you can pull it out, step on a pedal, and it opens. Sanitary.
No wheels. No handle. Must open it the 1 inch it will raise while under the cabinet, grab the side and scrape/drag it out of the cabinet. Not sanitary.
I know, wah, wah. Whine, whine.
Bathroom.
Layout is different, so that the toilet is on the back wall, rather than by the door. In order to take LW in to use the bathroom (which is approx every half hour, because they flush her kidneys with fluid the whole time we're here), I must unplug her iv pole from the wall, put a neutral plug in her monitor input plug so alarms don't sound, pull it around the bathroom door, open the bathroom door, lift it over the doorway, get her clothes down and her on the toilet (actually, over the "hat" in toilet, because they measure her output), get her off the toilet, clothes back up, "walk to the bed, LW!", lift the iv over the doorway threshold, lift her back onto the bed, plug everything back in.
Round about that time, she needs to go again. Just kidding. Barely.
Right now, it's just annoying, all the plugging and lifting of Mr. IV pole. But I'm willing to bet at 2:30 in the morning ...
So, my point and I do have one, is that sometimes, the magic corner room is actually the overflow room, the one they use when everything else is full up, the one where broken equipment goes and bad layout lives.
I imagine there's a moral in that, but I'll have to think about it later. Right now, LW needs to pee.
Thursday, July 31, 2008
Only a UU!!!
Only a Unitarian Universalist could go through something like Knoxville Sunday and change their mind against the death penalty.
Okay, maybe others could. But that was the first thing that popped into my mind. That, and,
"I'm so proud to be a UU."
Okay, maybe others could. But that was the first thing that popped into my mind. That, and,
"I'm so proud to be a UU."
Wednesday, July 30, 2008
Life in the Comments Section
I have been spending an inordinate amount of time online in the comments sections of several newspapers this week.
Packing for yet another hospital visit, I am effectively housebound. I can't plan a service, attend a vigil, lead a forum.
But I can visit comments.
"Not worth it," is something we frequently say in my house, when referring to a benefit, or a lesson learned, that sprang from Little Warrior's cancer. Not worth it, but Unitarian Universalism has gotten more nationwide press this week than in ... how long?
Articles have been written, both about the horror of someone killing us for our beliefs, and the heroism of those attacked.
At the end of many of these articles were comments sections. Much of what was written were comments of sympathy. Occasionally, there would be a comment critical of our religion. And here and there, one could find a comment that said, "I don't really know anything about this church."
It was because of the latter that I did something very new to me. I registered as a user, and I began commenting. I explained our religion. I refuted some of the claims made by those who don't know us. And I kept running into other UU's, doing the same thing.
For so long, we have been defined by others. I wanted to do my bit to straighten out any misunderstandings.
I rarely got into arguments. I greatly admire those UU's who do. If you want to see great examples of this, read Rev. Matt Tittle's newspaper blog. Every week, he politely, firmly, addresses misconceptions, arguments, and even nastiness about our religion.
I don't have the emotional energy for that right now. So a big thank you to the UU's who do that work.
It is work. To be metaphorically screamed at, have bible verses thrown at you, over and over, is wearing.
So why do it?
Because there's an invisible audience for these discussions. Every once in a while, they speak. This week, I have seen at least 10 comments that said, in one form or another, "I didn't know anything about Unitarian Universalism. But these folks sound like me. I think I'm going to check them out."
I will not be surprised if we have an upswing in visitors during the next month. Because the killer didn't write that he hated Unitarians. He wrote that he hated liberals. And there's a lot of people beyond our doors who identify as such. And they felt attacked too.
And it's not just their imagination. The comments sections that I was visiting were from mainstream newspapers. Things were apparently even more hateful elsewhere:
Right Wing Weighs In On Shooter
More on this topic later ...
Packing for yet another hospital visit, I am effectively housebound. I can't plan a service, attend a vigil, lead a forum.
But I can visit comments.
"Not worth it," is something we frequently say in my house, when referring to a benefit, or a lesson learned, that sprang from Little Warrior's cancer. Not worth it, but Unitarian Universalism has gotten more nationwide press this week than in ... how long?
Articles have been written, both about the horror of someone killing us for our beliefs, and the heroism of those attacked.
At the end of many of these articles were comments sections. Much of what was written were comments of sympathy. Occasionally, there would be a comment critical of our religion. And here and there, one could find a comment that said, "I don't really know anything about this church."
It was because of the latter that I did something very new to me. I registered as a user, and I began commenting. I explained our religion. I refuted some of the claims made by those who don't know us. And I kept running into other UU's, doing the same thing.
For so long, we have been defined by others. I wanted to do my bit to straighten out any misunderstandings.
I rarely got into arguments. I greatly admire those UU's who do. If you want to see great examples of this, read Rev. Matt Tittle's newspaper blog. Every week, he politely, firmly, addresses misconceptions, arguments, and even nastiness about our religion.
I don't have the emotional energy for that right now. So a big thank you to the UU's who do that work.
It is work. To be metaphorically screamed at, have bible verses thrown at you, over and over, is wearing.
So why do it?
Because there's an invisible audience for these discussions. Every once in a while, they speak. This week, I have seen at least 10 comments that said, in one form or another, "I didn't know anything about Unitarian Universalism. But these folks sound like me. I think I'm going to check them out."
I will not be surprised if we have an upswing in visitors during the next month. Because the killer didn't write that he hated Unitarians. He wrote that he hated liberals. And there's a lot of people beyond our doors who identify as such. And they felt attacked too.
And it's not just their imagination. The comments sections that I was visiting were from mainstream newspapers. Things were apparently even more hateful elsewhere:
Right Wing Weighs In On Shooter
More on this topic later ...
Tuesday, July 29, 2008
So many words in my head, none of them my own
But all words that I have taken into myself; they have become a part of me.
Where there is hate, let us bring love;
Where there is sorrow, joy.
Let us strive more to comfort than to be comforted,
To understand others than to be understood;
To love others than to be loved.
Come, come, whoever you are
Wanderer, worshipper, lover of leaving
Ours is no caravan of despair
There is more love, somewhere
I'm going to keep on, til I find it,
There is more love, somewhere
Spirit of Life
Come unto me
Sing in my heart
All the stirrings of compassion.
It will be natural, it will be normal, for us to respond with anger to this terrible event. As we read the newspaper, and learn that this act of violence was because he felt the world would be better with fewer of us in it ... as we read about the right-wing books found in his home ... as we read the comments left under news articles or on blogs that question our very right to call ourself a church, a religion ... the anger will be natural.
Feel it. Accept it. And come back to our heart. Come back to the love that we can -- that we must -- send out into the world.
Where there is hate, let us bring love.
Where there is hate, let us bring love;
Where there is sorrow, joy.
Let us strive more to comfort than to be comforted,
To understand others than to be understood;
To love others than to be loved.
Come, come, whoever you are
Wanderer, worshipper, lover of leaving
Ours is no caravan of despair
There is more love, somewhere
I'm going to keep on, til I find it,
There is more love, somewhere
Spirit of Life
Come unto me
Sing in my heart
All the stirrings of compassion.
It will be natural, it will be normal, for us to respond with anger to this terrible event. As we read the newspaper, and learn that this act of violence was because he felt the world would be better with fewer of us in it ... as we read about the right-wing books found in his home ... as we read the comments left under news articles or on blogs that question our very right to call ourself a church, a religion ... the anger will be natural.
Feel it. Accept it. And come back to our heart. Come back to the love that we can -- that we must -- send out into the world.
Where there is hate, let us bring love.
Monday, July 28, 2008
Spotlight on Unitarian Universalism
Well, we've wanted more press, but it is heartwrenching that it is coming through this tragedy. Articles are being written, and comments sections are exploding, such as this one:
What Unitarian Universalists Stand For
He'p me out, folks. There's education to be done.
What Unitarian Universalists Stand For
He'p me out, folks. There's education to be done.
Sunday, July 27, 2008
Cradle for my guitar
Every 7th Day posted Tim's comment about the gunman carrying his weapon in a guitar case. It was somehow comforting to know that someone else reacted to that detail as I did.
Guitar cases are as common as hymnals in many Unitarian Universalist churches. Thinking of my own guitar, its own case, just gave me a visceral pain, thinking of someone using one to sneak in a gun. It is the cradle for my guitar, its protection. It is the handle so that I can carry my guitar with me ... to parties, to UU summer events, to church, and now, to the hospital. It is homely and it is also holy.
Walking into a UU church, whether its my own, or a church where I'm the speaker that Sunday, seeing a guitar case always gives me a lift. It's like spying the dessert table in a buffet. Anticipation. Something good is coming.
To now have to look at a guitar case with fear ... I can't stand it.
Guitar cases are as common as hymnals in many Unitarian Universalist churches. Thinking of my own guitar, its own case, just gave me a visceral pain, thinking of someone using one to sneak in a gun. It is the cradle for my guitar, its protection. It is the handle so that I can carry my guitar with me ... to parties, to UU summer events, to church, and now, to the hospital. It is homely and it is also holy.
