Well, the last 20 minutes of it.
I turned it on because it's blistering hot outside and you have to spray with Deet just to walk to your car, the skeeters are so bad, and I won't be starting back to seminary with my mates next week, and even though I know it's the cure, not the cancer, LW has lost all her eyelashes and most of her eyebrows and so when she's asleep and not running around like a healthy maniac, she looks really ill, I mean, she looks like a kid with cancer for freak's sake and so at night, looking at her, I can't help but get a little teary and think things that would be great for a Lifetime movie but for me, living my life, really Not So Great and so what I'm really trying to say is that I needed a reminder, a silly, Pavlovian (to me) reminder that Christmas WILL COME AGAIN.
Please.
Sunday, August 31, 2008
Wednesday, August 27, 2008
Disgusted with the news media
Oh C-span, my darling, how I've missed you.
The hospital didn't have C-span, so I had to watch the convention filtered through one of the cable networks. I clicked back and forth between CNN and MSNBC. Frankly, both made me want to hurl Little Warrior's orange juice at the tv.
Long, long ago, I was the editor of my high school newspaper. Our journalism was ruthless with even the slightest hint of slanted journalism. "Look at the word you used here," she would say, making you scrutinize what you wrote. "Can you find another word that doesn't indicate a judgment?"
Are those days gone? Do teachers not teach this anymore?
Stories that purport to be straight news get their little digs in. Like the story about how Bill Clinton has to support "the man who forced his wife from the race."
Last night, I heard one CNN talking head talk about how the reason Hillary wasn't the VP nominee was because Michelle wouldn't let Barack. He held forth on this for a few minutes. Wolf Blitzer finally asked what he based that on. "Oh, just my gut feeling." And that was that. Apparently "gut feeling" passes for actual substantiated reports these days.
I agree with the person who never claimed to be a journalist, Jon Stewart:
The hospital didn't have C-span, so I had to watch the convention filtered through one of the cable networks. I clicked back and forth between CNN and MSNBC. Frankly, both made me want to hurl Little Warrior's orange juice at the tv.
Long, long ago, I was the editor of my high school newspaper. Our journalism was ruthless with even the slightest hint of slanted journalism. "Look at the word you used here," she would say, making you scrutinize what you wrote. "Can you find another word that doesn't indicate a judgment?"
Are those days gone? Do teachers not teach this anymore?
Stories that purport to be straight news get their little digs in. Like the story about how Bill Clinton has to support "the man who forced his wife from the race."
Last night, I heard one CNN talking head talk about how the reason Hillary wasn't the VP nominee was because Michelle wouldn't let Barack. He held forth on this for a few minutes. Wolf Blitzer finally asked what he based that on. "Oh, just my gut feeling." And that was that. Apparently "gut feeling" passes for actual substantiated reports these days.
I agree with the person who never claimed to be a journalist, Jon Stewart:
"Stop, stop, stop, stop hurting America."
Tuesday, August 26, 2008
I don't understand Woody Allen
I don't mean that in a negative nor a judgmental way, like, "I don't understand people who leave dogs in a hot car on a summer day."
I mean I just don't understand him and what he feels about life. I never took calculus and it's more like that. If you began jabbering to me about derivatives and intervals, I would look at you blankly.
I'm reading a little interview with him in Newsweek. He talks, matter-of-factly, about the existential horror of being alive. And how he has enjoyable moments, but then goes back to realizing how life is such a meaningless flicker.
I try to not be a total cornball, try to not repeat shallow, trite things that attempt to explain it all. But at heart, I am a cornball. I think that life, just living, is an extraordinary gift. The pleasure of breathing can overwhelm me.
But I don't pat myself on the back for this. Quite possibly, just like that happiness quotient they reported on a year or so ago, it was just something screwed into my DNA.
On one hand, I feel lucky, because I enjoy feeling happy, enjoy feeling gratitude. But I'm completely amenable to the concept that I'm equally unlucky. I mean, compare my body of work with Allen's. In terms of lasting accomplishment, he wins hands-down. Contentment may hold me back from greatness. (shrugs) 'S okay by me.
What makes one person one way and another, another. A question for the ages. When Little Warrior's hair began coming out in handfuls, we went outside and scattered it for the birds to make their nests. What makes one person do that, and believe in it, and another see that as treacle?
I can't speak for Mr. Allen, but for me, I can't claim to be all one way. On childhood cancer, I am as much of a black and white realist as they come. I don't think this is a trip to Holland, I don't think that God will keep her alive because she has great things to do nor take her because she's too good for this world. I don't think she agreed to this before she was born, I don't think she got this to teach us all lessons. I certainly don't think that I was chosen for this because she needed someone special. I don't believe it happened for a reason. Period.
But still, that inner whatever is there. And I find joy in being together with her, I find beauty in all the people I meet on this leg of our journey. And even when she was first diagnosed, at 7 months old, I realized that even if she didn't live much past that, it was worth it. Even at 7 months, it was a gift for her to be born. For us, and for her.
Woody Allen says he "agrees with Sophocles' suggestion that to never have been born may be the greatest boon."
No judgment. No criticism. But man, I can't understand that at all. And unlike calculus, I don't think study would change that.