Walking into a UU church, whether its my own, or a church where I'm the speaker that Sunday, seeing a guitar case always gives me a lift. It's like spying the dessert table in a buffet. Anticipation. Something good is coming.
To now have to look at a guitar case with fear ... I can't stand it.
"Mom, another person there died,"
reported The Boy, watching CNN.
He and I are huddled together, watching. We don't understand. We don't understand how someone can walk into one of our UU churches and begin shooting.
This ... is a gentle religion. We sing that we are standing on the side of love.
There are no answers right now. How often first news can be wrong news, I remind myself. But I can't help connecting the dots ... they say he wasn't mentally ill. They say he walked in, wearing a red, white, and blue shirt and shouting hateful things. They say he had been planning this, that acquaintances had seen him practicing on targets.
While I've been practicing meditation, he was practicing shooting humans.
I spoke with my mom. She said she had been sitting there, wondering what she could say to me, to convince me not to go into ministry.
She did give a little laugh and agree with me that if she were really worried about my safety, she should try to convince me to not drive down to the medical center every week, statistics about car wrecks and all.
We do what we do. We get up, and drive our cars, and go to work, or to the store, or to school.
Or to church.
They say that the first congregant to die, Greg McKendry, tried to shield others. "I want to punch you," I tell The Husband. He raises his eyebrows. "Because, you would do that. You would die, trying to save others in our church." He nods. He would. He raises his eyebrows again, cocking his head in a challenging way. Yes, I sigh. I hope that I would, too.
I instantly think of many in our church, who would put themselves between a gun and the rest of the church. I'm sure you have those in your church, too.
We are a gentle angry people
And we are singing, singing for our lives.
He and I are huddled together, watching. We don't understand. We don't understand how someone can walk into one of our UU churches and begin shooting.
This ... is a gentle religion. We sing that we are standing on the side of love.
There are no answers right now. How often first news can be wrong news, I remind myself. But I can't help connecting the dots ... they say he wasn't mentally ill. They say he walked in, wearing a red, white, and blue shirt and shouting hateful things. They say he had been planning this, that acquaintances had seen him practicing on targets.
While I've been practicing meditation, he was practicing shooting humans.
I spoke with my mom. She said she had been sitting there, wondering what she could say to me, to convince me not to go into ministry.
She did give a little laugh and agree with me that if she were really worried about my safety, she should try to convince me to not drive down to the medical center every week, statistics about car wrecks and all.
We do what we do. We get up, and drive our cars, and go to work, or to the store, or to school.
Or to church.
They say that the first congregant to die, Greg McKendry, tried to shield others. "I want to punch you," I tell The Husband. He raises his eyebrows. "Because, you would do that. You would die, trying to save others in our church." He nods. He would. He raises his eyebrows again, cocking his head in a challenging way. Yes, I sigh. I hope that I would, too.
I instantly think of many in our church, who would put themselves between a gun and the rest of the church. I'm sure you have those in your church, too.
We are a gentle angry people
And we are singing, singing for our lives.
Saturday, July 26, 2008
Shaking it off ... gimme music!
Okay, so recently we talked about songs that make us sad ... for the luv of all that's good, talk to me about the ones that make you happy!
Music really is a magic bullet for me. I remember when I was in college, having a stressful time. For some reason, I thought of the song Pop Musik. If I could just hear that song, I thought wistfully, everything would be better.
This was before iTunes, guys. Before the Internet, and right as CDs were becoming prominent. Like most of my schoolmates, I carted several plastic boxes of cassettes to college.
I rummaged through them. There! There it was! A homemade mix tape, from a junior high boyfriend, no less. And Pop Musik, taped from the radio.
I eagerly jammed it into my dual-tape boombox and impatiently fast forwarded. Not there, not there ... THERE!
I played it. And instantly, instantly felt better. Things were going to be okay. And they were.
So ... what about you? What are the songs that put a foolish grin on your face? Show me yours, I'll show you mine.
Like:
Ravel's Bolero ... because my usually private and prudish parents intimated that it was "dangerous" for Mom to hear. Tee-hee.
Jackson, done by June Carter and Johnny Cash. Don't they sound like they're having fun?
Jesus Loves Me (But He Can't Stand You) by the Austin Lounge Lizards. It's not sacrilegious. It's making fun of those who think they, and they only, have the hotline to God. I'm raising my kids in a righteous way. So don't be sending your kids over to my house to play. Yours'll grow up stoned, left-leaning, and gay ...
Institutionalized, Suicidal Tendencies: All I wanted was a Pepsi!!!! Bwahahahaha!
Happy Together. Done by the Turtles, or a punk version, doesn't matter. I love it in every permutation.
Music really is a magic bullet for me. I remember when I was in college, having a stressful time. For some reason, I thought of the song Pop Musik. If I could just hear that song, I thought wistfully, everything would be better.
This was before iTunes, guys. Before the Internet, and right as CDs were becoming prominent. Like most of my schoolmates, I carted several plastic boxes of cassettes to college.
I rummaged through them. There! There it was! A homemade mix tape, from a junior high boyfriend, no less. And Pop Musik, taped from the radio.
I eagerly jammed it into my dual-tape boombox and impatiently fast forwarded. Not there, not there ... THERE!
I played it. And instantly, instantly felt better. Things were going to be okay. And they were.
So ... what about you? What are the songs that put a foolish grin on your face? Show me yours, I'll show you mine.
Like:
Ravel's Bolero ... because my usually private and prudish parents intimated that it was "dangerous" for Mom to hear. Tee-hee.
Jackson, done by June Carter and Johnny Cash. Don't they sound like they're having fun?
Jesus Loves Me (But He Can't Stand You) by the Austin Lounge Lizards. It's not sacrilegious. It's making fun of those who think they, and they only, have the hotline to God. I'm raising my kids in a righteous way. So don't be sending your kids over to my house to play. Yours'll grow up stoned, left-leaning, and gay ...
Institutionalized, Suicidal Tendencies: All I wanted was a Pepsi!!!! Bwahahahaha!
Happy Together. Done by the Turtles, or a punk version, doesn't matter. I love it in every permutation.
Just skip this post. It's depressing.
Another hard week in Wilms' world.
LW had a full week, but nothing bad. Met with the dentist Wed, followup appt with radiation on Thursday at one hospital, ran back to our regular hospital after that for chemo. Literally ran back. Couldn't get parking at the radiation hospital, so we parked at regular hospital, ran to radiation hospital, had appointment, ran back to regular hospital. Personally, I think that should have been worth triple the calorie points, but no one asked me.
Wound up going in for surgery Friday. Not literal surgery -- just dental work, but between being 3 years old and the inherent dangers in a cancer kid having dental work performed, it's all done in the OR under anesthesia.
Busy, but nothing bad.
Not so for several cancer friends of ours. One, a beautiful, spunky teen, registered with hospice ... "just in case." Another beautiful young woman, now in college after having gone through a relapse, stem cell transplant and more ... relapsed again. Her doctor is not hopeful.
And another has gone home. For what is probably the last time.
This is the "good cancer." The cancer that "if you have to have cancer, this is the one to have."
It is hard, at times like this, to be hopeful. I know, logically, that our chances are very good. Statistics and all that.
But times like this, it seems like the biggest fantasy, the craziest miracle, to believe that your child will be one who survives. Not when you see beautiful, sweet children, smart kids, who don't.
When you enter Cancer World, one of the first things you'll be told by an oncologist is this: Statistics don't mean anything. Either your child survives, or she doesn't. Period.
Too many don't.
But still ... I take a deep breath and choose Hope. Because the two young women ... they are both spirited, emotionally strong, and describe themselves as fighters. Some of those with cancer, whose chances seem so low, wind up beating this beast. So why not them.
And Little Warrior ... right now, she's watching Tigger and Pooh. And earlier, she was singing "Brown Eyed Girl" with me. Sha la la la la la la ti da, la tee da.
So why not her.
LW had a full week, but nothing bad. Met with the dentist Wed, followup appt with radiation on Thursday at one hospital, ran back to our regular hospital after that for chemo. Literally ran back. Couldn't get parking at the radiation hospital, so we parked at regular hospital, ran to radiation hospital, had appointment, ran back to regular hospital. Personally, I think that should have been worth triple the calorie points, but no one asked me.
Wound up going in for surgery Friday. Not literal surgery -- just dental work, but between being 3 years old and the inherent dangers in a cancer kid having dental work performed, it's all done in the OR under anesthesia.
Busy, but nothing bad.
Not so for several cancer friends of ours. One, a beautiful, spunky teen, registered with hospice ... "just in case." Another beautiful young woman, now in college after having gone through a relapse, stem cell transplant and more ... relapsed again. Her doctor is not hopeful.
And another has gone home. For what is probably the last time.
This is the "good cancer." The cancer that "if you have to have cancer, this is the one to have."
It is hard, at times like this, to be hopeful. I know, logically, that our chances are very good. Statistics and all that.
But times like this, it seems like the biggest fantasy, the craziest miracle, to believe that your child will be one who survives. Not when you see beautiful, sweet children, smart kids, who don't.
When you enter Cancer World, one of the first things you'll be told by an oncologist is this: Statistics don't mean anything. Either your child survives, or she doesn't. Period.
Too many don't.
But still ... I take a deep breath and choose Hope. Because the two young women ... they are both spirited, emotionally strong, and describe themselves as fighters. Some of those with cancer, whose chances seem so low, wind up beating this beast. So why not them.
And Little Warrior ... right now, she's watching Tigger and Pooh. And earlier, she was singing "Brown Eyed Girl" with me. Sha la la la la la la ti da, la tee da.
So why not her.
Wednesday, July 23, 2008
Got fresh strawberries? Make these cupcakes!
Well, Little Warrior and I are getting pretty addicted to taking cupcakes every week to clinic. My thighs, however, registered a complaint. No problem ... make cupcakes in a flavor I don't like; in this case, fresh strawberries.
I used this recipe for Sprinkles Strawberry Cupcakes, using fresh strawberries for both the cake and frosting.
The Husband practically swooned, and he's not that much of a cake person.
So, tomorrow we take 4 dozen fresh strawberry cupcakes to clinic.
And my thighs sent me a thank-you note.
I used this recipe for Sprinkles Strawberry Cupcakes, using fresh strawberries for both the cake and frosting.
The Husband practically swooned, and he's not that much of a cake person.
So, tomorrow we take 4 dozen fresh strawberry cupcakes to clinic.
And my thighs sent me a thank-you note.
Tuesday, July 22, 2008
Truth
I have been mentally writing this post for a while now, unwilling though to sit down and type the words.
Truth has been a very straightforward concept for me for quite some time, and I have put its importance at the top of the list. Friends know that if I don't want truth, I will bluntly say so -- "Tell me this skirt doesn't make me look like a cow." Otherwise, gimme the truth. And I will give it to you.
But in some certain arenas, my opinion about truth is a bit more fluid.
My father tells of the time he had his tonsils out, as an adult. The regular recovery floor was full and so, ironically since he couldn't talk, he was put in a ward with men who had had eye surgery and couldn't see.
Each of them was bandaged up, completely blind. One morning, an janitor came through, cleaning floors and such. One of the men asked him, "Hey, what's it like outside?"
The janitor said cheerfully, "It is a bright and beautiful day, gentleman. Flowers are blooming and birds singing."
My dad stared, speechless both by surgery and by what the man was saying. Was he crazy? It was rainy and grey outside. Completely miserable!
The janitor went on, "Here comes a young mama walking down the street, pushing a baby carriage. Ooh-eee, she is switching her hips side to side, just sashaying. What a pretty sight."
My father moved his eyes from out the window and onto the faces of his fellow patients. They were all smiling, their faces lit up. Nodding. They could just see it.
---
What happens after we die?
The Boy asked me that, a few years ago. Actually, born UU that he is, I believe he phrased it as, "What do you think happens after we die?"
And he and I talked about different theories and agreed that neither of us had a strong belief one way or another.
The Princess and I have also had a few of these conversations. Never been a very pressing thing, more just interesting discussion. They've enjoyed stretching their minds to come up with all kinds of ideas.
And we always came back to a good-natured, "I dunno," followed by a smile and a laugh.
Life changes.
If I knew that LW was going to leave us, as a child ... if she and I were talking about the end, would I give her that kind of answer?
No. I can't. Between developmental stages, wanting to give her something good to hold on to ... and wanting to give myself something something to hold onto, I would not go with vague answers.
We would talk about heaven. And seeing each other again.
I'm getting some picture books. About heaven. So that she and I can talk about what heaven is like.
Maybe when she's 6 or 7 ... or when she hits 5 years off treatment ... we can talk about whether it exists.
Truth has been a very straightforward concept for me for quite some time, and I have put its importance at the top of the list. Friends know that if I don't want truth, I will bluntly say so -- "Tell me this skirt doesn't make me look like a cow." Otherwise, gimme the truth. And I will give it to you.
But in some certain arenas, my opinion about truth is a bit more fluid.
My father tells of the time he had his tonsils out, as an adult. The regular recovery floor was full and so, ironically since he couldn't talk, he was put in a ward with men who had had eye surgery and couldn't see.
Each of them was bandaged up, completely blind. One morning, an janitor came through, cleaning floors and such. One of the men asked him, "Hey, what's it like outside?"
The janitor said cheerfully, "It is a bright and beautiful day, gentleman. Flowers are blooming and birds singing."
My dad stared, speechless both by surgery and by what the man was saying. Was he crazy? It was rainy and grey outside. Completely miserable!
The janitor went on, "Here comes a young mama walking down the street, pushing a baby carriage. Ooh-eee, she is switching her hips side to side, just sashaying. What a pretty sight."
My father moved his eyes from out the window and onto the faces of his fellow patients. They were all smiling, their faces lit up. Nodding. They could just see it.
---
What happens after we die?
The Boy asked me that, a few years ago. Actually, born UU that he is, I believe he phrased it as, "What do you think happens after we die?"
And he and I talked about different theories and agreed that neither of us had a strong belief one way or another.
The Princess and I have also had a few of these conversations. Never been a very pressing thing, more just interesting discussion. They've enjoyed stretching their minds to come up with all kinds of ideas.
And we always came back to a good-natured, "I dunno," followed by a smile and a laugh.
Life changes.
If I knew that LW was going to leave us, as a child ... if she and I were talking about the end, would I give her that kind of answer?
No. I can't. Between developmental stages, wanting to give her something good to hold on to ... and wanting to give myself something something to hold onto, I would not go with vague answers.
We would talk about heaven. And seeing each other again.
I'm getting some picture books. About heaven. So that she and I can talk about what heaven is like.
Maybe when she's 6 or 7 ... or when she hits 5 years off treatment ... we can talk about whether it exists.
Sunday, July 20, 2008
Limitless Undying Love
So, LE, how are you getting through all this?
Red wine helps.
No need to schedule the intervention ... yet. Truth is, there are other things that help more, not to denigrate the red wine, which has its place, especially a good Malbec.
The hysteric cleric asked me how I was "feeding" myself. Well, in general, I'm staying away from Niebuhr and even Spong. Anything deeper than Huffington Post isn't getting a lot of my attention. No offense to HuffPo. So much for the summer reading list I'd been making for myself before All of This, The Sequel.
I'm playing my guitar a lot. The internet means that you can find basic chords for just about any song (except Good Times, which I guess I'll have to find the sheets for), so I've been having fun playing old and new stuff.
Something about playing and singing a song means that you get more intimate with it than just listening. I've always enjoyed the Beatles' Across the Universe, but somehow I never stopped on the significance of one phrase from the song:
Limitless undying love which shines around me like a million suns
It calls me on and on across the universe
Limitless undying love.
Limitless undying love.
Right now, at this moment, that's as good a definition of God as I know.
Red wine helps.
No need to schedule the intervention ... yet. Truth is, there are other things that help more, not to denigrate the red wine, which has its place, especially a good Malbec.
The hysteric cleric asked me how I was "feeding" myself. Well, in general, I'm staying away from Niebuhr and even Spong. Anything deeper than Huffington Post isn't getting a lot of my attention. No offense to HuffPo. So much for the summer reading list I'd been making for myself before All of This, The Sequel.
I'm playing my guitar a lot. The internet means that you can find basic chords for just about any song (except Good Times, which I guess I'll have to find the sheets for), so I've been having fun playing old and new stuff.
Something about playing and singing a song means that you get more intimate with it than just listening. I've always enjoyed the Beatles' Across the Universe, but somehow I never stopped on the significance of one phrase from the song:
Limitless undying love which shines around me like a million suns
It calls me on and on across the universe
Limitless undying love.
Limitless undying love.
Right now, at this moment, that's as good a definition of God as I know.
Saturday, July 19, 2008
I feel lost.
I went to see Mamma Mia tonight with a bunch of my girlfriends. Good, good, good, all the way around. Ignore any bad reviews. It's a fun romp. Yeah, Brosnan can't sing, but that's just part of the fun. More to laugh at.
But I couldn't quite lose myself. I would escape for a moment and then think, I have to go back to that world.
It's not that I don't want to be at home, or even at the hospital, with Little Warrior. Really, truly. If she has to go through it, then I want to be with her.
If she has to go through it ... I don't want her going through it, plain and simple. When she went in for this last surgery, to examine the "spots" that we desperately hoped would not be what they were, after watching her go back to the OR, I walked to the food court area. On the way, I passed a young bald girl, pushing an IV. And I nearly fell down, thinking, "Please please please ... I don't want to go back to that world. I don't want to go back to cancer world. Let her be okay."
I'm back, and now it's all so normal that as I said to the BFF-DRE, kids with hair look a little strange to me.