I mean I just don't understand him and what he feels about life. I never took calculus and it's more like that. If you began jabbering to me about derivatives and intervals, I would look at you blankly.
I'm reading a little interview with him in Newsweek. He talks, matter-of-factly, about the existential horror of being alive. And how he has enjoyable moments, but then goes back to realizing how life is such a meaningless flicker.
I try to not be a total cornball, try to not repeat shallow, trite things that attempt to explain it all. But at heart, I am a cornball. I think that life, just living, is an extraordinary gift. The pleasure of breathing can overwhelm me.
But I don't pat myself on the back for this. Quite possibly, just like that happiness quotient they reported on a year or so ago, it was just something screwed into my DNA.
On one hand, I feel lucky, because I enjoy feeling happy, enjoy feeling gratitude. But I'm completely amenable to the concept that I'm equally unlucky. I mean, compare my body of work with Allen's. In terms of lasting accomplishment, he wins hands-down. Contentment may hold me back from greatness. (shrugs) 'S okay by me.
What makes one person one way and another, another. A question for the ages. When Little Warrior's hair began coming out in handfuls, we went outside and scattered it for the birds to make their nests. What makes one person do that, and believe in it, and another see that as treacle?
I can't speak for Mr. Allen, but for me, I can't claim to be all one way. On childhood cancer, I am as much of a black and white realist as they come. I don't think this is a trip to Holland, I don't think that God will keep her alive because she has great things to do nor take her because she's too good for this world. I don't think she agreed to this before she was born, I don't think she got this to teach us all lessons. I certainly don't think that I was chosen for this because she needed someone special. I don't believe it happened for a reason. Period.
But still, that inner whatever is there. And I find joy in being together with her, I find beauty in all the people I meet on this leg of our journey. And even when she was first diagnosed, at 7 months old, I realized that even if she didn't live much past that, it was worth it. Even at 7 months, it was a gift for her to be born. For us, and for her.
Woody Allen says he "agrees with Sophocles' suggestion that to never have been born may be the greatest boon."
No judgment. No criticism. But man, I can't understand that at all. And unlike calculus, I don't think study would change that.
Monday, August 25, 2008
I didn't just see Michelle ...
I thought Michelle Obama's speech was great and her delivery fantastic.
Amongst all the nattering heads afterward, what was touching to me were the African American correspondents who were clearly affected, and said so. They saw their sister, their mother, their wife, their daughter, up there.
For me, I saw my sister's high school best friend, Wanda, who was valedictorian, but our backwoods school board couldn't take a black girl being valedictorian so that year -- only that year -- they had the top 5 students be "co-valedictorians."
I saw my own friends, like my college friend, "T", who introduced me to the Negro National Anthem. I saw my friend L.A.'s daughter, a drop-dead 13 year old, Danish on her father's side and Jamaican on her mother's.
The speech itself was terrific. The delivery was warm and engaging and it pulled you in with its sincerity.
And Michelle Obama is the potential first-lady. And she's African American. And she makes ME proud to be an American.
Amongst all the nattering heads afterward, what was touching to me were the African American correspondents who were clearly affected, and said so. They saw their sister, their mother, their wife, their daughter, up there.
For me, I saw my sister's high school best friend, Wanda, who was valedictorian, but our backwoods school board couldn't take a black girl being valedictorian so that year -- only that year -- they had the top 5 students be "co-valedictorians."
I saw my own friends, like my college friend, "T", who introduced me to the Negro National Anthem. I saw my friend L.A.'s daughter, a drop-dead 13 year old, Danish on her father's side and Jamaican on her mother's.
The speech itself was terrific. The delivery was warm and engaging and it pulled you in with its sincerity.
And Michelle Obama is the potential first-lady. And she's African American. And she makes ME proud to be an American.
Sunday, August 24, 2008
Please do NOT kill your dad
Well, since I have some extra time, I'm checking in with my blogstats. I check in periodically. The actual numbers don't mean a lot to me, nor what browser folks use, but the search terms used to find my site are interesting.
Several phrases show up practically every time. It's funny, when writing a post, I've never thought, "people will google this later and find my site." Some of the most popular search terms:
Agave+margarita, which goes to: The Perfect Margarita
That's nice, because along with preaching the religion of Unitarian Universalism, I preach the religion of a perfect margarita. I don't think I get seminary credit for it, though.
Party+Scene+Breakfast+at+Tiffany's, which goes to: The Party Scene in Breakfast at Tiffany's
Interesting. I wonder why so many people google that.
Olbermann+Unitarian, which goes to: Keith Olbermann Outs Himself as a Unitarian
Eight+Cow+Wife, which goes to: The 8 Cow Wife
I'm glad. I think that's a lovely little story about how we treat people.
There's a few others that show up often, like people googling for information on canceling an interview, who wind up on my post about deciding to cancel my interview with a UU minister. Maybe it gives them perspective, but I doubt it's what they're looking for.
And THEN ...
There is this search phrase, which shows up a coupla times every week:
How+to+kill+your+dad
Oh My.
Well, the reason why that leads them to my site is because of this, where I was speaking metaphorically about Little Warrior being so pitifully brave that it ripped The Husband's heart.
Let me state UNEQUIVOCALLY that I do not in any form condone killing one's father. Please seek help from your school counselor, police officer, minister, rabbi, or iman. Or another trusted adult.
Thank you.
Several phrases show up practically every time. It's funny, when writing a post, I've never thought, "people will google this later and find my site." Some of the most popular search terms:
Agave+margarita, which goes to: The Perfect Margarita
That's nice, because along with preaching the religion of Unitarian Universalism, I preach the religion of a perfect margarita. I don't think I get seminary credit for it, though.
Party+Scene+Breakfast+at+Tiffany's, which goes to: The Party Scene in Breakfast at Tiffany's
Interesting. I wonder why so many people google that.
Olbermann+Unitarian, which goes to: Keith Olbermann Outs Himself as a Unitarian
Eight+Cow+Wife, which goes to: The 8 Cow Wife
I'm glad. I think that's a lovely little story about how we treat people.
There's a few others that show up often, like people googling for information on canceling an interview, who wind up on my post about deciding to cancel my interview with a UU minister. Maybe it gives them perspective, but I doubt it's what they're looking for.
And THEN ...
There is this search phrase, which shows up a coupla times every week:
How+to+kill+your+dad
Oh My.
Well, the reason why that leads them to my site is because of this, where I was speaking metaphorically about Little Warrior being so pitifully brave that it ripped The Husband's heart.
Let me state UNEQUIVOCALLY that I do not in any form condone killing one's father. Please seek help from your school counselor, police officer, minister, rabbi, or iman. Or another trusted adult.
Thank you.
Me and Janet Leigh.
When is a warm, relaxing shower -- not? Well, when you're staying in a hospital with a 3 year old.
It's always a bit nerve wracking. I'm leaving Little Warrior effectively alone in our room. I could leave the bathroom door open, or unlocked, but the PCA's job is to come in and measure how much LW has peed in a plastic hat. Let's just say we've had a couple of "oops" moments.
So, I set LW up in the fort that we built yesterday, surrounded by toys and sticker books. I explain that Mama is going to take a quick shower. She's already learned how to drag her IV pole around, so I tell her that if there is an EMERGENCY, to come bang on the bathroom door.
Like you need more foreshadowing than that.
So, I'm in the shower, enjoying the warmth, shampoo in my hair (I have come to the conclusion that the most dangerous thing you can do in the shower is to lather up your hair. That is always an impetus to disaster), thinking, you know, this shower, while clearly deficient, is not the worst I've had, when I become aware of a booming sound.
It is the sound of a 3 year old's fist, pound, pound, pounding at my door.
Oh no. The needle has pulled out of her port. Her lines have ripped. Bad things are happening! "I'm coming, just a minute!" I call, hurriedly grabbing a towel and wrapping it around me.
I open the door.
She looks up at me. She lifts up one hand, holding a sticker. Her brow furrows. "It ripped," she informs me.
Dripping, I embark on an explanation of what constitutes an emergency and what doesn't and lead her back to her fort, assuring her that Mama will be out in just a few minutes and AFTER my shower, I will help with the sticker.
Back in the shower.
"Waaaah!"
Quick rinse, "I'm coming, honey, let me put my clothes on!" Towel around hair, clothes pulled on wet body, open the door -- she gives me a look that says I have failed her, wrecked her, she'll never dedicate her first novel to me and never let me visit my grandchildren. "My foot!"
Apparently she ran over a toe with Mr. IV Pole. "Don't touch it!" she says. "Kiss it!"
I give it the barest kiss possible, which satisfies her.
I remember that I never shaved my legs.
Oh well. Quoth Little Warrior, "Nevermore."
It's always a bit nerve wracking. I'm leaving Little Warrior effectively alone in our room. I could leave the bathroom door open, or unlocked, but the PCA's job is to come in and measure how much LW has peed in a plastic hat. Let's just say we've had a couple of "oops" moments.
So, I set LW up in the fort that we built yesterday, surrounded by toys and sticker books. I explain that Mama is going to take a quick shower. She's already learned how to drag her IV pole around, so I tell her that if there is an EMERGENCY, to come bang on the bathroom door.
Like you need more foreshadowing than that.
So, I'm in the shower, enjoying the warmth, shampoo in my hair (I have come to the conclusion that the most dangerous thing you can do in the shower is to lather up your hair. That is always an impetus to disaster), thinking, you know, this shower, while clearly deficient, is not the worst I've had, when I become aware of a booming sound.
It is the sound of a 3 year old's fist, pound, pound, pounding at my door.
Oh no. The needle has pulled out of her port. Her lines have ripped. Bad things are happening! "I'm coming, just a minute!" I call, hurriedly grabbing a towel and wrapping it around me.
I open the door.
She looks up at me. She lifts up one hand, holding a sticker. Her brow furrows. "It ripped," she informs me.
Dripping, I embark on an explanation of what constitutes an emergency and what doesn't and lead her back to her fort, assuring her that Mama will be out in just a few minutes and AFTER my shower, I will help with the sticker.
Back in the shower.
"Waaaah!"
Quick rinse, "I'm coming, honey, let me put my clothes on!" Towel around hair, clothes pulled on wet body, open the door -- she gives me a look that says I have failed her, wrecked her, she'll never dedicate her first novel to me and never let me visit my grandchildren. "My foot!"