I talked recently with other cancer parents about "chemo eyes." I don't know what causes it, but occasionally LW gets HUGE eyes. Cancer eyes. It's not just the dark circles under her eyes. Her eye color changes; they get darker and bigger. Other parents knew what I was talking about and agreed.
I feel like I have cancer eyes, too, but mine aren't dark and big. My eyes droop, they just feel so heavy. "Heavy with unshed tears" would be a quite poetic line, but I'm shedding plenty of tears. Plenty.
Mamma Mia is a romp, but I almost lost it, once. Meryl Streep sings Slipping Through My Fingers, a song about watching your daughter grow up so fast. Of course, I couldn't help by have a different interpretation ...
I have to sit down for a while
The feeling that I'm losing her forever...
Slipping through my fingers all the time
I try to capture every minute
The feeling in it
It's so so heavy. Looking at this sprite, because with her fine floss of hair, big eyes and impish grin, she looks like she should have wings on her back and be creeping around your garden in the early morning ... looking at her, getting smaller, I can't help the snake that enters my body and winds itself around my heart.
And if I'm going to be really, really self-focused (but I promised myself that I would be honest on this blog, which includes the bad and the ugly), I have to admit that there was also a bit of me sad at the movie because as Meryl Streep dances around, I know I can't dance right now. The free spirit, dancing, somewhat crazy hippie girl ... she doesn't live here anymore.
You'll be dancing once again and the pain will end
Maybe. I hope. Right now, it seems a million miles from here. It feels the heaviness won't ever end. And heavier still, I realize this might be the good times.
It might get worse.
I went to see Mamma Mia tonight with a bunch of my girlfriends. Good, good, good, all the way around. Ignore any bad reviews. It's a fun romp. Yeah, Brosnan can't sing, but that's just part of the fun. More to laugh at.
But I couldn't quite lose myself. I would escape for a moment and then think, I have to go back to that world.
It's not that I don't want to be at home, or even at the hospital, with Little Warrior. Really, truly. If she has to go through it, then I want to be with her.
If she has to go through it ... I don't want her going through it, plain and simple. When she went in for this last surgery, to examine the "spots" that we desperately hoped would not be what they were, after watching her go back to the OR, I walked to the food court area. On the way, I passed a young bald girl, pushing an IV. And I nearly fell down, thinking, "Please please please ... I don't want to go back to that world. I don't want to go back to cancer world. Let her be okay."
I'm back, and now it's all so normal that as I said to the BFF-DRE, kids with hair look a little strange to me.
I talked recently with other cancer parents about "chemo eyes." I don't know what causes it, but occasionally LW gets HUGE eyes. Cancer eyes. It's not just the dark circles under her eyes. Her eye color changes; they get darker and bigger. Other parents knew what I was talking about and agreed.
I feel like I have cancer eyes, too, but mine aren't dark and big. My eyes droop, they just feel so heavy. "Heavy with unshed tears" would be a quite poetic line, but I'm shedding plenty of tears. Plenty.
Mamma Mia is a romp, but I almost lost it, once. Meryl Streep sings Slipping Through My Fingers, a song about watching your daughter grow up so fast. Of course, I couldn't help by have a different interpretation ...
I have to sit down for a while
The feeling that I'm losing her forever...
Slipping through my fingers all the time
I try to capture every minute
The feeling in it
It's so so heavy. Looking at this sprite, because with her fine floss of hair, big eyes and impish grin, she looks like she should have wings on her back and be creeping around your garden in the early morning ... looking at her, getting smaller, I can't help the snake that enters my body and winds itself around my heart.
And if I'm going to be really, really self-focused (but I promised myself that I would be honest on this blog, which includes the bad and the ugly), I have to admit that there was also a bit of me sad at the movie because as Meryl Streep dances around, I know I can't dance right now. The free spirit, dancing, somewhat crazy hippie girl ... she doesn't live here anymore.
You'll be dancing once again and the pain will end
Maybe. I hope. Right now, it seems a million miles from here. It feels the heaviness won't ever end. And heavier still, I realize this might be the good times.
It might get worse.
Thursday, July 17, 2008
Conquer Childhood Cancer Act Passes Senate!
From Curesearch:
CureSearch Praises Passage of Landmark
"Conquer Childhood Cancer Act"
by Unanimous Consent in the United States Senate
Children with Cancer and Their Families to Benefit from Legislation
July 17, 2008 (Bethesda, MD) - CureSearch National Childhood Cancer Foundation salutes the United States Senate for its passage of the Conquer Childhood Cancer Act, which promises to significantly increase federal investment into childhood cancer research.
The bill, first introduced in the Senate by Senators Jack Reed (D-RI) and Norm Coleman (R-MN), passed by unanimous consent, echoing a similar 416-0 vote June 12th in the U.S. House of Representatives. Senator Ron Wyden (D-OR) requested, and received, this unanimous consent on the Senate floor.
The bill authorizes $30 million annually over five years, providing funding for collaborative pediatric cancer clinical trials research, to create a population-based national childhood cancer database, and to further improve public awareness and communication regarding available treatment and research for children with cancer and their families.
"Too many young people's lives were cut short by cancer, but their hopes were not," said Reed. "We have made great advances in treating cancer, but there is still much more to be done. The Conquer Childhood Cancer Act will deliver much needed hope and support to children and families battling cancer and more resources for vital pediatric cancer research programs."
Senator Coleman, an original sponsor, noted that the legislation passed unanimously in both Houses of Congress, and lauded the overwhelming bi-partisan support of the measure, which addresses a critical national health issue that is finally receiving the attention it deserves.
"Passage of the Conquer Childhood Cancer Act in the Senate is a monumental step in the fight against childhood cancer," said Coleman. "I am proud that my colleagues were able to come together and pass legislation that will provide the resources to not only support children and families with childhood cancer, but also find a cure."
CureSearch supports the life-saving research of the Children's Oncology Group, the world's premier cancer research collaborative. Treating 90 percent of children with cancer, the Children's Oncology Group includes more than 5,000 experts in childhood cancer research and treatment, located at more than 200 leading children's and university hospitals across North America.
"The Conquer Childhood Cancer Act allows for translation of the very best research discoveries into clinical evaluation and practice, in order to improve the cure rates for all children with cancer," stated Gregory Reaman, MD, Chair of the Children's Oncology Group.
"On behalf of my colleagues in the Children's Oncology Group and the children with cancer and their families who are our partners in clinical research, we thank our leaders in the Senate. Only research cures childhood cancer."
"We applaud the leadership of Senators Reed and Coleman and their colleagues in the Senate who through the passage of this bill have made finding the cure for childhood cancer an urgent national priority. Together with their colleagues in the House, Congress has given childhood cancer the attention and support that is long overdue and much needed," said Stacy Pagos Haller, Executive Director of CureSearch.
Having passed both the House of Representatives and the Senate unanimously, the bill now heads to the White House, where President Bush is expected to sign it into law.
--
To everyone who made a call, sent a fax, wrote a letter ... Little Warrior and I thank you. If we could, we'd give you a cupcake.
Wednesday, July 16, 2008
Music that hurts too much
After addressing movies, Peacebang is now tackling music ... specifically, music that renders you wet and soggy, unable to hold the tears back.
Mine are -- mostly -- situation based. But man, they kill me. I can't hear them without tearing up.
Bridge Over Troubled Water. The Sunday after the levees broke in New Orleans, I was scheduled to preach at a church in another town. A town that was taking in Rita-evacuees. A couple of months before that, I had requested that the very talented musicians sing this song.
Oh, Lordy. It was too perfect, too raw, too right. I was completely a mess. Everyone else was, too, though. And a little old lady handed me a wad of toilet paper and whispered that my bra strap was showing. I will always love her.
Sunrise, Sunset. I remember when I was a teen, my mother coming home from a wedding and angrily complaining that it should be against the law for anyone to have that song in a wedding, because it makes all the parents cry. I'm a parent now, and I'm all for that law.
My Beloved Wife, by Natalie Merchant. I can't even read the lyrics without tearing up. My parents have been married 56 years. 'Nuff said.
I'm sorry, why I am thinking about songs that make me cry???
Okay, well, before I stop this insanity, I have to add one last song. The song that instantly was in my head when I read PB's challenge.
Canon, Pachebel. We had a 40 minute CD of Canon, one that I had used when I was pregnant with my first, practicing all those breathing exercises. I copied it to my iPod before Little Warrior's surgery when she was 9 months old ... the surgery that would remove a grapefruit-sized tumor from her right kidney and an orange-sized tumor from her left kidney.
She was in ICU for what felt like a million days, but as I recall, was about 3 or 4. It was so loud and busy in there. Not restful. She looked so pitiful, with about a thousand tubes coming out of her. I had some little speakers that I plugged my iPod into, and we put Canon on a continuous loop. 24 hours a day, for however many days we were there. Mmm ... mmm, mmm, mmmmmm .... Pachebel's Canon. Over and over. She seemed to sleep better.
It's a beautiful piece of music. But two notes in, and I cry. PPTSD. Pachebel's Post Traumatic Stress Disorder.
Mine are -- mostly -- situation based. But man, they kill me. I can't hear them without tearing up.
Bridge Over Troubled Water. The Sunday after the levees broke in New Orleans, I was scheduled to preach at a church in another town. A town that was taking in Rita-evacuees. A couple of months before that, I had requested that the very talented musicians sing this song.
Oh, Lordy. It was too perfect, too raw, too right. I was completely a mess. Everyone else was, too, though. And a little old lady handed me a wad of toilet paper and whispered that my bra strap was showing. I will always love her.
Sunrise, Sunset. I remember when I was a teen, my mother coming home from a wedding and angrily complaining that it should be against the law for anyone to have that song in a wedding, because it makes all the parents cry. I'm a parent now, and I'm all for that law.
My Beloved Wife, by Natalie Merchant. I can't even read the lyrics without tearing up. My parents have been married 56 years. 'Nuff said.
I'm sorry, why I am thinking about songs that make me cry???
Okay, well, before I stop this insanity, I have to add one last song. The song that instantly was in my head when I read PB's challenge.
Canon, Pachebel. We had a 40 minute CD of Canon, one that I had used when I was pregnant with my first, practicing all those breathing exercises. I copied it to my iPod before Little Warrior's surgery when she was 9 months old ... the surgery that would remove a grapefruit-sized tumor from her right kidney and an orange-sized tumor from her left kidney.
She was in ICU for what felt like a million days, but as I recall, was about 3 or 4. It was so loud and busy in there. Not restful. She looked so pitiful, with about a thousand tubes coming out of her. I had some little speakers that I plugged my iPod into, and we put Canon on a continuous loop. 24 hours a day, for however many days we were there. Mmm ... mmm, mmm, mmmmmm .... Pachebel's Canon. Over and over. She seemed to sleep better.
It's a beautiful piece of music. But two notes in, and I cry. PPTSD. Pachebel's Post Traumatic Stress Disorder.
It Made ME feel better.
Driving home from the hospital, I found myself behind a pickup that had three big magnetic signs on the back.
The first said:
Blacks own slaves in Mauritania and Niger.
The second said:
Affirmative Action is Racist.
The third said:
Affirmative Action Lowers Standards.
I hurt inside.
And then ... I slowly, carefully, changed lanes. Got ahead of the pickup. Moved back over, in front of him.
Me and my Obama bumper sticker.
The first said:
Blacks own slaves in Mauritania and Niger.
The second said:
Affirmative Action is Racist.
The third said:
Affirmative Action Lowers Standards.
I hurt inside.
And then ... I slowly, carefully, changed lanes. Got ahead of the pickup. Moved back over, in front of him.
Me and my Obama bumper sticker.
Monday, July 14, 2008
What does love feel like? Sound like?
Because Little Warrior is excreting chemo each time she goes to the bathroom, I have to clean her well with a baby wipe. At 3 in the morning, no matter the old trick of holding the wipe in your hand to warm it, it is still pretty cold. So, I ponied up 20 bucks and got her a wipe warmer. Everytime I pull a wipe from it, she smiles. Ahhh. Nice and warm.
That's what love feels like. A warm baby wipe, because Mama doesn't want you to have a cold tushy.
I have received several phone calls this week from the BFF-DRE. She sounded ... I dunno, kind of echo-ey. "Where are you?"
She was out in the middle of a lake, because she's on vacation and that's the only place she could get cell coverage. She wanted to check on how LW was doing, in the hospital.
And that, my friends, is what love sounds like.
What say you? What does love look like/feel like/sound like/taste like to you?
That's what love feels like. A warm baby wipe, because Mama doesn't want you to have a cold tushy.
I have received several phone calls this week from the BFF-DRE. She sounded ... I dunno, kind of echo-ey. "Where are you?"
She was out in the middle of a lake, because she's on vacation and that's the only place she could get cell coverage. She wanted to check on how LW was doing, in the hospital.
And that, my friends, is what love sounds like.
What say you? What does love look like/feel like/sound like/taste like to you?
Wilms' Tumor -- in 1955
from the diary of a mom
I had to skip over certain parts. Reading this while in the hospital was a bit surreal ... kind of like on a tv show, when everything goes hazy and the person goes back in time. The description of the ward, and the children ... it's very vivid. I had to blink a few times to get back to the present.
I won't say that Little Warrior is lucky to have been born at the time she was. Lucky would have been never to get cancer in the first place.
But definitely less unlucky.
I was touched by how universal and timeless certain feelings are. She writes about how soon after the initial diagnosis, she thinks that perhaps it would be better for her child to die in surgery than to go through the long process of cancer.
I vaguely remember a similar thought immediately after LW was diagnosed. By the time she got surgery, though, that thought had completely disappeared. I was greedy for each day I could get.
And when she was rediagnosed this spring, just after the two year anniversary of her surgery, even in my pain, I thought, well, at least I got two more years.
Must stop now. I am beginning to sink beneath the waves and this isn't the time nor place. And truly, at this moment, a bit ridiculous, as Little Warrior is munching bacon, watching Hannah Montana, and intending on holding me to the promise of a trip to the playroom. Chemo is at noon, so I need to get moving.
I had to skip over certain parts. Reading this while in the hospital was a bit surreal ... kind of like on a tv show, when everything goes hazy and the person goes back in time. The description of the ward, and the children ... it's very vivid. I had to blink a few times to get back to the present.
I won't say that Little Warrior is lucky to have been born at the time she was. Lucky would have been never to get cancer in the first place.
But definitely less unlucky.
I was touched by how universal and timeless certain feelings are. She writes about how soon after the initial diagnosis, she thinks that perhaps it would be better for her child to die in surgery than to go through the long process of cancer.
I vaguely remember a similar thought immediately after LW was diagnosed. By the time she got surgery, though, that thought had completely disappeared. I was greedy for each day I could get.
And when she was rediagnosed this spring, just after the two year anniversary of her surgery, even in my pain, I thought, well, at least I got two more years.
Must stop now. I am beginning to sink beneath the waves and this isn't the time nor place. And truly, at this moment, a bit ridiculous, as Little Warrior is munching bacon, watching Hannah Montana, and intending on holding me to the promise of a trip to the playroom. Chemo is at noon, so I need to get moving.
Sunday, July 13, 2008
A real life visit!
Well, today was a good day. For one thing, between the pre-chemo doses of Benadryl and hydrocortisone, plus changing to Etopophos (Etoposide, but different manufacturer), Little Warrior had no allergic reaction. Since the doctors this morning casually mentioned, "...and we might, then, need to move her to ICU ..." I am feeling much relieved.
While I was nervously eyeing LW for bumps, bites, hives, and anaphylactic shock, I had a most welcome distraction -- a visit from a real, live, Unitarian Universalist minister!
I'd heard that they existed, and even imagined meeting one, one time, myself, in Albuquerque. But looking back, it has taken on a dream-like quality. I chalked that up to eating too much green chile at lunch.
Well, I won't name names, but he was funny, kind, and generous with his thoughts and time. Funny -- a bit hysteric, some would say. Such a nice cleric.
We are in agreement about several things, including the fact that Philocrites is the Kevin Bacon of the UU set. No UU is ever more than 7 degrees away from him at any time.
In addition to being a cool guy, Rev. Visitor gave me a peek into the nurturing community that UU ministers create to support each other. It makes me feel good about the group I wish to someday join forces with.
Is that a little too Jedi?
While I was nervously eyeing LW for bumps, bites, hives, and anaphylactic shock, I had a most welcome distraction -- a visit from a real, live, Unitarian Universalist minister!
I'd heard that they existed, and even imagined meeting one, one time, myself, in Albuquerque. But looking back, it has taken on a dream-like quality. I chalked that up to eating too much green chile at lunch.
Well, I won't name names, but he was funny, kind, and generous with his thoughts and time. Funny -- a bit hysteric, some would say. Such a nice cleric.
We are in agreement about several things, including the fact that Philocrites is the Kevin Bacon of the UU set. No UU is ever more than 7 degrees away from him at any time.
In addition to being a cool guy, Rev. Visitor gave me a peek into the nurturing community that UU ministers create to support each other. It makes me feel good about the group I wish to someday join forces with.
Is that a little too Jedi?
Saturday, July 12, 2008
Sometimes, with this whole cancer thing, I think, "Well, it's a pain in the ass, but it's not this big tragic thing every day. It's not like the commercials for St. Jude's, with sweet sad music in the background, and quivering-lipped smiles. It's just doing what you gotta do to get past this."
But then occasionally, something will happen, like today, that reminds me that this isn't something like psoriasis (sister had it) or pigeon-toes, necessitating leg braces (me), or allergies (brother).
It's cancer. And it's scary. And it's bad.
Right now, she's awake, after her long benadryl-fueled nap. This might be a long night.
She's watching a Lazy Town DVD and licking a Ring Pop from the surprise bag. Doing what tons of other 3 year olds are doing right now. Except she's hooked up to an IV.