Apparently she ran over a toe with Mr. IV Pole. "Don't touch it!" she says. "Kiss it!"
I give it the barest kiss possible, which satisfies her.
I remember that I never shaved my legs.
Oh well. Quoth Little Warrior, "Nevermore."
Saturday, August 23, 2008
Whining ... and reality check
My inner brat is whining. I will tell her to hush in a minute, but first I will let her have her voice, because I really want this blog to be honest, and that includes petulant behavior on my part.
Waah!
It's only the second day of our 6 day stint! And we have the same nurse as last night, the one who would just leave the door open, the bright light spilling in, in the middle of the night! And my husband and my sister-in-law are at home, getting my kids ready for their first day of school, which I'm going to miss. No meeting the teachers. No packing the lunches. No greeting them in the afternoon with a special snack, to sit at the kitchen table and hear who is in their classes and what they think of their teachers.
Before I come to the hospital, I think, "Really, it's not so bad. It's comfortable. And they have wifi. And it gives me time to focus on this delightful kid who I really like. No housework! No laundry! Just eat, sleep, and play!"
And I get here, and it's not so bad, it's just that I'm so darn homesick. And the world is moving on without me. I've been placed in a timeout box and the rest of the world, oblivious, fusses with the little stresses of normal life that, removed from it all, are so wonderful.
Whine.
But there, already, I am faking my whining. Because crowding in, whether I'm ready or not, come my thoughts that are with another tonight. Another mom, who is watching her child fade ...
Miles away, those of us in the same club, but who hope to never compete for this mettle of courage, weep with her. And pray. And desperately hope against hope for a miracle.
I dry my eyes. I want neither the nurses nor Little Warrior to see them.
I look around our room. LW is pulling the clothes off a cheap dolly I just gave her ("She doesn't have hair ... she gets keeemo, too," she informs me) and watching "The Bear Movie" (Jungle Book) and looking not at all sleepy. The darkness outside and the slightly-more-quiet-ness of the floor lends a cozy feel to our room. LW chatters to me about the doll and sips her water ...
And I am very, very grateful to be here.
Waah!
It's only the second day of our 6 day stint! And we have the same nurse as last night, the one who would just leave the door open, the bright light spilling in, in the middle of the night! And my husband and my sister-in-law are at home, getting my kids ready for their first day of school, which I'm going to miss. No meeting the teachers. No packing the lunches. No greeting them in the afternoon with a special snack, to sit at the kitchen table and hear who is in their classes and what they think of their teachers.
Before I come to the hospital, I think, "Really, it's not so bad. It's comfortable. And they have wifi. And it gives me time to focus on this delightful kid who I really like. No housework! No laundry! Just eat, sleep, and play!"
And I get here, and it's not so bad, it's just that I'm so darn homesick. And the world is moving on without me. I've been placed in a timeout box and the rest of the world, oblivious, fusses with the little stresses of normal life that, removed from it all, are so wonderful.
Whine.
But there, already, I am faking my whining. Because crowding in, whether I'm ready or not, come my thoughts that are with another tonight. Another mom, who is watching her child fade ...
Miles away, those of us in the same club, but who hope to never compete for this mettle of courage, weep with her. And pray. And desperately hope against hope for a miracle.
I dry my eyes. I want neither the nurses nor Little Warrior to see them.
I look around our room. LW is pulling the clothes off a cheap dolly I just gave her ("She doesn't have hair ... she gets keeemo, too," she informs me) and watching "The Bear Movie" (Jungle Book) and looking not at all sleepy. The darkness outside and the slightly-more-quiet-ness of the floor lends a cozy feel to our room. LW chatters to me about the doll and sips her water ...
And I am very, very grateful to be here.
I hope I remember this ...
I've always enjoyed how normal life weaves together with historically significant moments. Listening to your grandparents talk of being at Aunt So-and-So's house when the war ended and such ...
Some sad, some happy. I was at my parents' house when the Berlin Wall came down. My mother and I watched it on tv and excitedly wondered about the new age of peace that was coming ...
(laughs and shrugs)
Late last night, I had just settled back into my hospital couch after taking Little Warrior for one of her many bathroom trips when I heard a "beep, beep, beep."
I picked up my phone. It was a text message from Obama saying who his veep would be.
Nothing big. Just normal (that isn't, so much) life, weaving together with a historically signficant (time will tell) moment.
Some sad, some happy. I was at my parents' house when the Berlin Wall came down. My mother and I watched it on tv and excitedly wondered about the new age of peace that was coming ...
(laughs and shrugs)
Late last night, I had just settled back into my hospital couch after taking Little Warrior for one of her many bathroom trips when I heard a "beep, beep, beep."
I picked up my phone. It was a text message from Obama saying who his veep would be.
Nothing big. Just normal (that isn't, so much) life, weaving together with a historically signficant (time will tell) moment.
Friday, August 22, 2008
There IS such a thing as being TOO helpful ...
We're in the hospital. Just got a phone call ... "John???"
I know my voice is low, but ... okay, not the point.
"Wrong number."
10 seconds later, phone rings again, looking for John. I clarify: "You're calling a hospital room."
She says, "Yes, I'm calling from Canada. John isn't there anymore?"
No, he's not.
"Well ... I'm calling from Canada ... can you tell me what his new number is?"
For a second, I looked around wildly, trying to figure out how to find John in this hospital of hundreds. Then sanity jumped in. And, you know, it's not like I could transfer them, having a patient phone.
Good luck, Canada Lady. I think you'll need it.
I know my voice is low, but ... okay, not the point.
"Wrong number."
10 seconds later, phone rings again, looking for John. I clarify: "You're calling a hospital room."
She says, "Yes, I'm calling from Canada. John isn't there anymore?"
No, he's not.
"Well ... I'm calling from Canada ... can you tell me what his new number is?"
For a second, I looked around wildly, trying to figure out how to find John in this hospital of hundreds. Then sanity jumped in. And, you know, it's not like I could transfer them, having a patient phone.
Good luck, Canada Lady. I think you'll need it.
Tuesday, August 19, 2008
Hospital Beauty
Got up early this morning to take Little Warrior to the hospital for her 6-day inpatient. Minivan loaded to the brim, three-dozen chocolate malt cupcakes on ice. Pouring down rain, tons of traffic, making the 1.25 hour commute a 1.75 hour commute.
On the way, I issued a challenge to myself:
Parked down in the garage and rode the first elevator up to the third floor, where we got off and went to get our pre-hospitalization coffee/bagel (me) and chocolate milk/donuts (LW). She chose a pink frosted and a chocolate frosted, no sprinkles. She doesn't like sprinkles on donuts, she informed me. "But I like sprinkles on ... cupcakes, and ice cream, and cookies," she said to me, sing-song.
And I appreciated the beauty of that.
We go on the second elevator and went up the 14th floor, which is actually the 13th floor, but you know, 13 plus it's the Children's Cancer Clinic. I don't blame them.
Signed in, then LW wanted to look at the pictures of the art cows on the wall. We talked about all the different kinds.
And I appreciated the beauty of that.
The nurse came and got us and took us to the little room where she accesses LW's port. As she was cleaning and getting ready for the poke, I began telling Little Warrior a story about her shoes (which are completely adorable and have a mouse face on each one), and how last night, they scurried from room to room, looking for her (she slept in her brother's room last night), and she was so interested in the story, she said "Ouch" with the poke, but that was it.
And I appreciated the beauty of that.
And I'm afraid that was the last of my beauty-appreciation for the day.
Right after being accessed, LW yanked off her hat, saying it made her head itch. Said head was covered with what looked like mosquito bites. As soon as that detail registered in my head, the "bites" were popping up all over -- belly, arms, privates ... uh-oh.
Nurse called Nurse Practioner. Allergic reaction, but to what? This has happened before, but she didn't get anything this time. Just a flush with saline and heparin.
I know, I know, you've heard heparin in the news. Well, that stuff isn't applicable, but ... an allergy to heparin? Wait! Maybe the preservative in the heparin!
Nurse Practitioner goes and speaks to the pharmacists. Nuh-uh. They only use preservative-free hep. Oncologist is consulted. He's never heard of this.
(Side note: I'm getting tired of playing Stump the Oncologist. We keep winning.)
So, it's a mystery. They gave her benadryl, and the hives gradually disappeared. Okay, so when do we get a room and get this chemo-party started.
And then ... it's happened to others, but never to us ...
"I'm sorry ... but her ANC is too low for chemo. Go home and come back Friday."
I'll work on beauty again tomorrow.
On the way, I issued a challenge to myself:
This is not actually that bad. There's fun that you can find in this, and unexpected benefits popping up. So, LE, you need to spend the rest of today looking for beauty, wherever you can find it.
Parked down in the garage and rode the first elevator up to the third floor, where we got off and went to get our pre-hospitalization coffee/bagel (me) and chocolate milk/donuts (LW). She chose a pink frosted and a chocolate frosted, no sprinkles. She doesn't like sprinkles on donuts, she informed me. "But I like sprinkles on ... cupcakes, and ice cream, and cookies," she said to me, sing-song.
And I appreciated the beauty of that.
We go on the second elevator and went up the 14th floor, which is actually the 13th floor, but you know, 13 plus it's the Children's Cancer Clinic. I don't blame them.
Signed in, then LW wanted to look at the pictures of the art cows on the wall. We talked about all the different kinds.
And I appreciated the beauty of that.
The nurse came and got us and took us to the little room where she accesses LW's port. As she was cleaning and getting ready for the poke, I began telling Little Warrior a story about her shoes (which are completely adorable and have a mouse face on each one), and how last night, they scurried from room to room, looking for her (she slept in her brother's room last night), and she was so interested in the story, she said "Ouch" with the poke, but that was it.
And I appreciated the beauty of that.
And I'm afraid that was the last of my beauty-appreciation for the day.
Right after being accessed, LW yanked off her hat, saying it made her head itch. Said head was covered with what looked like mosquito bites. As soon as that detail registered in my head, the "bites" were popping up all over -- belly, arms, privates ... uh-oh.
Nurse called Nurse Practioner. Allergic reaction, but to what? This has happened before, but she didn't get anything this time. Just a flush with saline and heparin.