Right now, that really pisses me off. Because there's a lot of other things she should be doing. But she's busy.
Fighting cancer.
But then occasionally, something will happen, like today, that reminds me that this isn't something like psoriasis (sister had it) or pigeon-toes, necessitating leg braces (me), or allergies (brother).
It's cancer. And it's scary. And it's bad.
Right now, she's awake, after her long benadryl-fueled nap. This might be a long night.
She's watching a Lazy Town DVD and licking a Ring Pop from the surprise bag. Doing what tons of other 3 year olds are doing right now. Except she's hooked up to an IV.
Right now, that really pisses me off. Because there's a lot of other things she should be doing. But she's busy.
Fighting cancer.
Looking out my window ...
The Princess and Bo Peep have left, their "slumber party" with Little Warrior having been a welcome distraction for her.
A couple of hours after they left with The Husband, LW finished up one of her chemos and suddenly began breaking out in what looked like mosquito bites but, of course, weren't. No breathing problems, but her lips swelled and got a little purply.
Mama doesn't it like it when her chicks change color.
So, an allergic reaction to the chemo, etoposide, which is known to cause such things. No breathing problems, though. Tomorrow, we'll talk to the doctors and decide what to do.
Meanwhile, they hit her with both benadryl and hydrocortisone. She's sleeping now.
We are on a different side of the building than we've been the last couple of times. From here, I can see the other hospital we go to, the one for radiation. (Note to self: schedule followup appointment over there.) It seems strange to me that I can see it. I don't know why. I guess because hermetically sealed in here, it seems like outside isn't real, that it's just a backdrop someone has painted on our windows.
Our hospital has a small playground, and I can see it from here. We've been here since Thursday, and I haven't seen a single child in it. Not one. I thought about getting a pass for LW to go, then thought better of it. She has to stay on IV, and so it would be a "don't do that," "Be careful," "No!" sort of endeavor. I mean, how do you go down a slide with an IV pole?
Buildings, buildings, buildings here and cranes, cranes, cranes. An empty shell of a building that is being redone. A giant hole in the earth that is becoming a parking garage.
Nothing to see here, folks. Move it along, move it along.
I have friends, Cancer Parent Friends, in other cities and states. Some are at hospitals with beautiful views. One has a gorgeous view of the ocean.
Maybe it's better to have this view. Nothing to taunt me, to torture me. Outside, it's hot, and sticky, and there's nothing beautiful to look at.
I still wish I were out there.
A couple of hours after they left with The Husband, LW finished up one of her chemos and suddenly began breaking out in what looked like mosquito bites but, of course, weren't. No breathing problems, but her lips swelled and got a little purply.
Mama doesn't it like it when her chicks change color.
So, an allergic reaction to the chemo, etoposide, which is known to cause such things. No breathing problems, though. Tomorrow, we'll talk to the doctors and decide what to do.
Meanwhile, they hit her with both benadryl and hydrocortisone. She's sleeping now.
We are on a different side of the building than we've been the last couple of times. From here, I can see the other hospital we go to, the one for radiation. (Note to self: schedule followup appointment over there.) It seems strange to me that I can see it. I don't know why. I guess because hermetically sealed in here, it seems like outside isn't real, that it's just a backdrop someone has painted on our windows.
Our hospital has a small playground, and I can see it from here. We've been here since Thursday, and I haven't seen a single child in it. Not one. I thought about getting a pass for LW to go, then thought better of it. She has to stay on IV, and so it would be a "don't do that," "Be careful," "No!" sort of endeavor. I mean, how do you go down a slide with an IV pole?
Buildings, buildings, buildings here and cranes, cranes, cranes. An empty shell of a building that is being redone. A giant hole in the earth that is becoming a parking garage.
Nothing to see here, folks. Move it along, move it along.
I have friends, Cancer Parent Friends, in other cities and states. Some are at hospitals with beautiful views. One has a gorgeous view of the ocean.
Maybe it's better to have this view. Nothing to taunt me, to torture me. Outside, it's hot, and sticky, and there's nothing beautiful to look at.
I still wish I were out there.
Friday, July 11, 2008
Thoughts on a Hospital Room
We are at a Children's Hospital. In our room, in addition to the patient bed, there is a couch-thing that pulls out into a bed-thing.
It is exactly like what was in my dorm room in college. Many of you would recognize it -- big wooden thing, twin mattress, slides in and out.
Because they don't provide food to parents, I have a dorm-size refrigerator that I tote up every time. It's worth the back strain, especially since it's not my back. The Husband adjusts his schedule so he can come unload all our stuff. I just loll around, waiting for him to tote that barge, lift that bale.
And I have my guitar. Last night, LW and I played an extended remix of "If you're happy and you know it," that included verses such as "If you're sleepy and you know it, close your eyes ..."
Yeah, that worked.
So ... here I am, with the hum of the fridge, sitting on my couch/bed, occasionally picking up my guitar, with a roommate who doesn't want to go to sleep at a decent hour.
Talk about your deja vu ...
There is a rocking chair in this room, as there are in all the rooms on this floor. This one has a gold rectangle that informs me it is in memory of Francis, 2007.
If LW survives all this, I'm going to donate something and put a huge plate on it that says, "In honor of LW who is still alive and going strong." I appreciate the sentiment of wanting to make a room more comfortable in memory of a beautiful child ... but sometimes, on this floor, you just really need to see something that says Children CAN survive cancer.
Actually, I just read something that said exactly that. It was a story about a girl named Michelle Nolan who survived the very cancer LW has. And this survivor is older than me.
One of the weird things was that in the book, the mother details the very worst day of her entire life -- June 20, 1969. The day I was born, a mother's heart was breaking over her daughter having Wilms' Tumor.
Anyway, you'll hear no complaints from me about our hospital room. Back in Michelle's day (and still, to this day) there are parents who can't even spend the night with their child. There are horrid things called visiting hours and wards and just a curtain separating you from another patient.
We have our own room, own bathroom. Because we're just here getting chemo, the only thing Little Warrior is hooked up to is her iv pole. No monitors. No hordes of students wanting to examine her. For the most part, we're left alone, other than vitals checks and changing bags of fluid and chemos. We watch tv, and play games, and have tea parties, and sing songs. And when the walls begin to close in on us, we grab Mr. IV Pole and go to the playroom, or on a walk, or up to the 16th floor if the library is open.
Tonight, The Princess and Bo Peep are going to spend the night. We'll have a girls-only slumber party. We'll go up to the 16th floor and I'll let each of them get one thing from the vending machines.
I'm telling ya, it's so much like college, I keep looking for empty beer bottles and pizza boxes in the hall.
It is exactly like what was in my dorm room in college. Many of you would recognize it -- big wooden thing, twin mattress, slides in and out.
Because they don't provide food to parents, I have a dorm-size refrigerator that I tote up every time. It's worth the back strain, especially since it's not my back. The Husband adjusts his schedule so he can come unload all our stuff. I just loll around, waiting for him to tote that barge, lift that bale.
And I have my guitar. Last night, LW and I played an extended remix of "If you're happy and you know it," that included verses such as "If you're sleepy and you know it, close your eyes ..."
Yeah, that worked.
So ... here I am, with the hum of the fridge, sitting on my couch/bed, occasionally picking up my guitar, with a roommate who doesn't want to go to sleep at a decent hour.
Talk about your deja vu ...
There is a rocking chair in this room, as there are in all the rooms on this floor. This one has a gold rectangle that informs me it is in memory of Francis, 2007.
If LW survives all this, I'm going to donate something and put a huge plate on it that says, "In honor of LW who is still alive and going strong." I appreciate the sentiment of wanting to make a room more comfortable in memory of a beautiful child ... but sometimes, on this floor, you just really need to see something that says Children CAN survive cancer.
Actually, I just read something that said exactly that. It was a story about a girl named Michelle Nolan who survived the very cancer LW has. And this survivor is older than me.
One of the weird things was that in the book, the mother details the very worst day of her entire life -- June 20, 1969. The day I was born, a mother's heart was breaking over her daughter having Wilms' Tumor.
Anyway, you'll hear no complaints from me about our hospital room. Back in Michelle's day (and still, to this day) there are parents who can't even spend the night with their child. There are horrid things called visiting hours and wards and just a curtain separating you from another patient.
We have our own room, own bathroom. Because we're just here getting chemo, the only thing Little Warrior is hooked up to is her iv pole. No monitors. No hordes of students wanting to examine her. For the most part, we're left alone, other than vitals checks and changing bags of fluid and chemos. We watch tv, and play games, and have tea parties, and sing songs. And when the walls begin to close in on us, we grab Mr. IV Pole and go to the playroom, or on a walk, or up to the 16th floor if the library is open.
Tonight, The Princess and Bo Peep are going to spend the night. We'll have a girls-only slumber party. We'll go up to the 16th floor and I'll let each of them get one thing from the vending machines.
I'm telling ya, it's so much like college, I keep looking for empty beer bottles and pizza boxes in the hall.
Thursday, July 10, 2008
Good Day!
Well, we got here this morning and went for counts. She was at 290 last week, and needed to be at 1000 in order to get admitted to the hospital and given chemo. Frankly, I was expecting to be sent home.
9000! Thousand, not hundred! And then they said ... "And we have a room already."
We made counts! And didn't have to sit in the clinic all day!
So, we're in our room now, and I'm loving the coincidence that LW's counts were 9.09 and we're in room 909, when a cart comes by, pushed by a woman dressed in a hospital volunteer vest.
"Today is Thursday!" she says brightly. I look at her, blankly.
"It's pizza day!"
Oh. Yeah, we've never been given a room by lunchtime. Who knew?
So ... good counts, a fresh room, and a slice of pizza.
Classify these as good times.
9000! Thousand, not hundred! And then they said ... "And we have a room already."
We made counts! And didn't have to sit in the clinic all day!
So, we're in our room now, and I'm loving the coincidence that LW's counts were 9.09 and we're in room 909, when a cart comes by, pushed by a woman dressed in a hospital volunteer vest.
"Today is Thursday!" she says brightly. I look at her, blankly.
"It's pizza day!"
Oh. Yeah, we've never been given a room by lunchtime. Who knew?
So ... good counts, a fresh room, and a slice of pizza.
Classify these as good times.
Tuesday, July 08, 2008
The Novelty Has Worn Off
Lizard Eater is feeling bratty.
Thursday, we're supposed to go in the hospital for a 6 day stay. Let me tell you, the difference between a 4 day stay, ending on Sunday, and a 6 day stay, ending on Tuesday, is much more than 2 days. I think it must be some sort of dog years thing. 1 hospital day = 5 regular days.
Bags are mostly packed. Well, except for clothes, they always are. At the start of all this, I cleaned out a closet, and it is exclusively The Hospital Closet. We get home, and everything goes in there -- dorm fridge, toy box, dvd bag, clothes bags. I wash the laundry and put some fresh stuff in the reading bag, but that's about it. A few more bribe toys in the the Bribe Bag.
(I have a friend who explains that it's not bribing ... bribing is when you give someone something in order to get them to do something wrong. We're just giving a promised reward for good behavior.)
Don't judge me.
So, is that why I'm bratty? Because I don't want to go to the hospital?
Well, not really.
Because what is worse than going in the hospital is not going in the hospital. Last week, LW's ANC was 290. It was to be 1000 in order for her to get chemo. No idea if it will be.
So ... the chance is great that I will bundle all of this into the car Thursday morning, drive over an hour, wait for a couple hours, only to find out that LW and I have to go home.
And if her counts are high enough ... then we wait. Last time, it took 10 hours waiting in the clinic before we got a room. We were lucky. Several others were sent home.
The boring, whiny, reality of cancer.
Thursday, we're supposed to go in the hospital for a 6 day stay. Let me tell you, the difference between a 4 day stay, ending on Sunday, and a 6 day stay, ending on Tuesday, is much more than 2 days. I think it must be some sort of dog years thing. 1 hospital day = 5 regular days.
Bags are mostly packed. Well, except for clothes, they always are. At the start of all this, I cleaned out a closet, and it is exclusively The Hospital Closet. We get home, and everything goes in there -- dorm fridge, toy box, dvd bag, clothes bags. I wash the laundry and put some fresh stuff in the reading bag, but that's about it. A few more bribe toys in the the Bribe Bag.
(I have a friend who explains that it's not bribing ... bribing is when you give someone something in order to get them to do something wrong. We're just giving a promised reward for good behavior.)
Don't judge me.
So, is that why I'm bratty? Because I don't want to go to the hospital?
Well, not really.
Because what is worse than going in the hospital is not going in the hospital. Last week, LW's ANC was 290. It was to be 1000 in order for her to get chemo. No idea if it will be.
So ... the chance is great that I will bundle all of this into the car Thursday morning, drive over an hour, wait for a couple hours, only to find out that LW and I have to go home.
And if her counts are high enough ... then we wait. Last time, it took 10 hours waiting in the clinic before we got a room. We were lucky. Several others were sent home.
The boring, whiny, reality of cancer.
Monday, July 07, 2008
Feed Lizard Eater!
Not literally. And please, no lizards, frogs, or anything else green and slimy. (That means you, okra.)
But tell me your ideas and food finds. We're (hopefully, if counts are good) going in the hospital for 6 days on Thursday. So, the criteria for your suggestions:
* I'll have a dorm-size refrigerator. No freezer to speak of.
* I don't have time/inclination to pre-cook an array of delightful dishes to take.
* I have a hot pot.
* I have access to a microwave.
So, does anyone have any suggestions of things that are tasty? Things where I don't have to take a lot of peripheral ingredients. e.g. Tuna salad ... I'd have to take mayo, and pickle relish, and spices.
I've looked in the grocery store. My, those shelf-stable Hormel things really look like dog food, don't they?
Will be taking: some pasteurized eggs and bread so that LW can have her eggy and toast. (The food is really bad here, so I take some stuff to supplement her schlock.) Oh yes, there's a toaster in the family room, too. But no toaster oven.
And cashew butter. And diet sodas for me. American cheese for LW. Ewww, I know. But it's something she craves. And pickles for the same reason. So, no, I won't have a lot of room in the fridge.
Coffee and my french press. And I'll be taking some ramen noodles to toss with homemade peanut butter sauce. So I'll premake if it takes 5 minutes or less. Mmm, comfort food.
In return for your suggestions, I have sacrificed myself and sampled the new Mint Chocolate Chip Frappuccino at Starbucks. Mint lovers, we now have a summer flavor. (And yes, it tastes different than the peppermint mocha.) I hate to ruin the surprise for you, but I will ... when they give it to you, it's covered with chocolate whipped cream. Swoon ...
Hi. I'm Satan. Happy to lead you down the path to diet ruin.
But tell me your ideas and food finds. We're (hopefully, if counts are good) going in the hospital for 6 days on Thursday. So, the criteria for your suggestions:
* I'll have a dorm-size refrigerator. No freezer to speak of.
* I don't have time/inclination to pre-cook an array of delightful dishes to take.
* I have a hot pot.
* I have access to a microwave.
So, does anyone have any suggestions of things that are tasty? Things where I don't have to take a lot of peripheral ingredients. e.g. Tuna salad ... I'd have to take mayo, and pickle relish, and spices.
I've looked in the grocery store. My, those shelf-stable Hormel things really look like dog food, don't they?
Will be taking: some pasteurized eggs and bread so that LW can have her eggy and toast. (The food is really bad here, so I take some stuff to supplement her schlock.) Oh yes, there's a toaster in the family room, too. But no toaster oven.
And cashew butter. And diet sodas for me. American cheese for LW. Ewww, I know. But it's something she craves. And pickles for the same reason. So, no, I won't have a lot of room in the fridge.
Coffee and my french press. And I'll be taking some ramen noodles to toss with homemade peanut butter sauce. So I'll premake if it takes 5 minutes or less. Mmm, comfort food.
In return for your suggestions, I have sacrificed myself and sampled the new Mint Chocolate Chip Frappuccino at Starbucks. Mint lovers, we now have a summer flavor. (And yes, it tastes different than the peppermint mocha.) I hate to ruin the surprise for you, but I will ... when they give it to you, it's covered with chocolate whipped cream. Swoon ...
Hi. I'm Satan. Happy to lead you down the path to diet ruin.
Valedictorians Gone Wild -- Speaking in another language!
Quick question: if you attended a high school graduation and the valedictorian gave one sentence of her speech in a foreign language (and then translated it into English), would you:
a) Be impressed that she is multilingual
b) Be touched that she is communicating in her parents' tongue
c) Call for a policy that would require all commencement speeches to be in English.
(Shakes head and looks at shoes.)
a) Be impressed that she is multilingual
b) Be touched that she is communicating in her parents' tongue
c) Call for a policy that would require all commencement speeches to be in English.
(Shakes head and looks at shoes.)
Saturday, July 05, 2008
ESP
Do you have a relationship with someone where you are so connected, you know that there has to be something to ESP?
I do. My sister. Since I was about 15, we've been connected in such a way that when I was in my 20's, I used to joke that if I had sex, she lit a cigarette. Maybe we were connected before that, but if so, I didn't realize it. We are 16 years apart, so it's not like we grew up whispering confidences to each other late at night in the den.
Tonight, I just felt so low. So low, and without an immediately discernible reason. (I know, I know, my daughter has cancer. Believe it or not, you don't brood on that 24-7. At a certain point, it becomes normal and you get on with life. Until the next scans, anyway.)
So, I just had this overpowering compulsion that I must call my sister. I did and poof -- that's why the blue feeling. She is low.
We talked. And connected. But ...
Yet another dilemma of the minister ... the irony, that often you can't minister to those you love most.