I know, I know, you've heard heparin in the news. Well, that stuff isn't applicable, but ... an allergy to heparin? Wait! Maybe the preservative in the heparin!
Nurse Practitioner goes and speaks to the pharmacists. Nuh-uh. They only use preservative-free hep. Oncologist is consulted. He's never heard of this.
(Side note: I'm getting tired of playing Stump the Oncologist. We keep winning.)
So, it's a mystery. They gave her benadryl, and the hives gradually disappeared. Okay, so when do we get a room and get this chemo-party started.
And then ... it's happened to others, but never to us ...
"I'm sorry ... but her ANC is too low for chemo. Go home and come back Friday."
I'll work on beauty again tomorrow.
Sunday, August 17, 2008
Side Effects of Chemo
I really don't think they said anything about this when I signed those forms ...
Saturday, August 16, 2008
Out of character
Last night, a friend of mine went outside for a cigarette break, and oddly, I felt the desire to join her, though I haven't smoked in 20 years. (A youthful phase, begun by smoking in the play Stage Door ...)
What would your friends think? I ask myself. Well, I guess old friends would act strange, they'd shake their heads and say I've changed.
Well, something's lost, but something's gained in living every day.
I feel a desire to act out of character because, paradoxically, acting like myself feels less honest. Even my best friends are separated from me by the simple fact that they do not look at one of their children several times a day and wonder if they'll be alive this time next year.
We continue on, and we all live similar lives with shared concerns. Setting up the R.E. program, where should the theatre workshop meet, who will our speakers be for the fall. We talk, we send emails, our lives are parallel is so many ways.
Right now, many of us are probably doing laundry. But I am doing my laundry, and Little Warrior's, so that I can pack our bags to go into the hospital on Tuesday for LW to get 6 days of chemotherapy. I am urging food on her now, trying to stuff her because of the inevitable weight loss about to occur.
It's woven into normal life. And I have a normal life ... except.
And it's this little "except" that colors everything, that makes me feel like I'm just pretending to be myself. And inside, I feel that I'm a completely different person. And I can act normal and talk normal and live this parallel life at the same time I'm living this "other" life, this other life that is made up of counts and blood transfusions and bald children with eyelashes falling out and somehow, somehow, I'm supposed to weave these two lives together, emailing worship speakers from the hospital and researching the best bento boxes on one screen while on another screen I research the aftereffects of neulasta and cytoxan and all the other poisons I authorize the professionals to pump into my 3 year old.
It is not anyone's fault that I live these two lives. It is all choices that I have made.
Well, except one.
What would your friends think? I ask myself. Well, I guess old friends would act strange, they'd shake their heads and say I've changed.
Well, something's lost, but something's gained in living every day.
I feel a desire to act out of character because, paradoxically, acting like myself feels less honest. Even my best friends are separated from me by the simple fact that they do not look at one of their children several times a day and wonder if they'll be alive this time next year.
We continue on, and we all live similar lives with shared concerns. Setting up the R.E. program, where should the theatre workshop meet, who will our speakers be for the fall. We talk, we send emails, our lives are parallel is so many ways.
Right now, many of us are probably doing laundry. But I am doing my laundry, and Little Warrior's, so that I can pack our bags to go into the hospital on Tuesday for LW to get 6 days of chemotherapy. I am urging food on her now, trying to stuff her because of the inevitable weight loss about to occur.
It's woven into normal life. And I have a normal life ... except.
And it's this little "except" that colors everything, that makes me feel like I'm just pretending to be myself. And inside, I feel that I'm a completely different person. And I can act normal and talk normal and live this parallel life at the same time I'm living this "other" life, this other life that is made up of counts and blood transfusions and bald children with eyelashes falling out and somehow, somehow, I'm supposed to weave these two lives together, emailing worship speakers from the hospital and researching the best bento boxes on one screen while on another screen I research the aftereffects of neulasta and cytoxan and all the other poisons I authorize the professionals to pump into my 3 year old.
It is not anyone's fault that I live these two lives. It is all choices that I have made.
Well, except one.
Feeling Good
It is pouring down rain and my house is a mess, and we have to go in the hospital 2 days earlier than planned, but I am FEELING GOOD!
-- We go in the hospital Tuesday, rather than Thursday ... which means we should be back home Sunday evening, which means I will be here Monday, the First Day of School for the elder 3. I can fill their bentos and lay out their clothes and meet their teachers. And be home when they return to tell me all about their new teachers and who's in their classes and all that good stuff.
-- Dr. Karen posted an ABBA video that put a goofy smile on my face. Last weekend, my sister drove down and she, my mom, and I went to see Mamma Mia. Yes, this was my second time to see it. My name is Lizard Eater and I am a Silly Fun Addict. Even more fun than the movie: my 77 year old mother had so much fun; I burned her a copy of the soundtrack which she has apparently been playing every morning as she fixes her coffee.* Then I made her a copy of ABBA greatest hits, which she is also playing obsessively. My mother is Very Dignified, so to see her letting her hair down is quite enjoyable.
* "What is ABBA?" asked my father, very earnestly. I explained and he asked, confused, "Well, how did we miss it?"
-- Last night, my best girlfriends came over for the singalong that was for the purpose of breaking in my guitar and back deck. Cue "pouring rain." Well, LW's counts are up, so I banished the family upstairs (no punishment, they had a giant gameroom and delivery pizza) and we took over the living room. Much singing, much eating, much drinking, much gabbing. They even tolerated me playing a few originals and even sang along on the chorus of one. Hearing other people sing something you wrote is so cool.
-- School starts a week from Monday. And we go in the hospital Tuesday. And it's pouring rain. Am I running around like crazy, doing back to school shopping? NO! And not because I'm a total slacker mom (though I am). Last weekend, Aunt GlamourGirl flew down here and took each kid, one at a time, back to school shopping. Even Little Warrior. As befitting her name, Aunt GlamourGirl made sure that each child has a wardrobe better than any I've ever had in my entire life. I didn't have to do one bit of back to school shopping!
-- My dad told me he's proud of me. I'm 39. It shouldn't matter. But it does, and it touched me.
If you have someone whom you're particularly proud of ... tell them.
-- We go in the hospital Tuesday, rather than Thursday ... which means we should be back home Sunday evening, which means I will be here Monday, the First Day of School for the elder 3. I can fill their bentos and lay out their clothes and meet their teachers. And be home when they return to tell me all about their new teachers and who's in their classes and all that good stuff.
-- Dr. Karen posted an ABBA video that put a goofy smile on my face. Last weekend, my sister drove down and she, my mom, and I went to see Mamma Mia. Yes, this was my second time to see it. My name is Lizard Eater and I am a Silly Fun Addict. Even more fun than the movie: my 77 year old mother had so much fun; I burned her a copy of the soundtrack which she has apparently been playing every morning as she fixes her coffee.* Then I made her a copy of ABBA greatest hits, which she is also playing obsessively. My mother is Very Dignified, so to see her letting her hair down is quite enjoyable.
* "What is ABBA?" asked my father, very earnestly. I explained and he asked, confused, "Well, how did we miss it?"
-- Last night, my best girlfriends came over for the singalong that was for the purpose of breaking in my guitar and back deck. Cue "pouring rain." Well, LW's counts are up, so I banished the family upstairs (no punishment, they had a giant gameroom and delivery pizza) and we took over the living room. Much singing, much eating, much drinking, much gabbing. They even tolerated me playing a few originals and even sang along on the chorus of one. Hearing other people sing something you wrote is so cool.
-- School starts a week from Monday. And we go in the hospital Tuesday. And it's pouring rain. Am I running around like crazy, doing back to school shopping? NO! And not because I'm a total slacker mom (though I am). Last weekend, Aunt GlamourGirl flew down here and took each kid, one at a time, back to school shopping. Even Little Warrior. As befitting her name, Aunt GlamourGirl made sure that each child has a wardrobe better than any I've ever had in my entire life. I didn't have to do one bit of back to school shopping!
-- My dad told me he's proud of me. I'm 39. It shouldn't matter. But it does, and it touched me.
If you have someone whom you're particularly proud of ... tell them.
Wednesday, August 13, 2008
Another liberal shot
No real details yet, but it sounds like the gunman was upset over a job loss. He went into party headquarters and shot Arkansas Democratic Party chairman, Bill Gwatney.
Too hazy right now -- might also have waved a gun in Arkansas State Baptist Convention headquarters.
Too many thoughts rushing through my head. Will stop now and wait til they find out more.
Too hazy right now -- might also have waved a gun in Arkansas State Baptist Convention headquarters.
Too many thoughts rushing through my head. Will stop now and wait til they find out more.
Tuesday, August 12, 2008
Sunday, August 10, 2008
Friday, August 08, 2008
Folkie Friday!
I've been methodically going through Rise Up Singing, building up my calluses and preparing for my Girls Night Out Singalong next Friday. I've seen the words for Waltzing with Bears but never heard it. Rustled up a version on YouTube and now Little Warrior and I are completely hooked.
Speaking of kids' songs ... I remember seeing Pete Seeger do "Garbage" on Sesame Street when I was a kid. As relevant now as then ... nay, more so.
Now go listen to Bryan Bowers' Aura. Guaranteed to put a smile on your face. Unless you are a humorless New-Ager. (Are there any? I hope not.)
written by Mark Graham
And when you can take an honest, devastating song, go to Bowers' Prison Song.
Speaking of kids' songs ... I remember seeing Pete Seeger do "Garbage" on Sesame Street when I was a kid. As relevant now as then ... nay, more so.
Now go listen to Bryan Bowers' Aura. Guaranteed to put a smile on your face. Unless you are a humorless New-Ager. (Are there any? I hope not.)
written by Mark Graham
I've done lots of spiritual healing
I'm in touch with all my feelings
I've read palms and read the stars for kings and queens,
And I hate to bum you out, but you have without a doubt
The ugliest aura that this poor boy's ever seen
cho: 'Cause I can see your aura and it's ugly.
Your Spirit must be rotten to the core,
And to a new age guy like me
You'll just bring pain and misery,
So dear, I cannot love you anymore.
In some life you lived before
You murdered people by the score.
Your evil is so totally complete.
All good in you is gone, you are darkness with no dawn,
Either that or you are eating too much meat.
And when you can take an honest, devastating song, go to Bowers' Prison Song.