I do. My sister. Since I was about 15, we've been connected in such a way that when I was in my 20's, I used to joke that if I had sex, she lit a cigarette. Maybe we were connected before that, but if so, I didn't realize it. We are 16 years apart, so it's not like we grew up whispering confidences to each other late at night in the den.
Tonight, I just felt so low. So low, and without an immediately discernible reason. (I know, I know, my daughter has cancer. Believe it or not, you don't brood on that 24-7. At a certain point, it becomes normal and you get on with life. Until the next scans, anyway.)
So, I just had this overpowering compulsion that I must call my sister. I did and poof -- that's why the blue feeling. She is low.
We talked. And connected. But ...
Yet another dilemma of the minister ... the irony, that often you can't minister to those you love most.
Friday, July 04, 2008
If you're planning on making hush puppies today ...
...don't. Make the below recipe instead.
If you live in the south, chances are good that rather than grilling, you're frying something, either fish or chicken. I will be frying up a mess of cornmeal-crusted catfish that my crazy uncle brought me about a month ago. (Tip: with frozen seafood, thaw them in cool water to which you've added a splash of vinegar.)
The natural accompaniment to fried catfish is hush puppies. But 'pups tend to be heavy. So ...
Getting Above Your Raising Hushpuppies
which you could also call
Deep Fried Jalapeno-Cheddar Gougeres
1/2 cup cornmeal
3/4 cup flour
4 tbsp butter
1 tsp. Salt
4 eggs
finely chopped jalapenos
small cubes of cheese
Heat oil to 375.
Combine the butter and salt with 1 cup of water in a medium sized saucepan and bring to a boil. Add the cornmeal and flour all at once, stirring rapidly over medium heat, and cook the mixture until it leaves the sides of t he pan and forms a compact ball. Continue cooking for three minutes longer, mashing the dough against the sides of the pan.
Remove the pan from the heat and, to cool the dough slightly, either turn it into the small bowl of an electric mixer and beat it for about one minute, or beat it with a sturdy wooden spoon for about two minutes.
Beat the eggs into the dough, one at a time. Continue beating until the dough is smooth and has a satiny look.
Mix in jalapenos and cubes of cheese.
Drop by the tablespoonful into fryer. Not too many; you don’t want to crowd your pan.
Cook til brown all over. (Don’t pull them out when they’re beautifully golden … the inside won’t be done.)
If you live in the south, chances are good that rather than grilling, you're frying something, either fish or chicken. I will be frying up a mess of cornmeal-crusted catfish that my crazy uncle brought me about a month ago. (Tip: with frozen seafood, thaw them in cool water to which you've added a splash of vinegar.)
The natural accompaniment to fried catfish is hush puppies. But 'pups tend to be heavy. So ...
Getting Above Your Raising Hushpuppies
which you could also call
Deep Fried Jalapeno-Cheddar Gougeres
1/2 cup cornmeal
3/4 cup flour
4 tbsp butter
1 tsp. Salt
4 eggs
finely chopped jalapenos
small cubes of cheese
Heat oil to 375.
Combine the butter and salt with 1 cup of water in a medium sized saucepan and bring to a boil. Add the cornmeal and flour all at once, stirring rapidly over medium heat, and cook the mixture until it leaves the sides of t he pan and forms a compact ball. Continue cooking for three minutes longer, mashing the dough against the sides of the pan.
Remove the pan from the heat and, to cool the dough slightly, either turn it into the small bowl of an electric mixer and beat it for about one minute, or beat it with a sturdy wooden spoon for about two minutes.
Beat the eggs into the dough, one at a time. Continue beating until the dough is smooth and has a satiny look.
Mix in jalapenos and cubes of cheese.
Drop by the tablespoonful into fryer. Not too many; you don’t want to crowd your pan.
Cook til brown all over. (Don’t pull them out when they’re beautifully golden … the inside won’t be done.)
Thursday, July 03, 2008
In the clinic
"I can't complain but sometimes I still do." Joe Walsh
In the clinic, waiting on counts, waiting on chemo. Kinda crazy today, since tomorrow is a holiday. All the Thursday kids and Friday kids jammed together.
Brought up 3 dozen red velvet cupcakes. I have to admit, there is something very satisfactory about looking around a big room and seeing lots of people chomping your gift, even if it is a cancer clinic. Especially if it's a cancer clinic. Kids, parents, even nurses.
Tomorrow is the 4th and unless something unexpected happens, we won't be in the hospital. The Husband is off work, and The Parents are coming over for a fish fry.
Her scans were good, Little Warrior is busy eating crackers and drawing pictures, all I have to do is sit here and wait.
Why am I so fractious? So impatient? I've only been here 3 hours, which in Chemo time, is not much.
I don't know.
But tonight, I'll go home and since it's "Friday night" because of the holiday, I'll have a Hypnotiq Breeze or a margarita. Probably the breeze. It's blue. Patriotic, you know.
You can have one too. It'll take that fractious right outta ya.
The Husband's Hypnotiq Breeze
3 parts Hypnotiq
1 1/2 parts coconut rum
1/2 part pineapple juice
Shake with ice, pour, then add a splash of 7 up. If you're not a lightweight, use 2 parts coconut rum.
In the clinic, waiting on counts, waiting on chemo. Kinda crazy today, since tomorrow is a holiday. All the Thursday kids and Friday kids jammed together.
Brought up 3 dozen red velvet cupcakes. I have to admit, there is something very satisfactory about looking around a big room and seeing lots of people chomping your gift, even if it is a cancer clinic. Especially if it's a cancer clinic. Kids, parents, even nurses.
Tomorrow is the 4th and unless something unexpected happens, we won't be in the hospital. The Husband is off work, and The Parents are coming over for a fish fry.
Her scans were good, Little Warrior is busy eating crackers and drawing pictures, all I have to do is sit here and wait.
Why am I so fractious? So impatient? I've only been here 3 hours, which in Chemo time, is not much.
I don't know.
But tonight, I'll go home and since it's "Friday night" because of the holiday, I'll have a Hypnotiq Breeze or a margarita. Probably the breeze. It's blue. Patriotic, you know.
You can have one too. It'll take that fractious right outta ya.
The Husband's Hypnotiq Breeze
3 parts Hypnotiq
1 1/2 parts coconut rum
1/2 part pineapple juice
Shake with ice, pour, then add a splash of 7 up. If you're not a lightweight, use 2 parts coconut rum.
Wednesday, July 02, 2008
On Cupcakes
Okay. You are my friends, so I'll share my secret about cupcakes. Or regular cake for that matter.
It's all about the frosting.
When it comes to the cake, I frequently use mixes. Not only do I think they're okay, in some cases, I think they're superior. Better texture.
Frosting, however, is a different story. The stuff in a can -- bleaugh. Too sweet, no real flavor, cloying texture.
And homemade frosting is easy. I'm not even talking about cooked buttercreams (which are, I'll tell you, completely divine) of the Italian or French persuasion. Plain old powdered sugar mixed with butter is a million steps ahead of the stuff in a can.
And here's my secret tip ... flavor your frosting with ... wait for it ... candy flavoring.
Candy flavoring is intense, lots of different flavors, and made to withstand the abuse candymakers put it to.
Watermelon frosting? Tangerine? Mmm.
I have drawn so many raves for Butter Rum frosting. Simple white cake, with a powdered sugar frosting, with butter rum candy flavoring.
So there you go. My tip to you. We'll keep it our little secret.
It's all about the frosting.
When it comes to the cake, I frequently use mixes. Not only do I think they're okay, in some cases, I think they're superior. Better texture.
Frosting, however, is a different story. The stuff in a can -- bleaugh. Too sweet, no real flavor, cloying texture.
And homemade frosting is easy. I'm not even talking about cooked buttercreams (which are, I'll tell you, completely divine) of the Italian or French persuasion. Plain old powdered sugar mixed with butter is a million steps ahead of the stuff in a can.
And here's my secret tip ... flavor your frosting with ... wait for it ... candy flavoring.
Candy flavoring is intense, lots of different flavors, and made to withstand the abuse candymakers put it to.
Watermelon frosting? Tangerine? Mmm.
I have drawn so many raves for Butter Rum frosting. Simple white cake, with a powdered sugar frosting, with butter rum candy flavoring.
So there you go. My tip to you. We'll keep it our little secret.
Tuesday, July 01, 2008
All clear!
Nothing is ever that definitive, of course. But no new tumors. The skin on the kidney that had the recent surgery is "thick" ... but that, hopefully, is just scarring. They'll keep an eye on it.
Clinic chemo Thursday. (As opposed to In-hospital Chemo.) I love taking cupcakes -- put three dozen cupcakes in the family room and FOOSH they disappear. July 3rd, so red velvet, cream cheese frosting and blue icing stars.
Thank you for all the prayers and thoughts, Friends.
Clinic chemo Thursday. (As opposed to In-hospital Chemo.) I love taking cupcakes -- put three dozen cupcakes in the family room and FOOSH they disappear. July 3rd, so red velvet, cream cheese frosting and blue icing stars.
Thank you for all the prayers and thoughts, Friends.
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