Wednesday, August 06, 2008
Nighttime
I do just fine during the day. There's always something to fill my mind -- things to do, things to make, play with the kids, fuss at the kids, bills to pay, internet to read.
Nighttime ... at some point, I have to leave an empty space for my thoughts. At some point I have to turn off the tv, switch off the computer, put down the book. And in that space between book and sleep, my thoughts go wild. And the space grows, and I can't sleep.
Cancer is a mind-fuck. I'm sorry, there's just no other word or phrase that means the same thing. "Messes with your mind," is too gentle for the reality.
Right now, as far as we know, Little Warrior is completely healthy. All cancer-free.
But she looks completely awful. Oh, her spirit is strong and that is beautiful, but her eyelashes are falling out, as are her eyebrows. Her head isn't bald, though. As stubborn as she is, her hair is a fine thin layer that holds fast. Tug it and she says "ouch." It's not budging. "Should we shave it?" I ask The Husband. We agree that it's not spotty, it's all over. We leave it, which is good. As long as she has something, in her mind, she has hair. Heck, she rarely looks in the mirror. I put Bo Peep's hair in a ponytail and LW asks for her hair to be put in a ponytail, too. I find a bitty-bitty barrette.
This isn't the cancer, I remind myself, as I look at her, sleeping. The shadows under her eyes are deep. She looks ... well, I'll just say it ... she looks like she's ... no. I can't say it.
She's not, I remind myself. This isn't the cancer. It's the cure. It's the chemotherapy.
When she's awake, it's harder to worry. She's full of piss and vinegar. "Meanie, meanie!" she shouts at her brother for some infraction. She runs. She plays. Her eyes are bright.
You ever wake up, suddenly, in the middle of the night? And then you think, "what woke me up?" And you worry that while you were asleep, there was a loud noise that woke you up -- a window being broken, someone breaking into the front door. So you lie very, very still, your eyes tightly closed, stretching your ears to their fullest, listening for ... something.
Little Warrior rolls over in her little inflatable bed by ours and sighs. And my worries about a strange faceless person in the house are replaced with the reality of what is in the house with us.
And I can't fall back asleep.
Nighttime ... at some point, I have to leave an empty space for my thoughts. At some point I have to turn off the tv, switch off the computer, put down the book. And in that space between book and sleep, my thoughts go wild. And the space grows, and I can't sleep.
Cancer is a mind-fuck. I'm sorry, there's just no other word or phrase that means the same thing. "Messes with your mind," is too gentle for the reality.
Right now, as far as we know, Little Warrior is completely healthy. All cancer-free.
But she looks completely awful. Oh, her spirit is strong and that is beautiful, but her eyelashes are falling out, as are her eyebrows. Her head isn't bald, though. As stubborn as she is, her hair is a fine thin layer that holds fast. Tug it and she says "ouch." It's not budging. "Should we shave it?" I ask The Husband. We agree that it's not spotty, it's all over. We leave it, which is good. As long as she has something, in her mind, she has hair. Heck, she rarely looks in the mirror. I put Bo Peep's hair in a ponytail and LW asks for her hair to be put in a ponytail, too. I find a bitty-bitty barrette.
This isn't the cancer, I remind myself, as I look at her, sleeping. The shadows under her eyes are deep. She looks ... well, I'll just say it ... she looks like she's ... no. I can't say it.
She's not, I remind myself. This isn't the cancer. It's the cure. It's the chemotherapy.
When she's awake, it's harder to worry. She's full of piss and vinegar. "Meanie, meanie!" she shouts at her brother for some infraction. She runs. She plays. Her eyes are bright.
You ever wake up, suddenly, in the middle of the night? And then you think, "what woke me up?" And you worry that while you were asleep, there was a loud noise that woke you up -- a window being broken, someone breaking into the front door. So you lie very, very still, your eyes tightly closed, stretching your ears to their fullest, listening for ... something.
Little Warrior rolls over in her little inflatable bed by ours and sighs. And my worries about a strange faceless person in the house are replaced with the reality of what is in the house with us.
And I can't fall back asleep.
Tuesday, August 05, 2008
Chemo Eyes
"Chemo eyes," I say to The Husband.
He nods. He knows exactly what I mean.
It hits after one of the "biggie" chemos, the chemos that are so big and so potentially dangerous that we have to go spend time in the hospital. It's not just dark circles under her eyes. And it's not just that the baldness makes her peepers more prominent. Her eyes themselves get bigger and darker. She looks like one of those old cartoons of the war orphans with humongous eyes. Other cancer-parents corroborated this. It happens to their CKs (Cancer Kid), too.
In a few days, they'll begin to look more normal, won't be quite so heartbreaking.
Til the next round.
Saturday, August 02, 2008
YouTube videos for and about TVUUC
Just bumped into this. Bloggers were not the only ones this week offering up their thoughts, prayers and remembrances to the members of Tennessee Valley UU and Westside UU:
Interrupted Prayer - for TVUUC with love
How Can I Keep from Singing by a TVUUC young adult
Deepest Sympathy to the Congregation of the TVUUC
Interrupted Prayer - for TVUUC with love
How Can I Keep from Singing by a TVUUC young adult
Deepest Sympathy to the Congregation of the TVUUC